Category Archives: Creative Approaches/Clinical Trial Information

Info about the UPenn Immunology trials I am undergoing and other creative approaches such as Bruckner’s Oncology

Brava!

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She may make everything look easy and glamorous but she is doing it publicly, with intention and saving far more lives than we will ever be able to count. Brava!  xo marcy

This was originally posted March 24, 2015 in the New York Times:http://www.nytimes.com/2015/03/24/opinion/angelina-jolie-pitt-diary-of-a-surgery.html

Diary of a Surgery by Angelina Jolie Pitt

LOS ANGELES — TWO years ago I wrote about my choice to have a preventive double mastectomy. A simple blood test had revealed that I carried a mutation in the BRCA1 gene. It gave me an estimated 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer. I lost my mother, grandmother and aunt to cancer.

I wanted other women at risk to know about the options. I promised to follow up with any information that could be useful, including about my next preventive surgery, the removal of my ovaries and fallopian tubes.

I had been planning this for some time. It is a less complex surgery than the mastectomy, but its effects are more severe. It puts a woman into forced menopause. So I was readying myself physically and emotionally, discussing options with doctors, researching alternative medicine, and mapping my hormones for estrogen or progesterone replacement. But I felt I still had months to make the date.

Then two weeks ago I got a call from my doctor with blood-test results. “Your CA-125 is normal,” he said. I breathed a sigh of relief. That test measures the amount of the protein CA-125 in the blood, and is used to monitor ovarian cancer. I have it every year because of my family history.

But that wasn’t all. He went on. “There are a number of inflammatory markers that are elevated, and taken together they could be a sign of early cancer.” I took a pause. “CA-125 has a 50 to 75 percent chance of missing ovarian cancer at early stages,” he said. He wanted me to see the surgeon immediately to check my ovaries.

I went through what I imagine thousands of other women have felt. I told myself to stay calm, to be strong, and that I had no reason to think I wouldn’t live to see my children grow up and to meet my grandchildren.

I called my husband in France, who was on a plane within hours. The beautiful thing about such moments in life is that there is so much clarity. You know what you live for and what matters. It is polarizing, and it is peaceful.

That same day I went to see the surgeon, who had treated my mother. I last saw her the day my mother passed away, and she teared up when she saw me: “You look just like her.” I broke down. But we smiled at each other and agreed we were there to deal with any problem, so “let’s get on with it.”

Nothing in the examination or ultrasound was concerning. I was relieved that if it was cancer, it was most likely in the early stages. If it was somewhere else in my body, I would know in five days. I passed those five days in a haze, attending my children’s soccer game, and working to stay calm and focused.

The day of the results came. The PET/CT scan looked clear, and the tumor test was negative. I was full of happiness, although the radioactive tracer meant I couldn’t hug my children. There was still a chance of early stage cancer, but that was minor compared with a full-blown tumor. To my relief, I still had the option of removing my ovaries and fallopian tubes and I chose to do it.

I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this. A positive BRCA test does not mean a leap to surgery. I have spoken to many doctors, surgeons and naturopaths. There are other options. Some women take birth control pills or rely on alternative medicines combined with frequent checks. There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally.

In my case, the Eastern and Western doctors I met agreed that surgery to remove my tubes and ovaries was the best option, because on top of the BRCA gene, three women in my family have died from cancer. My doctors indicated I should have preventive surgery about a decade before the earliest onset of cancer in my female relatives. My mother’s ovarian cancer was diagnosed when she was 49. I’m 39.

Last week, I had the procedure: a laparoscopic bilateral salpingo-oophorectomy. There was a small benign tumor on one ovary, but no signs of cancer in any of the tissues.

I have a little clear patch that contains bio-identical estrogen. A progesterone IUD was inserted in my uterus. It will help me maintain a hormonal balance, but more important it will help prevent uterine cancer. I chose to keep my uterus because cancer in that location is not part of my family history.

It is not possible to remove all risk, and the fact is I remain prone to cancer. I will look for natural ways to strengthen my immune system. I feel feminine, and grounded in the choices I am making for myself and my family. I know my children will never have to say, “Mom died of ovarian cancer.”

Regardless of the hormone replacements I’m taking, I am now in menopause. I will not be able to have any more children, and I expect some physical changes. But I feel at ease with whatever will come, not because I am strong but because this is a part of life. It is nothing to be feared.

I feel deeply for women for whom this moment comes very early in life, before they have had their children. Their situation is far harder than mine. I inquired and found out that there are options for women to remove their fallopian tubes but keep their ovaries, and so retain the ability to bear children and not go into menopause. I hope they can be aware of that.

It is not easy to make these decisions. But it is possible to take control and tackle head-on any health issue. You can seek advice, learn about the options and make choices that are right for you. Knowledge is power.

This was originally posted March 24, 2015 in the New York Times:http://www.nytimes.com/2015/03/24/opinion/angelina-jolie-pitt-diary-of-a-surgery.html

And Then a Texan Called

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I haven’t spoken much about my HEATT team except to say they are fantastic. They are varied individuals, compatible and unified in their avid curiosity and commitment to how heat treatments can stall disease. The “father” of the trajectory I am on, HEATT, is Roger, a Texan complete with cowboy hat, home on a ranch, and Marlboro man face. He has been working on heat therapies for decades and flies into San Jose for every surgery and, like all the team members, is very available. (They give out their personal cell numbers, answer the phone and seem happy you called!)

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Roger checks in on me regularly. When he read my latest blog post he called from the airport to say, “Whoa, your situation is not that dire from our perspective.” He went on to explain stuff that I cannot easily re-explain but the swelling of my cancer may be its response as it prepares to die. HEATT is working to make changes at the molecular level and that takes time.

I feel a glimmer of hope

I start chemotherapy next Wednesday and I am quite ready – gemzar and avistan, both drugs I have had before. I wish I could start today and have some immediate pain reduction. My kick off palliative care appointment isn’t until the end of the month. But I cherish a small permission to wonder if maybe my toes will step into 2017 and beyond.

If nothing else, I do provide a good story of suspense.

Love, Marcy

P.S. Keep those helpful ideas coming!

 

Getting Cooked in 2015

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Medical plans for 2015 are in place.

The last week of January I will become the only person you know (admit it) that is getting cooked in an effort to stunt her disease. I will get cooked six times as part of this Phase One clinical trial – every 28 days. The cooking, technically known as heating, happens in an operating room with me under general anesthesia for the four plus hours. During the procedure my blood is continuously removed and returned (much like dialysis) as it is heated to the magical 107.6 degrees Fahrenheit temperature. The first hour gets the blood to the required temperature, the last hour cools the blood back down to normal. In the main part of the procedure the blood functions like a radiator to heat my entire body to the 107.6.

107.6 F

107.6 F

There is nothing very new about the idea of heating the cancer to kill it off. It’s been an international effort with Germany and Japan also spending significant time on the concept. The challenge has stayed getting the body hot enough to destroy cancer with out destroying major organs – a tough balance. Clearly, a human cannot survive a two-four hour fever of 107.6.

So how do I intend to survive? Well, my team of doctors believes, and has convinced the FDA, that they have evolved the equipment needed to protect my organs while heating me up. While I will be within the first handful of patients using this equipment, there is a longer history to calm me.

A doctor in Galveston, Texas, Dr Roger Vertrees, designed the initial two generations of  equipment first using it on 40 AIDS patients in the nineties and then 10 very advanced lung cancer patients in 2004. Both were well-documented, credible trials. Dr Lilja, my new doctor in San Jose tracked this work, travelled down to watch and when the Galveston Hurricane images

wiped out their lab suggested they relocate to San Jose where the third and current generation of the equipment is setting sail. Now Dr. Vertrees travels to San Jose for every surgery and is the “founding father” of the working team in 2015.

I enjoyed meeting the San Jose HEATT team. They are run out of a small, no frills private practice under the lead of Dr Lilja, a long time (but still quite young) gyn/oncologist. The hospital they work with, Good Sam, is nearby and also pretty plain and well regarded. Dr Lilja seems to be a bit of a visionary much like Drs Bruckner and Hirshfeld – willing to live a more simple life in the pursuit of cancer breakthroughs.

Dr. Lilja has long explored heated chemo (known as HIPEC) for his patients. HIPEC is hard to tolerate, not relevant for heavily metastatic people like me and serves as no magic wand motivating his look beyond towards HEATT.

I like the dedication, teamwork and vision, which is good because I am putting my life and hopes for a future in their hands.

Expect updates from Marcy the lab rat.images-4

A Summary Shout Out to Bruckner Oncology

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Please Note: I still owe you an update of my next medical steps – coming soon! Until then let me close out this phase with the great Team Bruckner.

Back in June 2014 I posted about Joining Team Bruckner. I have made subsequent posts about the experience on the Livingly Dying blog. I completed a total of 13 treatments, each two weeks apart and all requiring out of state travel because I could not find an Oregon oncologist to provide the treatment.

I traveled to the Bruckner Oncology clinic in NYC four times and completed an additional 9 treatments in California under their guidance. As I take a break from the protocol it seems a good time for a summary update.

Bruckner Oncology is where many patients go when their oncologists say, “There is nothing more we can offer you.” Some patients, like me, start earlier in the process usually motivated by a cancer crisis. Over the last three years the docs at Bruckner Oncology have increasingly wrapped their big brains and huge hearts around recurrent ovca (ovarian cancer) because they like to focus on the cancers that stay especially deadly.

The partnership between the elder Dr. Bruckner and the younger Dr. Hirschfeld is a thing of beauty allowing every patient access to their best collegial thinking. I have worked with oncological teams in four different settings beyond Bruckner Oncology. I have had few complaints. My teams were caring and solid. I accepted the extremely limited contact with my actual doc. Nurse intermediaries represented me between the 15-minute visits with my oncologist. It worked but rarely felt like it encouraged dynamic problem solving.

To arrive at Bruckner Oncology is to leave that tiered system behind. Yes, there are PA (physicians assistants) and receptionists but they are a bridge not a barrier to your bountiful time with the doctors themselves. I can email or call my doctors directly at any point and expect a sprightly response – even when one is in Europe and the other had a baby late the night prior.

It’s a people’s clinic. No one is turned away. Every problem has an answer and they just don’t stop trying creative possibilities. Saying that, patients still die there. Recurrent, late stage cancer is not an easy to tame dilemma. They keep people alive for longer and have bragging rights on some amazing cases headed for hospice and now in their third year of remission with pancreatic cancer and more.

Their starting cocktail, adapted as needed, is built on the idea that lower doses of compatible chemos allow more impact with less damage and less development of resistance. But like any toxic cocktail it can’t be used forever. They start with that cocktail, continue through a post remission period and then tinker from there. Actually, they tinker throughout. That is why the level of contact between the doctor and patient is so high; they really need to KNOW how we are doing. They order a more comprehensive set of labs than most of us are used to. They listen, they look, they wonder. Throughout the infusion, they roam the room on a regular basis. And their interaction with the PAs and nurses is collegial and constant. There is a lot of respect being shared. (It also seems like staff love their jobs.)

What you don’t find there is a moneyed spa. The people’s clinic is crammed elbow to elbow. The nurses had better be damn good because a lot of the triple checks of other places are replaced with high competency expected of the primary nurses. They deliver. Visitors are often made to wait elsewhere or left standing for hours on end. It is crowded when your policy is to accept everyone. My husband noted, “It’s a bit like getting your chemo in a bus station.”

The front desk is understaffed. They can require multiple checks on every request but you see how much they are handling and so you partner with greater grace than you might at an overstaffed office, where systems are ironically often too staffed to work well. Here the problem is the opposite.

The treatment is Medicare covered. They do use creative, proven approaches like iv vitamin c that is yet to be paid for by any standard insurer but they are quick to advise you of out of pocket costs before you incur them.

The location of the clinic is in the Bronx, which is easy to get to if you are comfortable with public transportation. NYC is a Mecca for being able to get everywhere on little money. The American Cancer Society offers free lodging at Hope Lodge in midtown Manhattan – and an express bus available 5 blocks away goes to two blocks from the clinic.

There is no question that travelling to treatment is a challenge. I traveled cross-country and hated it. And it is expensive! I transitioned to a clinic in N California for treatments – still a slog but staying in the same time zone helps. I continue to seek a local provider but as I document on my blog that is not easy to do in our current medical industrial climate.

If you want more options I recommend that you flag this clinic for a time in your treatment when you don’t like what your local team is offering up. I started at Bruckner Oncology when my cancer surged from no evidence of disease (NED) status to being measured 45 days later in inoperable inches. Now I transition to a Phase One clinical trial knowing that in my six months of care with Bruckner Oncology, they disappeared my high volume of cancer. I transition because my cancer is starting to break through the cocktail and my body seeks a chemo break. I have no doubt that I will return to Bruckner Oncology again in this cancer journey.

Adopt Me, Please? Chemo Fanny-pack Included.

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This week I used social media to spread the word that I needed a household with a spare room close to my new chemo clinic in Marin County, California to adopt me. I am not familiar with California, have few contacts there and knew no one living in Marin County.

Adopt Me!

Adopt Me!

As a community organizer, I frequently ask people to donate for a cause. I prefer not being the cause but life dealt me a needy hand in 2010. I pursue cutting edge treatments to extend my life, and thus I need to travel. I haven’t yet figured out a way to get donated flights but I can make flying my primary cost. I bring my own food, find free housing and use public transportation.

I transferred my treatment to California last round (and yes I owe you a story on that). Friends living a county away in Sebastopol offered to house, shuttle and feed me, which they did with zest. I even got a great dog companion and to review a brand new film (My Straight Son from Venezuela) as part of the deal. The commute, though, was wrong in every way. So sadly I sought out a new host family closer to the clinic.

A Great Place!

A Great Place!

How to get adopted (again) in a community I didn’t know? I started by asking patients being infused at the same time. They referred me to the oncology social worker. She was very nice but listed out only former programs, all cancelled, which would have helped me in years past with no replacement options. I was slightly aghast at the model. Actualizing a current safety net for patients was clearly not going to happen.

So I drafted a little note and started sending it out to whoever had California connections. I posted it on facebook. I sat back and waited. In the interim a stranger sent me an email. He had just read my article in the Fall Quarterly edition of YES! Magazine

Find My Article Inside on Livingly Dying!

Find My Article Inside on Livingly Dying!

on Livingly Dying and was writing to thank me. He closed his note with a Marin County address. I wrote him back and said, “Hey, thanks for your note and guess what, I am getting treated in your county and need housing.” He quickly offered support and soon his friends were spreading the word. Long story short, a community of helpers in the nearby community of Mill Valley has sprung up.

Local Host Sought in Greenbrae/Larkspur (Marin County) Community

Do you have a guest room and a big heart? Oregon cancer patient travels to Marin Specialty Care Clinic for cutting edge cancer treatment. Current travels bring me here every other week for two nights. During the day I am being infused at the clinic. I am a fit, vibrant woman. I need little support outside of a place to sleep. Questions/Ideas – marcy@rop.org

Some friends and family wonder why I don’t get a motel room. I even kind of like motel rooms – free ice and cable!

Lonely...

Lonely…

My rejection goes beyond pure budget woes although the truth is the travel of the last two months has run more then my travel for an entire year of flying to U Penn for treatment. Containing costs is the boring reason. Continuing to thrive is a bigger reason. I value community, I value barter, and I value direct contact with new people going beyond their comfort level. Finding community hosts keeps me feeling that I am living a life beyond medical care.

I fly out Tuesday for my next treatment cycle. It will make me sick for a full week — I dread the infusion. But these past few days I have focused on feeling good right now, finding new community and meeting them via the internet as I count down (not to being sick) but to a new adventure. My new host tells me, “Dinner is at six.” as she inquires on best foods. Two women have volunteered to drive me between the clinic and Mill Valley – one has a textile studio in her back yard that I hope to tour as a fellow textile artist. Perhaps I can borrow a bicycle from some one else? Keeping my true identity as I also accept my reality as a terminally ill cancer patient is not a bad balance to negotiate.

This summer I have vacationed ; ) in the Bronx Riviera, Harlem east and west, midtown Manhattan, Sebastopol and now I am off to discover more attractions of Northern California. Yes, I fit in 31 hours of chemo as well that brings me to my knees but until I am down I will enjoy the distractions. Thank you to the dozens and dozens who have spread the word and considered or signed on for a more active role in making my Marin County excursions the vacation I never dreamed of.images-2More soon on how I went from the Bronx clinic (the people’s clinic aka Bruckner Oncology) to a Marin Clinic with organic snacks and bountiful views – quite a change in zip codes!

Off to the Bronx Riviera

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Not every infusion center lends itself to the vacation metaphor. The Bruckner Clinic is a little on the gritty end. And life-saving experimental chemotherapy cocktails have their own emotional and physical challenges rarely woven into the vacation experience but, hey, they are just barriers. In hours I fly off with my beloved for 29-hour infusion number two at (ok, near) the Bronx Riviera. Not bad, eh?

We are, actually, excited. We may not get a chance to frolic on a beach but we will get an adventure, time in the big city and time together. IMG_8714For those of you who do get to vacation in the Bronx, send us a postcard from Orchard Beach; we are curious.

I have felt strong for almost a week, my belly feels significantly less full of surging cancer and I am ready for round two.

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My Own Steamroller

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I never hoped to own heavy equipment that would be my big brother’s dream. But here I am with my own steamroller. imgresIt has just spent four days rolling over me but last night it headed for the garage. Or somewhere. I didn’t look. I snuck out of bed and practiced being alive.

I have joined Team Bruckner and I am not sure it is the easiest team to play on. I trust they will adjust my dosing to accommodate the depth of my four days of post-first-infusion misery. But 29 hours of infusion will probably never be easy. I add in cross-country travels.

My husband just bought a ticket to accompany me when I fly back out next Monday. I don’t envy him the job of chaperoning – it’s half clean up crew and half security. My dose of steroids must be HIGH as the mere folding of a tee shirt can leave me howling in a rage. The dog and husband look fearful when I leave bed. This is not what I want for them or me, a puking madwoman.

Am I extending my life or insuring that all will be able to bear what comes next? This seeking out of the good death at the right time may be for wiser folk than I.

My infusion cocktail is made up of six therapeutic drugs and endless anti-nausea and steroidal perks. I start with the standard cocktail, as (such confidence!) my cancer gets tamed the dose will be tailored and lightened. At the close of day one infusions, a shoulder bag arrives filled with my to-go dose; it’s my overnight pal pumping away. It gives a new angle to purse snatching in the big city. This connects right to a needle in my chest. The cocktail is not specific to my brand of cancer but rather the drugs are selected for how they play off each other, minimizing the cancer’s ability to adapt and maximizing the impact of each drug.

Since I am coming off a year of immunotherapy (which they are a fan of), they hope that they can take the cancer-eating sharks imagesdelivered to my body this last year and wake them up by putting blood in the water aka decaying cancer.

Time to DEVOUR cancer.

Time to DEVOUR cancer.

Hmmm…. sounds good but it always sounds good and reasonable. Too bad I have learned that cancer is entirely unreasonable.

Team Bruckner is a place of hope, a last stop for most. I think it is my only chance of getting past my cancer’s outburst but I recognize it as a big gamble and the verdict will stay out for quite a bit longer. But hey, I have a steamroller I’d love to loan out.images

Summer 2014 Vacation Plans Take Shape

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I am off for a new vacation adventure — destination New York City. Most of the summer tourists might be checking out Broadway or the beach but not me, I am heading to Bruckner Oncology.

Bruckner Oncology

Bruckner Oncology

My volunteer travel agent, Carole Zoom, interrupted her final wedding details to find last minute tickets. She even threw in some of her own frequent flyer miles. How to say, “Thank you.” I hope to meet her for the first time later this summer.

Another friend in NYC, Jenny Levison, has map quested my every move upon arrival, is seeing if she can help with rides and made her home available. Despite her husband’s sons wedding being this Friday. She just kind of dropped everything and made this sound like her plan for the week. My mom and sister are now vying to see who wins the chaperone ticket for this trip. I am feeling wildly popular and loving it.

The ever intrepid Holly Pruett, quarter backed without question getting my massive files to NYC, and the doctor to review, comment and schedule me for this next week. The staff seem great, the doctor incisive in how he has already parsed four years of treatment history into a winning plan for circumventing my aggressive cancer despite my high failure rate with chemo.

He is known for treating us chemo failures, a large group of cancer patients that usually just die. He admires my existing treatment team and will work with them and even feels he can compliment the immunotherapy trial start up effort while he stabilizes me until my turn comes up for the T Cell Depletion Part Two, presumably this winter.

Other friends have brought in cheer, food and flowers to keep the modestly catatonic Mike and I of good spirits.

I have cried for a total of 60 seconds. I know this news is dire. I also heard my body SCREAMING, got tested and have felt my body settle down since the results came in.

I had a back up plan researched and it played out perfectly. Dr. Bruckner was where I wanted to go if things went bad. Everything has only confirmed that plan.

I value my local doctor a lot but knew as soon as she shared her treatment proposal that it was a path towards death – it wouldn’t work for me. Some day I might select those drugs but not now. She accepted that. I have had two surgical consults and they both said the exact same things about the amount of cancer I currently have leaving me inoperable. I don’t agree with that but I accept that – they were quite certain.

I feel hopeful. Not for a cure, ha!, but for continuing on the path assigned me. My body feels strong. My naturopath is working to address my blood sugar issues that probably caused my loss of consciousness earlier this week. And two days that total sixteen hours of infusion, well, that’s gotta do something. Right?

Stay tuned.

warmly, marcy

Cone of Happiness

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It is with great relief and gratitude that I close out a year of arduous and, possibly, effective treatment treks from Oregon to Philadelphia for my recurrent stage iv ovarian cancer.

Cone of Happiness

Cone of Happiness

I first arrived at UPenn’s Perelman Center for Advanced Medicine on April 4th, 2013. It had taken me twenty months to qualify for this tentative visit. Paperwork was signed on May 8th, Aphereisis #1 completed on May 22nd with my starting round of treatment June 5th and 6th of 2013. On March 12th and 13th 2014 I completed my 15th trek to Philly and my 11th round of treatment not knowing it would be my last. But it looks like that was my closing treatments for the part one of this clinical trial! Wow!

It’s been a complicated month since I lowered the Cone of Silence. It is never easy to interpret test results without the hands-on experts leading you and my great UPenn doc was gone until April 10th. The Internet told me a pericardial effusion was a bad sign. On April 17th, my doc could finally advise me from looking at the actual scans that the size of my effusion, a mere 1-2 cm of fluid around the heart, was not a concern. (Another probable side effect of Avistan.)

While waiting to understand my March test results, my body was increasingly crashing from the burdens of Avistan, a drug I knew I was set to go off, which tempered my complaints. What I did not expect was on April 10th UPenn offered that in lieu of dropping Avistan, they would give me a month off of treatment and add a day to my next proposed treatment cycle to determine if they could administer the Avistan. My heart dropped a little. I wasn’t sure I was up for more travel and more Avistan but I did not want to be cavalier about stopping participation in this trial given all that it has meant for extending my life.

Luckily, I had an appointment with my Oregon oncologist scheduled for the next day – my first visit to OHSU (Oregon Health Sciences University) in a year! As I biked to OHSU the next morning I found tears of joy on my face – it was wonderful to be enjoying a commute to my medical world. Entering OHSU-land (the largest employer in the city of Portland) I was awed by how affirming I find this community. I park my bike with hundreds of others. I get my free ticket for a jolly tram that arrives like a descending sculpture over my head and takes me to the top of the hill as if on an adventure versus a medical treadmill. It’s Tulip Sales Day so bright colored blooms are being sold for five dollars to support some good cause. My appointment is in the women’s center, which offers huge windows, a play area for children and adults on a wrap around balcony outside, all taking in the awesome view of mountains. Every moment at OSHU gentles the medical woes with positive possibilities. It is not so bad being sick amid a culture dedicated to hope and zest. Oh, I wanted to come home for treatment.

My appointment started early and my lovely, calm Doctor arrived with all my recent test results and said, “Wow, aren’t you doing great!” I explain that I have four vaccines left and she asserted before I have even biased her answer, “No, I think you are done. I think you have chosen a resolute and courageous path. You have gotten a lot of benefit and you will probably get no more.” I could have jumped in her lap and wept. Instead I listed my medical woes and she decisively attributed them all to Avistan, a drug she also believes in and dispenses often. But my body needs a break.

I await my two great docs deciding what is the proposed treatment plan for me here in Oregon. It is now my body’s turn to prove what it has learned from the Part One Autologous OC-DC Vaccines. I intend to cheer on my rebooted immune system in tracking down and eliminating new ovarian cancer cells. Or I may recur and get in line for a return to UPenn for the Part Two T Cell Infusion. I am fortunate to count down to either option.

May we build a world where all diseased people find they have positive options for getting diagnosed, finding treatment options and not being burdened with a payment plan. Thanks to this clinical trial, I might have a bit more time to contribute to that effort! Let’s add that to my to do list. much love, marcy

New To Do List

New To Do List

Goodbye Avistan and Final Scan Results

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The final results of my March ct scan are in, the RECIST read. The radiologist contracted for the deeper read for this trial signed off on my scan as “no disease progression.” In fact, there was some reduction of disease in the abdomen. I am still trying to get answers about the pericardial effusion but the doctor is out until April 10th so I will content myself with everyone else’s lack of concern! Actually, they see the enlarged lymph nodes as a possible indicator of my immune system fighting per vaccine intent.

Why does my marker steadily rise? How to understand the aggravated lymph nodes and fluid around my heart? For now they are simple reminders that I am in a Phase One Clinical Trial trying to teach my body to fight back my aggressive ovarian cancer. There are many mysteries in this process.

I sometimes feel like the boy in the hills crying, “Wolf.” But the purpose of this blog is to make real life with terminal disease – constant testing, relentless waiting and then unclear results are a significant, routine burden.

The roller coaster of disease ups and downs, engulfed in bigger woes.

The roller coaster of disease ups and downs, engulfed in bigger woes.

For most of 2013 testing was relatively easy because my marker was so stable but as the marker rises, my friends and I with terminal disease find we wait for the other shoe to drop. Stable pronouncements don’t calm as much as they should. But I am determined to accept this news as is – good!

Other news was unexpected. I need to stop taking Avistan, a core drug in the trial, because I have moved into an unsafe range. UPenn is rewriting the maintenance protocol in the hopes that the external review bodies will approve my staying in the trial. I don’t have anxiety about what happens. (My lack of anxiety is also because I am assuming that I will be able to go back on Avistan eventually or still opt in to the Part Two T-Cell Phase when relevant if I take a break from the drug now.)

Avistan is the drug I dragged my heels on starting for 8 months. I was supposed to start with my first recurrence in Autumn 2011. For months I stalled, often calling off the start in the final week even while knowing how lucky I was to have access to this incredibly expensive new drug that many countries and insurance companies refuse to pay for.

I distrusted Avistan for my own hard to justify reasons. It is actually not a chemotherapy agent but rather a “biologic” that works to cut off the blood supply to existing tumors, killing them. When I first started treatment back in spring 2010, I started in a Phase Three Clinical Trial where 2 out of 3 patients were given a trial biologic anti-angiogenic – I still don’t know if I was in the placebo arm or not. It was the marketing overkill, price tag and current reality of what it takes to bring a drug to market that fueled my distrust as well as the rumors that those of us who took the miracle drug got short term payoffs but when the cancer learned to go round it, the result was relentless. I took those rumors to heart. And it is a drug too new to even be approved for ovarian cancer or for anyone to know that proper dosing or use of.

The UPenn team really believes in Avistan and that has lessened my fears. I have now been on Avistan for over two years and my body has gradually been starved by protein being spilled into the urine. Now, I am at grade three status and the risks are too dire for my kidneys. Avistan’s side effects always kicked my butt. Maybe it was payback for my reluctance. Unrelenting nose pain and ever increasing headaches lowered my daily quality of life. I feel joy as I imagine approaching relief of these big discomferts. Ahhhh…..goodbye Avistan for now.

Thank you, dear readers, for staying with me on this roller coaster of disease. I enter a new year ever hopeful! Happy birthday to me.IMG_4850_3

Cone of Silence

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The Cone of Silence is a repeated spoof from Get Smart. It means little. I am lowering my own Cone of Silence as I await a more detailed read of my test results from last week.images

The preliminary intimations show cancer on the move in the chest including a pericardial effusion around the heart. Not good. I will update everyone when I take off my Cone of Silence, most likely when there is a plan of action.

I distract myself with Spring busting out all over – I saw my first trillium blooms this morning. Ahhh….. enjoy, marcy

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Philly Trek #14, Treatment #10 – Performance Art

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It’s been a while since I have shared a straight up report on my cross-country treks for medical care. I made my initial visit to Philadelphia, Trek # 1, the first week of April 2013  – a pre-intake intake, hoping to position myself, finally, for admission into the Autologous OC-DC Vaccine Phase One Clinical Trial. I had pursued entrance to this trial for the prior 20 months. We had heard a lot of “no’s” but now we were hearing “yes, maybe.” My cancer was looking stable enough to gain me entrance even if I was still amid my first recurrence. Eleven months later, still amid my first recurrence, it was time for Philly Trek #14, Treatment #10.

Often I have felt like a performance artist when completing my Philly Treks. Now, I model the courageous patient, now I crumble in a hospital bed, and don’t look now, because here the heroine, me, weeps on a crowded bridge as she shakes and vomits up her pathetic orange juice in the fresh snow – again and again and again and again, leaving a small and dainty pattern of no great offence. I, the artist, then continue on towards my housing and a new day that can only be better.

Performance Art

Performance Art

Trek 14, the February trek described in the paragraph above, was not dainty. It’s start was delayed a week by a last minute call from UPenn telling me to find new flights. My luggage already stood packed at the door as I awaited my ride to the airport. A bodacious storm (adjective lifted from one weather forecast) was predicted for the final day of my scheduled treatment, a day that requires a team of ten exact people to be at their posts. The Philadelphia weather projection made complete attendance unlikely. Cancelled, I was.

There could be no complications for my new treatment dates the next week or I would be out of compliance with the trial. Weather forecasts looked good at all ends of my travel but the night before my early morning flight to Philly an airline email informed me both flights were cancelled. I got the last seat in the last flights of the next day, feeling lucky, until I arrived at the Denver airport to see FLIGHT CANCELLED in the monitor. Yes, three flights cancelled in less than 24 hours and the weather was mighty tame. I rushed for assistance only to find not only no assistance but also rudeness. Southwest Airlines, I learn, does not shift you to another airline – and their next flight out to Philly was in 36 hours – too late for me to meet the chemo requirement. When I tried to engage them in problem solving (possible flights that might get me towards Philly on their airline) they said “no” and literally turned their backs on me. Oh my.

Only MY flight cancelled!

Only MY flight cancelled!

While a friend, just completing her own not fun medical procedure, stepped in to problem solve options over the phone, I still felt alone and very, very stressed – this was happening on top of a full week of travel stresses. After an additional $500 of expense and a few tense hours later I was set for the only remaining flight to leave the Denver airport for Philadelphia that night. It was on United and I arrived so late that the trains had stopped running requiring the additional expense of a cab. I was a wreck.

I showed up to treatment the next morning already sick with a migraine. My health did not improve but I did value the team’s dedication to easing my pain.

I decided the rigors of travel on top of treatment just might be too much for this gal.

I have testing and results along with my March treatment – always a dicey combination. My sister volunteered to fly in. It should be a great time to assess. My lab work continues to insinuate disease progression. My December tests were highly contradictory. Maybe this month’s results will offer clarity, always welcome.

What will the tests reveal?

What will the tests reveal?

I have had enough time and new information to feel calm with any outcome.

I am tired of travelling cross-country for monthly medical care and, luckily, this isn’t an endless drill. I either close out Part One in the near future, earning a travel break, or it’s time to move on to Part Two. The adventures of Part Two, T-Cell Infusion, dull travel concerns since I will be grounded in Philly until recovered which could take up to six weeks.

So, stay tuned for what comes next.images-2

Immunotherapy Rocks

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cover-enclosureImmunotherapy rocks or, in the more restrained but equally enthusiastic language of Science Magazine, “Cancer Immunotherapy is the Medical Breakthrough of 2013.” From a press release,

“The editors of Science magazine picked cancer immunotherapy as 2013’s major medical breakthrough achievement. Cancer immunotherapy is the use of the immune system to fight cancer. This is done by stimulating the patient’s immune system to attack cancer cells. According to an article on NewsObserver.com, “Scientists have thought for decades that harnessing the immune system to battle tumors should be possible, but it has been incredibly difficult to make it work.”

“So far, this strategy of harnessing the immune system to attack tumours works only for some cancers and a few patients, so it’s important not to overstate the immediate benefits. But many cancer specialists are convinced that they are seeing the birth of an important new paradigm for cancer treatment,” said Tim Appenzeller, chief news editor of Science magazine (1).

Cancer researchers say that they “have turned a corner because two different techniques are helping a subset of patients. One involves antibodies that release a brake on (or stimulate) T cells (a type of white blood cell), giving them the power to tackle tumors. Another involves genetically modifying an individual’s T cells outside the body so that they are better able to target cancer, and then re-infusing them so they can do just that. (2).

I love being cutting edge but I love more the prospect of living with this disease versus dying from it. As a cancer patient who has experienced treatment that didn’t work (scary!), the jury stays out on how I will respond to immunotherapy. My fingers stay crossed.

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As the Science Magazine experts themselves debated,

“In celebrating cancer immunotherapy—harnessing the immune system to battle tumors—did we risk hyping an approach whose ultimate impact remains unknown? Were we irresponsible to label as a breakthrough a strategy that has touched a tiny fraction of cancer patients and helped only some of them? What do we mean when we call something a breakthrough, anyway?”

But then they went on to say, “Ultimately, we concluded, cancer immunotherapy passes the test. It does so because this year, clinical trials have cemented its potential in patients and swayed even the skeptics. The field hums with stories of lives extended: the woman with a grapefruit-size tumor in her lung from melanoma, alive and healthy 13 years later; the 6-year-old near death from leukemia, now in third grade and in remission; the man with metastatic kidney cancer whose disease continued fading away even after treatment stopped.

As the anecdotes coalesce into data, there’s another layer, too, a sense of paradigms shifting. Immunotherapy marks an entirely different way of treating cancer—by targeting the immune system, not the tumor itself. Oncologists, a grounded-in-reality bunch, say a corner has been turned and we won’t be going back.”

The full text of their thinking is fascinating and worth a read. It is time to celebrate the promise of immunotherapy.Unknown

To access my clinical trial took endurance. I not only had to be clinically stable but I needed to countdown to my start date for Medicare, a wonderful government run insurance plan that allowed me to have costs covered even if my care was in Philadelphia. Effective January 1, 2014 the Affordable Care Act (which contains many great improvements even as the rollout leaves us cursing – Oregon being one of the worst states for enrollment fiascos) removes barriers for cancer patients choosing to access clinical trials in state or out of state. Please check out this boring but highly informative webinar that explains cancer care and the affordable care act to look at the list of ways your treatment obstacles may be being reduced right now. Spread the word.

If you know someone seeking a clinical trial I direct you to this resource that I first posted last July.

Finding a Clinical Trial Just Got Easier BY JON GARINN

By almost any measure, clinicaltrials.gov, the website administered by the National Institutes of Health, sets the standard for providing public access to comprehensive information from around the world about research on experimental treatments for an array of diseases and conditions. Yet, despite more than a decade of efforts to improve its functionality, simplify access to its database and synthesize its information, navigating the site can be a challenge.

That’s why a Florida doctor teamed with healthcare professionals from dozens of medical centers, research institutes and medical schools to develop MyClinicalTrialLocator. MyClinicalTrialLocator.com, a site designed to make searching for a trial easier.

Designed for patients as well as medical professionals, the site not only utilizes the government database for clinical trial information but also includes important updates from medical centers conducting the research and enables users to search for trials anywhere in the world. In addition to studies of drugs and medications, the site also details studies of medical devices, procedures and interventions, and lifestyle factors, such as nutrition, diet and exercise. Users simply enter the name of their condition, their location and the distance they are willing to travel. Listings provide a plain-language summary of the trial, including recruitment information, eligibility criteria and contact details.

The service is free, and access is open to any user, though visitors are encouraged to establish an account so that they can save their searches and receive customized email updates and automatic notifications based on their search criteria. To learn more, visit MyClinicalTrialLocator.com.

There is also http://www.cancertrialshelp.org/cancer-trial-search/.

Go find the best match for you or your loved one.  xo marcy

Philly Trek # 10, Treatment # 6

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October’s trek to Philly was hard, as I feared it might be. My initial treatment in this trial back in early June 2013 had been my most challenging and now I was returning after a 55-day break. My body might just resist fresh toxins being introduced with a loud “Hell No!”

I am now in the maintenance phase. I get the same chemo cocktail, at the same dose followed a day later by the same vaccines but now on a four-week schedule versus every three weeks. This sequence happens for three months and then I get tested to ensure there is no disease progression requiring redirection into Phase Two. I hope to do this maintenance phase for at least the nine months for which we have the needed material (my tumor to mix with my dendritic cells). But I also hope the next eight months are easier!

My flights presented some sleep challenges – I arrived at 2 a.m. I awoke again at 7 a.m., very little sleep for this delicate unit. The chemo infusion was full of delays. I returned back to my borrowed condo, crawling into bed at 7 p.m. feeling tired and off. I awoke at midnight to blinding head pain, stumbled to the bathroom and preceded to vomit for the next twelve relentless hours.

The Philadelphia Chamber of Commerce, no doubt, was glad when I finally left town. My walk through downtown for the next day’s treatment included stops for further retching. I like to imagine I cast an elegant figure in my red boots, stylish skirt, tucked behind a well-placed Canada Dry delivery truck, sitting on a planter wall, leaning over as if fascinated by some plant discovery quietly voiding my quite empty stomach. I didn’t linger to ask. Once semi-stable, I continued towards my final treatments of this visit.

The vaccines were a piece of cake, thank you. I felt too lousy to exert extra energy to tense up in anticipation of the needle’s journey. When I was officially done, the team decided to infuse me with saline to replenish my fluids making the long flights home less burdensome to my depleted system. Since I was all about sitting anywhere, another shift in a chemo lounge chair seemed most divine.

Trek number ten ended with me home in my own yummy bed by the early hours of the next day. It was all just fine. But no photos or extras for this post.

End of Study Results: Great, Decent, or Just Sigh

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It’s been 3 ½ years since my terminal cancer diagnosis and I still hold out for the letter clearing the whole misunderstanding up. “Ms. Westerling, we apologize for any confusion. It seems like we got some images hooked up with your case file that were just, well, wrong; you are fine. Have a good day.”

My friends are ready to celebrate good news but the only good news I want is a full and complete retraction. Anything else feels like celebrating a delay in the inevitable. I know this attitude makes me an ingrate so do me a favor and don’t spread the word that I am unsatisfied.

This morning I finally tracked down my phase one end-of-study results. The lead up looked promising and I assured myself that the delay in the final details didn’t matter because, clearly, I am trending in the right direction. But judging by my response to the official ‘good news’, I was holding out for better.

Would I have been happy for the best-in-show possibility of No Evidence of Disease (NED)? A result that never denies that microscopic ovarian cancer is floating about. Or would any result in this relentless new life path of staying alive despite cancer have reminded me of how harsh this life path seems. (Psst, I want my old life back!)44678_258047887658324_1806155451_n

A growing debate gained volume this summer over relabeling some types of lesions out of the cancer lexicon. It lead to some juicy headlines that crossed my screen. Maybe in lieu of the letter I imagine arriving any day now, I could just rebrand my cancer. But that hope was dashed as well.

Now that I have had my wail, I must recalibrate to the small miracles that I am allowed. They add up. They extend life. They are worthy of celebration. My job is to adapt.

The End of Study results show that my volume of cancer has decreased but remains visible. The best I can get towards quantifiability (is it the size of an almond, the head of q-tip?) is this – I entered the study with a volume of 405, now I am at 44, a hefty and measurable drop for my loved ones to celebrate. I might just need a few days to stay grumpy at the 44.

In the meantime, Herman Wallace, after 42 years in solitary confinement, is released to die as a free man. Wallace2He is in the final days of liver cancer. What seems a bittersweet victory might be much bigger for him or so I hope. I wish him an end in some lovely, sunny field surrounded by the many who stayed by his side over the four decades rather than the hospital he is liberated too. But mainly I hope that breathing in his final breathes as a free man heals the hurt of injustice. And this I will celebrate.

Home Again

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After 12 full days on the road this September, I am quite happy to be home as an early Fall storm gusts outside. The travels were bookended by two appointments at UPenn.  My second and final apheresis pumped out then returned a full 15 liters of blood through the jugular vein in the neck.

Aphereis Blood Necklace!

Aphereis Blood Necklace!

A Dendritic Cell

A Dendritic Cell

This process allowed extraction of my now theoretically educated-via-vaccines dendritic cells. I did well but had a lot of vertigo over the next week as my body recovered from such dense draining. The dendritic cells were hurried off to the lab for storage until I enter the Phase Two section of this trial.

And I hurried off to vacation. First stop my brother’s rural home in upstate NY in the small town of Freeville outside of Ithaca. There I got to catch up with family, enjoy some stunning weather and a few kangaroos and emus that are part of my brother’s ever creative interests.

Bro & Kangaroo

Bro & Kangaroo

photoAfter that lovely time, I was dropped off at a retreat site in the Adirondacks. We were greeted with the edict to ‘turn off your cell phones’ as we were now in a place of contained and sustained calm to allow the artists in residence to complete their projects.

Mike and I were honored to get a short stay with the fourteen others who were there for a month. Projects ranged from fictionalized looks at current day struggles in Zimbabwe and of veterans, to documentary films on things the public needs much more information on. Artists were operating in 4 different studios.  A composer was winnowing down and then rebuilding an opera capturing the true story of a 13-year-old Tibetan nun made prisoner after protesting for her countries liberation. This project particularly moved me for the depth of her trials, her happy current life and the reminder that suffering can be just fine. Several community organizers were a delightful addition not only to our own project but also to the fun as between us we had many shared connections to visit about.photo

In our week there formal readings and presentations from six participants took place. Shared meals, time on the dock and walks allowed ample time for stimulating conversation about the work of all participants.

I opted in to the morning tai chi and quite wish I could still pop out of bed and meet on the dock for the next round of cloud hands.photo

We feared visiting too early for the turning of leaves but the Adirondacks border Canada and had had plenty of cold to start the process – vivid reds, yellows and the full array of oranges, greens and browns unfurled a bit more each day. Breathtaking views in all directions. We arrived to the sound of a loon and the haunting cry stayed a constant for our time there.

Our departure was rude. We left at 4 am with a seven-hour drive down to Philly courtesy of my sister-in-law. Immediately, it was the chaos of getting the right tests in the right order. Despite being determined for the labs to be complete in one poke, I had to endure a second needle to the chest with seven more vials to fill. Grrr. Cat scans are never pleasant and UPenn requires the yucky double contrast for maximum imaging. Done, we had the official end-of-study (not really) visit with my charming doctor. Lacking test results we speculated on the various options, projecting that I would be tracked into the maintenance program allowing me to use up my remaining doses of vaccine (waste not!) but at a more leisurely travel pace of chemo then vaccines once a month versus every 2 ½ weeks. The 10 cross-country treks since this started in April of 2013 have been very hard on my quite run down body. On the other hand, this trial seems to be extending my life.

A Headache Here and A Headache There

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There is a side effect called avastin headaches, which I had hoped not to experience. But they seem to be here. I think they arrive from many directions. Some people get them because of the soaring blood pressure that results from the drug. Others get them, a very small number, because something so terrible is happening in the brain that I chose not to write about it. Others, like me (I hope) get them because the sinuses are so backed up.1785f-gullivers-travels

I started having frequent migraines when I was 12. In my late 20’s they became more full body, spreading out the pain in ways I found more tolerable. By my forties they were acceptable companions even if a three-day cycle (my norm) left me wrung out. With cancer and the removal of my ovaries, migraines lifted, touching down with rarity – a small silver lining in the new medical onslaught. But appreciated.

Nonetheless, it is always true that if my system gets thrown off kilter, a migraine is likely to pop up. Decades ago, I gave up on prescription relief; it might work once but rarely more often than that and so as ‘they’ arrive, I hunker down. When they visited with greater regularity I kept a list of work and home tasks to pull out for migraine periods, allowing me to stay productive in my more sorrowful state. My theory always was and stays, it’s not like I would feel better in bed.

Migraines also complicated my ability to separate out the symptoms of arriving ovarian cancer from my life with migraines. Bloating, nausea, gas are my life long norms. They are also what they say to look for if you have ovarian cancer but how could I notice. Maybe I could have been diagnosed at stage 3 vs. stage 4 but really with ovarian cancer, the horse seems to have left the barn at either stage.

When I first started on avastin a year and a half ago, I fast accelerated into major nose activity. It led to a pain I could only compare to what I would imagine of some junky overusing the nose. I was on the extreme end of that batch of symptoms. Every morning I would need hours to compose myself from the neck up. We should have bought shares in some Kleenex operation. My nose became a painful 3rd party in my life. It was 24/7 pain. By the end I was conversing with my nose, trying to ease its pain that then so violated my comfort. Then came the 45-day break from avastin as I transitioned to the Philly trial and when I started back up with the drug I waited for the nose problems. Weeks went by. Even with my new dose level higher, I just didn’t have the congestion chaos and the internal pain.

Not an easy fit in your nose

Not an easy fit in your nose

No matchbox machinery seemed to be at work in my upper nose. I started relaxing. I told everyone of my little miracle. It was great.

Then the headaches started, modest little sinus ones but often enough to report them as I am told I must report everything. Last visit my doc listened to me and said, “Ahhhh.” She had actually listened to all my complaints this long summer of visits and decided that instead of having an avastin miracle, my avastin woes had just been backing up, silently but to deleterious ends. She recommended a neti pot as my best bet. The other night, dullwitted by a tiresome round of sinus headaches leading to migraines and back, I made a 9:30 pm trek to Walgreens and returned home with my new blue genie pot. Within minutes of bending over the sink to allow gravity to pull the fluid from the one nostril to the next, I felt relief.

My neti pot!

My neti pot!

I continue to walk the path of head pain but I have hope that my daily use of the neti pot is healing and counterbalancing the avastin woes. I cross my fingers that my chemo this next Wednesday might be my last with avastin – it’s a long shot but a nice possibility.

Superpatient in Training – The Philly Chronicles – Trek 7

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How much long needles going into your non-numbed groin lymph nodes should hurt on a scale of 1 to 10 is negotiable. It does hurt. But mainly it vexes.

First, there is the waiting, as you lie exposed on the stretcher as the team assembles. Always, vaccine number one is being held in the air as the cast gathers. Why not hidden, nestled in its cooler with its sister? I don’t know. Then there is the small talk as I move my head in odd patterns to avoid seeing the needle. I was trying not to be obvious but by vaccine round four everyone knows I hate seeing the needle, not that that keeps it any more hidden. The radiologist is always the last to show, the lights go out and everyone stares at the ultra sound screen. Half the cast watches silently as the doctors negotiate over possible lymph nodes to target. Sometimes it takes a while for a lymph node even to be found. They look at the screen positioned across my belly, a screen that somehow lets them know where to insert the needle into my body below. Everyone judges the accuracy in this mapping negotiation by staring at the needles journey on the monitor – many opinions, one doctor with the needle, though. It is not a fast process. Eventually there is agreement that we are in a node and then, phew, we are done on that side.

It is important not to flinch because then we need to start over and I am a flincher! I try different tricks to anticipate the modest discomforts, to avoid flinching. Closing my eyes does not work. Imagining me on a beach in Maui does not work. Staring at the screen, talking myself through the needles arrival with its small allocation of pain helps. As does reminding myself that this does not need to please me.

There is an expression in Italian I have always loved, “Non mi piace.” It does not please me. I have found it a useful phrase over the years mainly for self-calming as compared to effective communication.

In 1989 I was on a work brigade to Portland’s sister city in Nicaragua, Corinto. The US was at war with Nicaragua. It might have fallen into that category of secret, dirty wars that many in the public miss, but regardless American taxpayers were funding the bombs that were falling. The brigade was to honor the memory of Ben Linder, a young Portland engineer recently assassinated while installing a water system for a small Nicaraguan village. Corinto is a port city sitting on a lovely stretch of open beach and ocean. At the time, all the fishing boats listed uselessly in the harbor. War damage.

The setting should have been enticing but it was not. We were there to work on the hospital. The open-air structure was well worn before the struggles of war. In the initial tour, I appraised the scene and decided I did not want to end up a patient here. The once sophisticated sterilizing equipment was now hauled to an outside fire pit. The surgeon talked about the daily power outages and what that meant with no back up generators and a patient open on the table. Chickens walked inside and out.

I had prepped for the anticipated vigor’s of the brigade by building up my physical strength, not learning Spanish – I had a naïve assumption that my knowledge of Italian would carry me. It did not. My host family was a mother and daughter. They welcomed me into their home, vacating one bed as they shared the other for my visit. A bowl was placed on a stool in the middle of the bedroom at night for toileting. The bedroom door was then locked barring us exit to the courtyard outhouse.

I was far too shy let alone confused by the bowl on the stool to use it. And the outhouse was far from enticing even if it was not an option at night. To boot, there was an incredible lack of potable water in the city due to a bomb hitting the cities main supply line. I decreased my drinking to solve all problems at once. Each day I felt a little less well. One day I felt awful and came down from the roof we were working on to collapse in the shade. It was the kids who realized I was seriously ill as they kept touching me and saying, “caldo.” They alerted adults who moved me into the doctor’s lounge for immediate treatment. My temperature was 105 and I was in preliminary kidney failure because I was not, in fact, drinking enough.

But when they came at me with an IV I remembered my resolution not to need treatment in this hospital but the only words that came to me were, “Non mi piace.” It’s a great phrase but not for communication outside of Italy. After a few days of fluids I was fine and learned a few more tips of self-care even in a war zone.

Back in the United States in 2013, far from any war zone, vaccine round four happened the first week of August. A friend had made me a pair of superman underwear for this round. It seemed borrowing some superpowers might better get me through this process. Vaccine four, I was ready. Two women get vaccinated each day and I had warned my partner of my plan at chemo the day before. She parents a toddler and so was easily able to pledge to wear her own pair because, in her house, every day, they are all matching superheroes! So me in superman undies, she in her superhero of the day, were ready for the vaccine process. Both of us agreed after it was our easiest round of vaccines yet. And that pleases me no end.

Superpatient Panties

Superpatient Panties

The Philly Chronicles – Trek 6

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The Philly Chronicles – Trek 6 (out of 10 mandated to complete the first phase of treatment – 5 for actual treatment. Clinical trials are not easy work.)

People often tell me they pray for me. I figure that is good because any pull with any gods can’t hurt my situation. I, myself, am fairly nebulous in my belief system. Raised an atheist, it always seemed hard to develop an otherworld view that included throned figures in the clouds. On the other hand, I have never seen the value in discrediting options. If it ends up there is an actual heaven and hell, I am quite sure where I want to go. Wouldn’t it be lovely to be surprised with Elysian Fields showered in sunlight or a new home amongst such billowing clouds?

A recent study revealed people who prayed for others benefited themselves, a nice outcome, albeit less for the person prayed for. In my agnostic way – open to everything, rejecting little – when folks offer to pray for me, I thank them sincerely.

On the plane this last trek my seat companion was a former seminarian. He introduced himself with handshakes to both seatmates, he helped out every distressed passenger within reach and when he realized my sorry plight he offered to pray for me and I said, “how nice.” I was not ready for what came next. Glasses removed, hands held out palms up, with the voice of an almost priest he intoned a most respectful prayer for my best outcomes. It felt a bit like Reiki. I loved the caring but was quite conscious of the odd scene. (An almost priest’s voice is trained to carry and a plane is rather small.)

And so I started this trip prayed over, a quality way to deplane to the “extreme heat emergency” that gripped the Philadelphia area. The nighttime lows were projected at 82 degrees. The daytime highs with humidity were in the low 100s. Philadelphia is not a green city. Parks are few and trees scattered about creating a slight canopy. It is a city of concrete.

The heat emergency cramped my style emotionally and actually. I have never tolerated humidity well. With an excessively fair constitution I have learned to dodge sun from an early age. I always mean to buy a parasol (wherever do you get them?) but an umbrella works just fine when I have no choice but to walk in the heat of the day. And so I marched around Philadelphia with the exception of one late afternoon commute where I hopped a bus for an air-conditioned ride home.

The treatments themselves roll along, the less thought about the better. The chemo leaves more nausea then I am used to and the big needles to the groin lymph nodes well, really, could they ever be pleasant. This is just what I do when in Philly.

I am now over the half way mark – two more treatments at both ends of August, and then two close out visits in September mark the formal end of Phase One but not of Penn treatments.  What comes next was a topic of conversation with the staff there this visit. I would presumably go into either maintenance therapy once a month until the vaccine material runs out in a year or Phase Two, which is a little more dramatic then I had understood. Phase Two kicks off with three days of back-to-back chemo, then two days of shots, then a transfusion of my jacked up t-cells extracted during my second Apherisis scheduled for September 16th, 2013. I would then resume the every 2 ½ week travel cycle for an unknown period of time. Currently, entry to Phase Two is by waiting list and triaged need, as they are at capacity. I find out in late September, post a day of testing, which route is seen as best for me. If I go the maintenance route, when and if I recur, I automatically start Phase Two procedures.

Oregon Bliss

Oregon Bliss

Since returning home to Oregon’s lovely summer temperatures with no humidity, I have watched Philadelphia mellow out with nighttime lows dipping to 61. I have not had great travel luck. I should focus on the big things (please cancer, go away!) but honestly the small things matter, too – flight delays and egregious weather. If you cast a prayer my way perhaps you can take the big and the small into account. I continue to use my favorite prayer, the serenity prayer, to remind myself to let go.

xoxo marcyprayer

Do Clinical Trials Work?

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Do Clinical Trials Work? (Spoiler alert, this ends on a positive note. Cancer patients don’t need any more bad news!)

Clifton Leaf studies cancer treatment. He wrote “The Truth in Small Doses: Why We’re Losing the War on Cancer – and How to Win it,” a book just being released this month. It is billed as:

 A provocative, eye-opening history of the war on cancer, The Truth in Small Doses asks why we are losing this essential fight and charts a path forward.

OVER THE PAST HALF CENTURY, deaths from heart disease, stroke, and so many other killers have fallen dramatically. But cancer continues to kill with abandon. In 2013, despite a four-decade “war” against the disease that has cost hundreds of billions of dollars, more than 1.6 million Americans will be diagnosed with cancer and nearly six hundred thousand will die from it.41PVbdWV4nL._BO2,204,203,200_PIsitb-sticker-arrow-click,TopRight,35,-76_AA300_SH20_OU01_

A decade ago, Clifton Leaf, a celebrated journalist and a cancer survivor himself, began to investigate why we had made such limited progress fighting this terrifying disease.

Timed to the book’s release he authored an opinion piece as the lead article in the July 14, 2013 New York Time’s esteemed Sunday Review section entitled, Do Clinical Trials Work?

I skimmed the lengthy piece so I won’t pretend any quality summation of his perspective but I do think he captures the moment we are in. The egregious cost of bringing any new treatment to market ($12 billion by one estimate) and the sobering failure rate of 95% of tested drugs not gaining approval, encourages drug companies to market each drug as ‘one size fits all’ cures. This correlates poorly with the huge advancement of these times – the realization of just how unique each person’s disease is and that personalized treatment is the way to go. Neither cancer treatment nor the drugs can be one-sized fits all.

Avistan is a great example of a drug marketed at great cost as a life-extender for many, many cancers. The drug costs a lot – so much that some countries like Britain have rejected its use multiple times because of the cost. Similarly many insurance carriers wont cover the cost. Proof of its effectiveness is pretty darn weak. Partially because it is a newer drug and you need time to prove that it keeps people alive longer and partially because, well, it might not be that effective; at least in the masses. There is evidence that in a small percentage of patients (I have heard as small as 3%) it could be a truly powerful life-extender. The focus should be in finding the 3% for this drug not in expending obscene sums of money to credential it as the standard of care for all patients. The drug is probably cost effective when matched with the right patient. But at that scale it might not seem cost effective to the drug company to bring to market. (Please note: Avistan is an angiogenesis inhibitor, a drug that slows the growth of new blood vessels to cancer tumors, hopefully killing the tumors. It is a drug I have been on for over a year and resisted starting it for the nine months prior despite knowing how ‘lucky’ I was to have insurance agree to pay for it. Avistan has hard side effects – surveyed women recently rated their quality of life on the drug as lowered. I would heartily concur. It makes us ache all over and reconfigures our nose’s interiors’, literally. And some of us fear it’s possible ‘blow-back’ where it may contain the cancer short term but when the cancer does come back, it is untamable.)

I bet you are starting to see the problem. Drug companies believe they can only realize profits (and remember their upper level pay scale!) if they mass market. Researchers meanwhile are now showing the breakthroughs in micro markets.

While the article casts a distressing assessment on clinical trials as a way to advance science and identify new protocols, it doesn’t disprove their value for people like me. When you have advanced, recurrent cancer of any type, you need to be on the cutting edge of treatments and or incredibly lucky. And lucky is not what most people with advanced cancer get noted as. Clinical trials have value. They give us, the patient, a shot at shopping for a better match for our situation.

It is important that patients consider what they need and how they can get it. Many patients assume that their medical team will figure this out for them but more likely, their medical team will offer them the standard of care of the moment. This may well include clinical trail options that have recently been announced or are offered at their institution but that is a poor way to match patients with trials. I have had excellent medical teamwork throughout my cancer journey and I still would not expect them to find the best trial for me – they work hard enough managing the best standard of care options for our dicey disease progression. This feels like reality amid the pressures of delivering medical care in 2013. It is the exception for a medical team to match patients up with the best trial options. It happens but when you are facing a terminal illness, such odds might not be good enough.

Given my personality, diagnosis fast led me to become a modified expert on ovarian cancer and cancer in general. My ‘expertise’ is regularly humbled in the face of other patients who seem to bring retention and some basic understanding of science to their own inquiry. Many of us cope by understanding what is going on. I have found peer-to-peer knowledge to be accurate and very helpful. Most cancers have websites that allow endless discussions on all aspects of dealing with the disease. (And yes, drug companies tend to fund them and, while not often, you will find a certain type of post gets disappeared quite fast – but that is another story.)

The point of this post is to encourage you to read Leaf’s article and book but not to get stuck in what is wrong. You don’t need to fix it, although you should consider helping out by becoming an advocate for improved practises. But what you should really, really do is know that you and your support team (best friends, lovers, family, co-workers) need to drive finding the best treatment options for your cancer, especially after you have recurred. There are tools to make this easier.

National Institutes of Health offers its comprehensive website at clinicaltrials.gov – but this is a site designed for the well trained. Luckily, for the rest of us there are many intermediaries to make the search easier. Here is a small update on one such tool from the Summer 2013 edition of Cure Magazine. http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/2139

Finding a Clinical Trial Just Got Easier

BY JON GARINN

By almost any measure, clinicaltrials.gov, the website administered by the National Institutes of Health, sets the standard for providing public access to comprehensive information from around the world about research on experimental treatments for an array of diseases and conditions. Yet, despite more than a decade of efforts to improve its functionality, simplify access to its database and synthesize its information, navigating the site can be a challenge.

That’s why a Florida doctor teamed with healthcare professionals from dozens of medical centers, research institutes and medical schools to develop MyClinicalTrialLocator. MyClinicalTrialLocator.com, a site designed to make searching for a trial easier.

Designed for patients as well as medical professionals, the site not only utilizes the government database for clinical trial information but also includes important updates from medical centers conducting the research and enables users to search for trials anywhere in the world. In addition to studies of drugs and medications, the site also details studies of medical devices, procedures and interventions, and lifestyle factors, such as nutrition, diet and exercise. Users simply enter the name of their condition, their location and the distance they are willing to travel. Listings provide a plain-language summary of the trial, including recruitment information, eligibility criteria and contact details.

The service is free, and access is open to any user, though visitors are encouraged to establish an account so that they can save their searches and receive customized email updates and automatic notifications based on their search criteria. To learn more, visit MyClinicalTrialLocator.com.

There is also http://www.cancertrialshelp.org/cancer-trial-search/.

Go find the best match for you or your loved one.  xo marcy

Surviving Recurrent Ovarian Cancer

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There is no recipe for staying alive with advanced, recurrent cancer – and ovarian cancer by definition tends to be advanced and recurrent. Alas. Luck seems to be the only constant in outliving the odds. My luck hasn’t seemed great of late as my first recurrence has involved a year of running through various chemos until low dose taxol brought me enough shrinkage and stability to start Phase One of a clinical trial at the University of Pennsylvania. I now travel cross the USA for treatment every two and a half weeks. Is it crazy to still feel so alive?

Why not feel alive?

I completed my fifth trek to Philly and second round of treatment this past week. Outside of the city being beastly hot, there are no riveting ups or downs to report. The thunderstorms that shut down all flights just as my plane backed onto the runway sucked but that is Mother Nature and my poor relationship with the gods of travel stepping in again. For an Oregonian, though, this new constant of daily thunderstorms most afternoons is its own form of excitement – Western Oregon averaging a mere three thunderstorms a year.

The routine is becoming just that. My sister, an emergency room doc and 18-year survivor of stage 1 ovarian cancer, travelled in to greet me. She is the big sister despite her smaller frame – 18 months my elder. Living far away with her own life of demands, our rendezvous in Philly allowed her to treat me to a vacation while holding my hand, at times literally, during treatments. As someone inclined to do it all solo, it was a lovely treat. Especially the finger to squeeze and the voice to soothe as the two vaccines to the groin searched out deeper lymph nodes to inject this time.

photoVacation meant strolls and delightful meals out in Philly, the city beyond hospitals.

A sister meant no luggage to schlep. A sister meant all needs all the time were met. A sister meant no need to explain or entertain, we could just be. My prescription for nausea was filled while I stayed being infused. Lovely. Although that did mean I navigated the fire alarm alone. The alarm droned, “this is not a drill” with flashing blue lights, while failing to say what you do when it is not a drill. Everyone in the ward was tied to toxic chemicals. It is a large building. The answer seemed to be for the staff to close you in your single room. Such solitary confinement never goes over well with this gal assigned a windowless chamber. So I left, found a lounge window ledge to sit on, infusion equipment in tow, and watched the fire trucks arrive. My last treatment overlapped with the collapse of a downtown building and the 12 survivors being brought to this center. I am getting used to the secondary dramas unfolding in a large urban hospital.

My ‘vacation visit’ with my sister was over too soon. I don’t know how to survive recurrent ovarian cancer but I do know enjoying the moments probably does not hurt. Hopefully, getting into one of the most exciting clinical trials of the times will help as well. Stay tuned!

A Dream Team for Everyone

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June is Cancer Immunotherapy Awareness Month, at least as declared by the Cancer Research Institute (CRI) and the New York State Assembly. What better time to become educated on immunotherapy and the ways it may change both treatment and outcomes for cancer care. The words of one cancer researcher reminds us, “It is always ten years too soon to get diagnosed with cancer”; breakthroughs being too slow and rare especially for those of us with advanced disease. But there are reasons to believe that immunotherapy may provide positive changes for cancer care in the very near future. Increasingly, Phase One trials are showing high response rates in a range of cancers with a range of immunotherapy approaches.

Many people rightfully worry that a Phase One trial means that the approach is just being tried on people as compared to the poor mice. This can be true. It is also true that Phase One trials often build on other Phase One trials creating a thoughtful process of incrementally testing new therapies on humans. There are risks but the risks when taking on experimentation with immunotherapy are different then the risks in testing a brand new chemotherapy drug. Chemotherapy harms the body while trying to tame cancer. Immunotherapy’s approach, though, is training up new skills in the immune system – maybe the lessons will take, maybe not but little damage should happen in the effort.

Stand Up to Cancer (SU2C), funds Dream Teams among the top researchers in different arenas of cancer research. They aim to improve the pace of breakthroughs by funding collaborations. One of these teams focuses on immunology. This infusion of dollars from the entertainment industry and grassroots is valuable at a time when congress is forcing significant cutbacks and uncertainty in cancer research. Almost every cancer has an immunotherapy approach being tested.

If you know someone with advanced cancer, even in remission, now is a great time to share this link – they match people up with prospective trials for them to consider. http://www.cancerresearch.org/cancer-immunotherapy/clinical-trial-finder

To learn more about the experiments in motion from the experts themselves you can find a roster of recent webinars hosted by CRI to celebrate this month of awareness.

Let’s kick off a period of good news in cancer treatment. PLEASE NOTE: At the close of 2014, Stand Up to Cancer announced the establishment of a Dream Team for Ovarian Cancer. Go team go!

The First Vaccine Treatment

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The Philly Chronicles – Trek Four, Part B – The First Treatment

The terrain of hope is rocky. My excitement to start the treatment phase sustained me through an uneventful flight from Oregon to Philadelphia. I went from plane to train to the hospital campus to meet an incoming candidate for dinner. Her medical intake had started that day at 9 a.m., making our date for 5:30 seem reasonable. She emailed a series of apologetic notes of delay finally being released from her day of screening tests at 6:15. I recognized her easily by the bandage showing where she had last been punctured. A shared meal of falafel from one of the many food carts was delightful as we exchanged information, motivations and snippets of life stories – cancer serving as the frame.

We bid goodnight and I began my two-mile walk towards my housing with regrettably over packed luggage. Hip and knee pain had me whispering ‘ouch’ with every step. The walk is wonderful, though. The first quarter crosses the smaller of the two rivers that encases downtown Philly. While crossing over the Schuylkill and the expanse of expressways paralleling the river there is an amazing view of down town, a striking skyline. At dusk there is a line up of folks taking photos. The next stretch is dense city, mixed residential and commerce, the standard three stories allowing peaks of the skyline on the left.skyline

The following 7 blocks are not too exciting but then the street life starts accelerating. It is not a boring walk. Public art is everywhere. You can walk the same city block many times finding new things to admire between people watching, architecture and art. Murals dominate. As a quilter I am quick to note that the majority of quilts and murals are, frankly, not too exciting. In Philly I have yet to see a mural that has not met the mark for art. They tend to be three stories high and broad and from what I gather the Philly mural project has engaged a long-term team of artists to guide the community process for each site. The commitment to art and storytelling fuses brightly in Philadelphia. mural

In no time, I am at my own structure, juggling luggage, keys, and memory to get in the door, up the three flights and then, ‘Hello, roomie – I’m back!!!!”

June 5, 2013: The next morning I was to report in at 10 a.m. I was reluctant to end my long night of sleep – the bed felt too good. Twenty minutes before departure I got up forfeiting food shopping in favor of a quick shower. I should be done early enough to meet food needs. The walk was slow – my aching joints create a pacing that I am still not used to. Nonetheless, I arrived on time.

My handler was there by 10:05. The screening vial of blood was in motion by 10:15 but that would be the last thing on time for the day. Things started going awry. The person that normally did the physicals while patients were being prepped for the infusion was off. I needed to abandon my chemo post and relocate for the doctor. The doctor was busy. I was set in a typically dour examination room to wait and wait I did. After 15 minutes I opened the door to mitigate the stress of the confined space. After 30 minutes time started passing dramatically more slowly, then 45 minutes, then 60 minutes – tension settled in. I was now taking a roller-coaster plunge into the darker side of hope – despair. Why was I here? What life was this? I distracted myself by listing all the remaining things that could go wrong that day sidelining chemo, putting the scripted protocol off kilter and exiting me before even starting this foolish Phase One path.

The charm of the arriving doctor evened things out some. The exam was done in minutes, I was cleared for chemo and a new nurse sent me back to the chemo-waiting lounge. Like I knew where that was in this inner maze of the building. I stumbled back, unraveling. It was now past noon and it was clear that these accumulating delays meant that I needed to find food before I was strapped into my chair for god knows how many hours. I also needed to breathe a moment of fresh air of the delightful day outside if I was to regain calm.

I got a small bite to eat in the sunny warmth then reported back in only to be told, “sorry, there are computer problems preventing your clearance for chemo from showing up.” I convinced them to call me when the problem was resolved and ran outside. I found a patio that allowed me to stay close to my bank of elevators but enjoy a sense of normalcy. It would be ok, I kept assuring myself.

The call came clearing me and at 2:00 I was being seated in my chemo room. The next struggle presented itself. One of my infused drugs, a drug I hate and have had for over a year, would need to be infused over 90 minutes instead of 30 because they insisted on treating me as if I had never had it before. That was absurd. It was getting late. I challenged the edict requiring phone calls. Meanwhile the nurses were being sprightly in hearing me beg them to get my port accessed, start the pre-meds and leave me to the negotiations.

The nurses were wonderful and did their best to zip my infusions through but the mandated avistan drip speed from 30 to 90 minutes held firm because of the stupid research protocol. I hate rules based on weak footing. Someone showed a lack of imagination when crafting that section, and I lose another 60 minutes to hospital life. It adds up.

But protocols, once written, cannot be changed with ease. A research protocol risks termination with every change. I got to fume at what I experienced, which is genuinely frustrating, knowing when calmer that it is just the architecture of checks and balances within research. It is what you sign on to. Hope and frustration!

Infusion done, released, I delight at the smells of a tree in bloom. I breathe in life. Outside I am content, confined I agitate. Computer systems went down, the wrong people had a day off and the relentless rules that indicate you are the property of research combined to make my first infusion an all day affair. It was a beautiful day just as it was beautiful the day I flew. It’s summer, time to be outside but not for this research subject. I am relegated to the various benches for the permanently waiting.

Vaccine day – June 6, 2013: I trudged back to the research building. This day was cool and gray. Without the usual cushion of steroids infused with yesterday’s chemo, I felt gray as well. (Steroids are barred since they suppress the immune system and this trial is about building the patient up.) I had not experienced this level of exhaustion for quite a long time. Dressing that morning required breaks lying down.

The vaccines were a big moment, I had worked for 20 months to get to this point but having emotions was beyond me. I was too tired. I arrived to my waiting area the required 30 minutes early. The Paris Open on TV held my attention as I also tracked the room. Not many people, in fact just one other woman roughly my age quietly speaking with a friend. Hmmm. I peaked to see if she had the same envelope I did but nothing showed. The doctor came out saying, “Good, you are both here.” He graciously came over to me, the vaccine first-timer, to shake hands and assure me this would be easy. Then he took time with the other woman. As soon as he hurried out “to get things started,” we exchanged names and emails before we were whisked to our different rooms. She was the patient enrolled immediately prior to me, the second in our cohort. There was little time for other details as a parade was starting.

At the head was the ever-cheery Dr Tanyi, then support staff with coolers, clipboards, then rolling machines. We were told to get in line as we walked down a hall to a new section of rooms. The other woman urged me to go first knowing that first time jitters would only settle down once it was done. I was ushered into a tiny room now filled with parade participants plus some new folks. I didn’t know what to do until someone indicated that I should get in the bed. A bed, I hadn’t expected that. Given my exhaustion the sight was most welcome. I was shaking hands with old and new staff while trying to maintain some dignity as they all formed a tight, tight, tight semi-circle around me. (Think room as small as an elevator now including a bed, equipment and 8 people.) My lead nurse was holding a large syringe in the air. I make it my business never to look at needles but in this tiny room it loomed large. The other one must still be in the cooler.

I lay down, draped with a blanket as I scooted my skirt down. The doctor kept patting me saying, “This will be just fine, you’ll see” then quickly turning to a peer, narrating the process. She was being trained in, it turned out, to take over while Dr Tanyi was gone the next month. Damn, I don’t want her to be trained in on me! My undies were protected with napkins as goop was placed on my inner thighs. The ultrasound beeped to my right as we all waited for the radiologist to arrive. It was a long five minutes of trying to avoid looking at a needle held high – of trying to preside with grace as the centerpiece of the room. Radiologist in place, I fixated on the ultrasound screen wondering if we might find a baby but the search was for lymph nodes. “Ah”, I heard but I saw little amid the gray striated screen. When would the needle go in? Ouch, it was going in and that I could see on the screen. It was a slow process of everyone agreeing that it truly was in the lymph node and then that vaccination was done. Next side and it was now the doctor-in-trainings turn. I would have loved a sound bubble rather than hearing the list of do’s and don’ts as a much, much slower process started on my right. Was she in the node – were they really going to discuss this endlessly with the needle in me? Finally, the slightly more painful vaccination on the right was done.

The parade director put the sides up on my bed, and wheeled me from the vaccine room into another room for observation over the next hour. At 2:30, I was dismissed from the bed and faced five hours of walking around counting down until time to return for a blood draw. The weather had shifted with tropical storm Andrea arriving. I had a list of places to explore but my bag was heavy and I wanted to lie down. The University of Pennsylvania is a beautiful campus but there was no place comfortable for my post-chemo body for more than a few minutes. The temperature kept dropping. The clouds grew more ominous. I wanted a bed.

Eventually I got the 7:10 pm (protocol forgot to allow a window) blood draw and started my slog home in a drizzle wishing I hadn’t been so confident this morning that it wouldn’t rain. Home at 8, too tired to eat I went straight to bed sleeping until 9:30 the next morning. I awoke feeling better. In fact, my hip pain of April and May seemed gone. I was still tired with nausea but within acceptable limits. I relaxed with my roommate, packed then headed out for the final blood draw at 1:10 p.m. exactly. With all my luggage and tempestuous rains starting outdoors I grabbed the train to the airport. It was a direct flight home escaping just before the storm hit full force, arriving into the arms and care of my husband. Tired, nauseous but miraculously clear of hip pain – a benefit it seemed of the cytoxan chemo that, apparently, can be used for arthritis. My first treatment trek was done.

The Philly Chronicles – Trek Four, Part A

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Monday (6.3.2013) dawned gray in Portland rather then kicking off the predicted suite of sunny days. The forecast had been revised overnight. I have yet to give up trying to control the weather, a habit I developed upon moving to the rainy part of the Pacific Northwest. The rain is fine, the gray can be gorgeous but my disposition is for sunny and warm – I never tire of it.

May weather was especially harsh to accept after a remarkably dry and blue-sky winter and spring. This May ended up being the third wettest on record. And cold. The nation suffered big weather turmoil while we just coped with the grumpiness of winter weather in spring. So yes, I counted down to my one sunny Oregon day before bidding goodbye to fly back to Philadelphia – more planes, airports and hospitals in store for me. The sun did sneak out albeit a few hours late. I thrilled in its arrival.

Between chores outside I toured the different nooks that make up our small urban homestead. I love to greet the flowers, their beauty deserving a small shout out. I am less outgoing with the vegetables and fruits, the exception being our young apple trees promising an actual crop this year. We moved to the city when I got my stage iv cancer diagnosis three years prior, leaving behind our dream farmstead with my flock of ducks and the ever expanding orchards and growing beds my husband fed us from. We planned to grow old there. We lost several dreams with the arrival of cancer.

I never really went home post diagnosis. Dear friends literally met us at the emergency room where doctors were puzzling out my collapsed lung. It would take a week for diagnosis but after removing liters of fluid from my chest, they whispered in the hall to these friends that, ‘there was never a good explanation for a collapsed lung.” We stayed with these friends that rocky April filled with all hours of trips to emergency rooms and then the pronouncement of terminal cancer. We stayed with them in an ad hoc guest room for the duration of front-line treatment. It insured care and laughter during a bewildering few months for my husband and me.

With the cancer diagnosis I committed to staying strong and for me that meant easy (aka biking) access to medical and complimentary care and, frankly, the busyness that a city offers. Depression seemed a secondary threat. It was time to say goodbye to the greater isolation and distances of country living.

Our new home, small and perfect with a decent allocation of land, steadily took on the shape of our revised dreams. Two vegetable beds were squeezed into the side yard, then three on the sidewalk meridian, two community plots acquired nearby and the expansion continues, a source of shared delight. I know every square foot of it very well.

Monday, soaking up the sun in preparation for my flight, I discovered a hidden treat. We had pruned out some trees blocking the southern sky last winter, now rewarding the effort was the most subtle and stunning iris blooming where a few trillium lounged months back. I took a photo to take with me on my travels.photo

I start this trek (Tuesday – 6.4.2013) with excitement. Finally, I begin the multi-day process of treatment in this phase one trial. A chemo cocktail of cytoxan and avistan day one, vaccines to the groin day two, and for this first cycle – blood draws every 12 hours for an additional day. Then home where I hope the sun and the iris will still be holding court.

I travel with Roxanne Cousins. She died earlier this year at age 40 leaving a young son to do his best with memories. Roxanne and I both worked hard to qualify for this trial, sharing notes and encouragement along the way. After surgery she was told that she didn’t have enough volume to meet the damn criteria. She was determined to try again; to get in this trial; to buy some more time with her loved ones. The cancer claimed her before another surgery could happen. I pledged to keep her spirit with me in a trial that is too early on to promise miracles but those of us with ovarian cancer just seek time extenders.

The Sunday N.Y.Times (6.2.2103) covered the interesting challenge of HIV patients in the U.S. once short tracked for death while often in their 20s and 30s, the miracle arrival of their own cocktail and the problems they now face of aging after decades on treatment. They featured one such man who was extremely close to death when the call came about ‘miracle pills.’ Within weeks he was gaining weight and mobility. Decades later, he lives. What a concept. Imagining that process occupied my mind. Of course, he couldn’t know it was a miracle at the time but must have considered it as a weak possibility. How long did it take him to accept this drastic change of fate? Could he ever revel? Does it matter?

What terminally ill person has not awaited a clarifying call in the months after diagnosis offering a reprieve? “So sorry, but you really have this other more benign calamity to contend with.” I met a woman who got such a call – it only changed her from a stage 3c to 2b but in the terrain of hope that is huge. With this trial I enter the terrain of hope.

Part B to follow shortly…

The Philly Chronicles – Trek Three

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I have now completed 3 visits to Philly – all equal parts pleasant and hard. It is crazy to commute cross-country for medical care. I *hope* that my next five visits to Philly, which all involve predictable treatment, will be easier then the prep visits filled with the uncertainty of passing criteria. But these are the delusions with which I pattern my life – not that such optimism does much harm.

Anyway, after three cross-country trips in a month and a half, the clinical trial physical prep work is done! My next visit the first week of June is for treatment – travel the 4th (sigh), chemo the 5th and vaccines the 6th. The first round I stay an extra 24 hours for observational blood work meaning that I travel home the night of the 7th. I have found April and May overwhelming with the travel tipping the scale.

I do feel relief to have to prep work done. The ‘dreaded apheresis’ was completed May 22nd at 2:30 pm. They only allow you a specific amount of time on the machine. I wanted to stay on longer to reach the high end of the goal of having had 15 liters of blood processed but the cut off time was marked with the arrival of the research staff to carry off the tiny bag of dendritic cells that go right to the lab for processing. Interestingly, I have since learned that the average female has 4.7 liters of blood in their body so the time is all circulating the same liters of blood to extract, extract, extract. My body generously allowed 13 liters to circulate, three more then the ten minimum needed. (As you can see, I do most research after undergoing the procedures but understanding a central line, I think I will avoid.)

Getting the central line was no fun. I relied on the information they provided that said it would be quick and uncomfortable versus painful. It is quick if you don’t count the serious prep time in the surgical outpatient wing and actual operating room. In some Merriam Webster dictionary way it might qualify as uncomfortable but in the real world of being lashed down to an operating table 2000 miles from home, it is a way creepy experience made more disconcerting when they need to abandon their initial plan of ‘vein preservation’ (a heartening concept) and reverse the operating room equipment to accommodate the ultrasound showing that there wasn’t any vein to preserve on my right side.

Two realities made the procedure harder. My email went down for twenty hours. Worse yet, I had grabbed the wrong charger so despite keeping my equipment off to maximize battery life, I had no juice by the morning of the procedure. My sister-in-law, driving 4 hours each way from upstate NY to provide support was bringing me a cord but we first had to find each other.

The plan had been to meet at the Apheresis Unit in the hospital to spare Peggy the chaos of tracking my complex morning moves through different buildings. But, of course, I needed her support at surgery. She figured that out (Peggy is incredibly competent and cheerful!) but she was only able to snag me as I exited with my central line installed. Within 30 seconds we were laughing and on our way to the waiting Apheresis Unit. (I could bore you with how to registration gal ‘lost’ my paperwork thus delaying the installation of the central line and increasing my tension but….you can imagine.)

Everything at the Apheresis Unit was easy. They know their stuff. The research team and they had interfaced perfectly. They have a very high staff to patient ratio. I had spent the week prior being perfect in what I put in my body. Peggy showed up like a salesperson for naked juices – one in every color, which I dutifully drank down. They opted (based on labs?) to infuse throughout different extras like calcium rather then waiting for possible mini-crisis’s. It was pleasant outside of the modest discomfort when talking and swallowing. I tried not to resent the window with the great view of downtown Philly in the sunshine being blocked by my bed. (Why do they do that?)

They informed me that I was extruding the perfect color of cells so that cheered me on. They knew I was flying out that night and did a lot of additional care to assure that would be fine. (Although it was not entirely confidence inducing when they packed a little post-care bag equipping me to staunch any blood flows and when I asked what I should do if I couldn’t stop the bleeding, they responded, “go to your nearest emergency room with your paperwork.” Hmmm….)

A mini-drama started two hours after boarding the plane. The weather in philly was wonderfully hot, my clothes were slight and my bandage was HUGE and mandated. I walk with a cane right now and always use a facemask in airports and planes as advised. My hat sports the cancer sucks button. I realized I looked worrisome both coming and going, as airport personnel stopped to ask if they ‘could help?’, I was escorted to the disabled line and wheelchairs were waiting for me at the close of every flight (I refused them but I did avail myself of the little trolleys for the first time.) So, I entered my first leg plane, as an obvious high need person. After the close of the first hour and a half on the tarmac, knowing I had a mere 45 minutes layover in Phoenix, I rang the call button, another first. The attendant came and I explained that I was a cancer patient returning from treatment and that I had a medical team in Philly and one in Portland but none in Phoenix and I did not want to spend the night in the Phoenix airport. They were vary accommodating but were clear on their limitations and gave me five minutes to mull if I wanted to deplane so I would be with one medical team. I was overwhelmed and knew that a. an off loaded passenger requires the re-inspection of all stored bags, a multi-hour delay and b. getting back to my host lodging was a decent undertaking for an exhausted person not allowed to carry anything for 24 hours and c. I wanted to get home. My seatmate, a man of roughly my age volunteered softly spoken council that would make any feminist proud. The flight crew was strong on encouraging if I had any discomfort I should deplane. I couldn’t have had better support. In the end, I decided to gamble that enough people now had my back that I would stay the course. The flight crew kept me posted, moved me to first class for the landing so I would be the first off, alerted the Portland flight and whisked me to the gate. The second plane landed only 10 minutes late. I was in bed with Mike at 3 am, 6 am philly time. What an amazing 24 hours in the pursuit of survival.

And all that night my sack of dendritic cells were in the lab growing into the marcy vaccine.

It is fun getting to know a new city. It helps that my guest accommodations are wonderfully situated for pretending I am on vacation. The condo is located on South Street near 12th – a central, fun, big city neighborhood. It is a row house befitting the city style and we are on the top, thus third floor. The terrace looks down on the street hubbub and this last trip, with bursitis limiting my movement, I adored leaning out over the block and creating storylines for the strangers I am getting to know through persistent observation. The extended family of three plus generations that runs the convenience store and seems to preside over the block – who parks where and when, with ample home cooked meals seeming to be the reward for following their rules. A nail salon and the day care center provide intermittent distractions that I am piecing together.

The lovely home setting complete with a warm host compliments the rigors of travel. Cross-country medical care may be nuts but amenities like these lull me into the pretense of being on vacation and, of course, you travel for that.

Onwards to more vacation the first week of June!

Warmly, marcy

p.s. snippets: I am finally noticing an abatement of my chemo induced shortness of breathe – yeah! I also greet the arrival of new hair filling in my scraggily scalp just in time for a possible new round of thinning as I start a new chemo drug with that side effect June 5th. I intend to return to full mobility in the next month or so. It’s been demoralizing to watch my chemo induced hip arthritis aggravate into acute bursitis but it too can be managed.

The Philly Chronicles – a start

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My ovarian cancer recurrence in October of 2011 condemned me to the predictable but somber reality of life in treatment. My care team and I selected the Penn trial as the hail mary pass best suited for me surviving longer in this reality. Frankly, there wasn’t an extensive menu of choices. Many other women reached the same conclusion creating a line of hopefuls since winnowed down by the ravages of this disease and hefty qualifications. This week, 19 months after starting the process, I signed the entry paperwork with very little fanfare.

The final countdown to entry allowed me the first moments to switch from ‘must get in’ mode to ‘holy shit, what the fuck am I doing’ mode. It hasn’t made the trial any less compelling, just made my ability to survive the rigors of cross-country medical care a concern. Anyone who knows me knows that I am the ultimate homebody. Additionally, I crave open windows and being outside. Airplanes, airports and hospitals are the worst form of punishment.

Now I consign my high holy months of summer and fall to endless air travel interrupted with endless hours in the hospital. Palliative care patients are counseled to select quality of life since quantity will elude us. The quality/quantity tradeoff is complicated by hope – might I get a bit more time by sacrificing my quality? A more amusing tradeoff is the irony of my lifelong politics prioritizing local solutions (before it was cool) and now I select the least local medical care possible.

I completed my second trek to Philly this week. In the eleventh hour I cancelled months of detailed planning that had me scheduled to stay east between the two May appointments. I got seriously ill at the end of April, which humbled my pretensions of strength – I bought a new roundtrip ticket with bad seats and high prices, as I needed to come home.

My relationship with the travel gods has always been tenuous. It’s like they pull out their most mechanically flawed planes when I show up. They fix them, which is nice, but not before hours are added to the journey. The Houston leg of my late night trek home included several hours circling the city to burn up enough fuel to allow a safe landing and plane change. I crawled into bed at 5:30 am Philly time – a long day by any standards and my standards are not normal.

A month in and I am learning my Philly landscape – who gives reliable answers, what will happen each visit, how to navigate the city and where I sleep.  It’s a pleasant city that I have walked enough to feel oriented. My volunteer host is well situated and generous. More importantly she has windows that open! A tiny terrace!!! I can walk the two miles to my treatments!!! These details mean a lot.

For much of my treatment I have opted to go solo. Getting medical care is my new job and people go to their jobs unaccompanied. Furthermore, I hope to extend this into a marathon versus a sprint and that means rationing how I complicate other people’s lives. But I am now realizing there is a big difference between going solo a few miles from your home with a rolodex of allies willing to be on call as needed. In Philly, I am a true solo act. There is no back up plan. Yet.

Mike can’t stand not going with me but I remind him of the importance of some stability and normality in our lives. He serves as the safe harbor I throw my mind to as I miss my life. I visualize him living for the both of us. He is the person who tends my every need when I am home but we still have enough balance that he stays my lover not just my caregiver. He attends all decision-making appointments but that’s it. I draw lines. They help me cope. But I missed him horribly this last trek.

Luckily, Philly is a fun city just $8 by bolt bus from NYC and other settings. I hope to explore having an east coast care team that can break up the monotony and challenges of this trial so far from home. (Any takers out there?)

The apheresis is next on May 22nd. It’s the dreaded procedure where 10 liters’ of my blood will be removed then returned minus dendritic cells. It’s hard on any body and mine was fragile before I started three years of treatment. My sister-in-law is driving down from upstate NY to share her competence and cheer. I leave for the hospital at 6 am, with all my gear (100% roll-able because I cant carry anything afterwards.) My plane departs at 8 pm that night returning me home at the alleged hour of 4:30 am Philly time. A long day. But then the hardest part is done (hopefully to be re-done only one more time in September.)

The first week of June I return to Philly to start actual treatment – chemo one day, vaccines the next then observation then HOME for 3 weeks! I will learn how to master this trial, the travel and ways to keep this a journey I chose – one that need not just challenge my quality of life as I barter for more time.

I close by sharing the invaluable words of Susan Gubar a colleague in living with incurable ovarian cancer. She blogs about her journey at the NYTimes capturing so many of the complicated emotions and body issues that I face right now as she talks about her life in a clinical trial. I say, ‘ditto.’

much love, marcy

MAY 9, 2013

Living With Cancer: Good News Soup

By SUSAN GUBAR

People with incurable cancer do sometimes receive good news, as I have. Why is it harder for me to share good news than bad news? During treatment, good news produces elating highs, but also anxious lows.

When I entered a clinical trial for a new cancer drug, the consent form stated that the medication would not provide a cure and could kill me. The pills’ effects on my ovarian cancer were to be measured by the CA-125 blood test, in which numbers above 35 indicate disease growth.

I started the trial last August with a CA-125 over 100. As the number fell in the autumn to 38, in the winter to 9, and in the spring to 5, my morale rose – tempered by occasional dips and drops.

My family and friends are ecstatic. So is my oncologist, who wrote in an e-mail: “You do not even know how exciting it is to see the results of this new drug. I do a lot of clinical studies and I see so many negative results, some of which are fatal. We do all that work to get one rare patient who gets benefit … very rewarding to see it happening to my friend!”

The last two words of this message touched me to the quick. After four years, Dr. Matei had entered my heart and (apparently) I hers. A great joy to make a new friend at my age and in my situation, especially a friend so admired.

Yet I worry that I will fail her. A number that descended in the past nine months can ascend in the next nine months. (Overwhelming odds are it eventually will.) Might sharing good news jinx it — turn it, in the blink of an eye, into bad news?

I know from the nurse administrator of the trial that the experimental drug is not benefiting women with breast cancer. My good news makes me distressed about their bad news. Also, I had overheard conversations in the hospital waiting room about other ovarian cancer patients dropping out because of deleterious side effects, some of which I experience.

Weak from months of dosing, I cannot stand on my feet to cook for more than 10 minutes at a time. At the supermarket, I ogle ready-made meals. Changing the sheets on the bed requires time-outs. Filling the bird feeder, hauling it out, bringing it back in at night (so the squirrels can’t raid it) takes too much fortitude. Bones ache that I did not know I had. My hair has thinned so drastically that Joanne at the salon clipped it close to the scalp, all the while lambasting comb-overs.

Diminishing the cancer seems to involve depleting me. Still, I have kept my resolve steady by focusing on the satisfaction of contributing (if only in a minuscule way) to medical research. I had also kept myself on an even keel by hunkering down for the worst.

Now, with the best possible results, I am a neophyte who does not want to be an ingrate. My trepidation at the lowering cancer marker reminds me of the angst recounted by many patients at the end of a round of successful chemotherapy. The gift of time starts to feel like a present spoiled by uncertainty about the future. With cancer, you can’t win for losing.

Yet today I would rather be a cheerful Tigger than a gloomy Eeyore. So to buoy myself I decide to use the chicken stock defrosting in the fridge, its fat congealed on the top, to make matzo ball soup for my visiting daughter and son-in-law.

After I toss most of the fat, saving a tablespoon, I start whipping up the egg whites. But one of the rotary beaters of the electric mixer refuses to stay in its socket; it keeps falling out, no matter how I swivel it. I am here to testify that the gizmo works with only one beater. That, too, feels revitalizing, even though my low numbers and high spirits may have started to change on the day you read these words.

Tonight there will be homemade soup. Tomorrow I’ll put out the bird feeder and leave it out, despite the squirrels.

http://well.blogs.nytimes.com/2013/05/09/living-with-cancer-good-news-soup/

 

Big News Story – Immune Therapy Offers Hope in Ovarian Cancer

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Preliminary trial results were released on Saturday to great fanfare. Here is an article for those who like details.  xo marcy

Immune Therapy Offers Hope in Ovarian Cancer

By Michael Smith, North American Correspondent, MedPage Today

Published: April 07, 2013
Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco and Dorothy Caputo, MA, BSN, RN, Nurse Planner

Action Points

  • Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.
  • A novel two-step immunotherapy process appears to be effective in nearly three-fourths of women with advanced ovarian cancer when combined with chemotherapy.
  • The process begins with treatment with a personalized vaccine derived from the patient’s own dendritic cells and is followed by a second step, called adoptive T-cell therapy, in which immune cells are reinjected into patients after being removed, stimulated, and expanded in the laboratory.

WASHINGTON — A novel two-step immunotherapy process appears to be effective in nearly three-fourths of women with advanced ovarian cancer, a researcher said here.

The process begins with treatment with a personalized vaccine derived from the patient’s own dendritic cells, according to Lana Kandalaft, PharmD, PhD, of the University of Pennsylvania.

In 65% of 31 patients in a small nonrandomized trial, the vaccine alone led to either stable disease or partial response, Kandalaft told reporters at the annual meeting of the American Association for Cancer Research.

A subset of 11 patients went on to the second step of the process — called adoptive T-cell therapy — and 73% had what Kandalaft called a “clinical benefit” — either stable disease or a shrinking of the tumor.

Most patients with advanced ovarian cancer relapse within 2 years, she noted, and most die within 5 years. “There is definitely a vast unmet need for the development of novel, alternate therapies,” she said.

The process appears to offer new hope for patients with recurrent, progressive ovarian cancer, Kandalaft said, adding that some participants in the trial have had stable disease for several months.

Indeed, she said one woman, who had relapsed twice and had undergone three debulking surgeries before being given the dendritic cell vaccine, has now had 45 months of progression-free survival.

“To this day, she’s still in quite good condition,” she said.

The role of dendritic cells, she noted, is to act as “spies” — collecting information about potential targets and bringing the data back to the T cells, the “soldiers” that kill those targets.

In the study, Kandalaft and colleagues kept participants’ tumor cells alive after debulking surgery and then isolated dendritic cells through apheresis. The cells were exposed to tumor antigens and then injected into patients’ lymph nodes, along with intravenous bevacizumab (Avastin), over about 3 months.

In 20 of 31 patients, Kandalaft reported, the vaccine alone led to clinical benefit — 17 patients had stable disease and three had a partial response. The vaccination was well tolerated and elicited tumor-specific T-cell responses against various ovarian tumor antigens, with some patients experiencing prolonged progression-free survival.

The 11 patients who went on to the second stage of the process had their T cells removed, stimulated and expanded in the lab, and replaced in large numbers. The transfer amplified the antitumor immune response, Kandalaft reported, because the T cells had already been educated by the dendritic cell vaccine to attack tumor cells.

Of the 11 participants in the second stage, seven had stable disease and one had a complete remission, she said.

The study “shows that it’s now possible to devise very efficient and complex but feasible combination strategies (starting with) a vaccination that will basically point the immune system in the direction of the tumor,” commented Louis Weiner, MD, of Georgetown University here, who was not part of the study.

“And then you can further expand that response in a very productive and useful way through an adoptive transfer of activated T cells that have been educated to attack that particular set of antigens,” he told reporters.

Such a combination approach, he said, has the potential to “overcome some of the innate resistance mechanisms that cancers use.”

To Philly and Back!

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I got a taste of my possible new normal last week and it wasn’t bad. In fact, it felt a lot like my old normal, a life I did quite love. Facing mortality I am determined to enjoy whatever each day brings, but that attitude can belie a deeper truth of who I truly am and the life I would like to live. I like being engaged, busy, in the thick of things. I have adapted well to being ‘in the thick’ of life on the infusion ward and the acupuncture clinic but there is a bit of guise in that.The week, starting with last Saturday, March 30th, was BUSY. I knew it would be, so trying to ration my energy, I had even asked my dearest friend not to fly out for my birthday party (sigh) fearing a visit on top of big events would be too much. Even with Stephanie not joining us from Minneapolis, it was quite the gathering. People drove in from many directions to create such a mass that few individual conversations happened but oh what a mass of energy and fun – what you would hope for at a dance party.

The space was lovely, the weather beyond perfect, the host team award worthy and a cake that I never got to sample perhaps in an inadvertent boycott of the cutting into such a thing of beauty. The cake was massive and covered with the ‘best of’ photos of yours truly collaged artistically together.

I stayed on the dance floor and despite my fears that my lung capacity might reduce my ability to boogie, I did not return once to the designated ‘marcy rest throne’. It was wonderful dancing with so many dear friends. At the height of the evening some loud bangs erupted. Oops, the accumulated sound had detonated a few wine glasses. It was time to start winding down.

I had a day of rest before flying off to New York City. Two big east coast events had been foisted together without much ease. The first was a two-day conversation closing out a two-year thinking/action project on engaging the white working class in progressive identity. ROP was among four other groups to feature their work. It was a typical such gathering – 12 hour days, an expectation of your mind always being on.

A special needs person such as I is theoretically accommodated but there is only one size fits all participation. Sit up, stay engaged at the table and maybe, if you are determined, manage 8 hours of sleep. Day one, I functioned. Day two, I functioned. Day three, I functioned and I stopped holding my breath waiting for a glitch as my body rebelled. For five full days I functioned just like any other member of the working world. And I loved it. Luckily, I was able to manage quality food and exercise (there was no day that I walked less than five miles – god bless Manhattan.)

The formal meeting ended. I switched to family housing, slept a full 10 hours and had enormous support in the logistics of the second adventure. I awoke at a leisurely pace on Thursday to walk the 3 miles to Penn Station, train to Philly and exit the train to find the one and only Holly Pruett waiting at the top of the escalators prepared to snap a photo to document this moment – after 18 months we were going to walk to University of Pennsylvania in Philly for a medical appointment. We were finally here.

Holly apologized for her ‘wardrobe malfunction’ but I knew she was the perfectly attired companion for my assignment today to prove to UPenn that I am in ideal health. Holly looked young, fashionable and vital, loaning a definite edge to my efforts. She had clearly spent her proceeding 10 hours in Philly preparing to be a tour guide as we walked the mile from the train station to UPenn. If this was to be my new home, I should start learning about it. (Philly is the 5th largest US city, has five major sports teams and a superstitious relationship with where William Penn’s statue resides in the relative height of downtown Philly. There is more, much more, but we hope to have time to share the delights of Philly.)

In no time we were at the stunningly new, open design of the research wing, signed in and waiting for our appointment to start. Both Holly and I sighed with enormous relief when they acted like “yes, we are expecting you.” All the intake folks were like “really, you are traveling here from Oregon?” YES! WE ARE!!!!!!

The person we have negotiated with for 18 months was there in the flesh and blood. Everything started with hugs. The repeating of information, often having a flash of panic, ‘wait, could sharing this disqualify me?’ Meeting the doctor in charge, Dr Tanyi, who like my new OHSU doctor, is both brilliant and communicating to me through a Slavic accent that I have yet to master. With great energy he reviewed the theory behind the TWO (who knew) clinical trials that I was being screened for. Between needing to remind myself ‘I am truly sitting here’ and the accent, even with my great familiarity with the trial theory I know I missed details.

After the physical exam, he declared me an ‘optimal candidate’, posed for a group photo and left us to meet the project lead and work out the details like the dates for my formal signing of paperwork (May 8th), apheresis/dialysis (May 22nd) and the first vaccines over the three days of June 4th, 5th and 6th with subsequent vaccines every three weeks thereafter until I decide to stop, we run out of my tumor or the cancer grows.

I arrived home after midnight last night. I am thrilled to be home and ever hopeful that by choosing to loan my body to the frontier of medical research forward steps will be made in taming ovarian cancer and extending my own life. Formal signing of paperwork will not happen until May 8th but there is every reason to belief that, courtesy of many, I will be enrolled in the Phase One, cohort four arm of this trial. Let’s keep our fingers crossed for just a little longer.

What a week! Thank you all for the great send off.

love, marcy

 

1st Press Release on *My* UPenn Trial

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Only for those who like details. This gives you a sense of why it has taken me 15 months to get this close to being admitted. Everyone wants in because of their reputation on being on the front lines of extending lives of cancer patients.

warmly, marcy

Two-Step Immunotherapy Attacks Advanced Ovarian Cancer, Penn Medicine Researchers ReportPersonalized Vaccine Made from Patients’ Own Tumors Spurs Immune System

PHILADELPHIA — Most ovarian cancer patients are diagnosed with late stage disease that is unresponsive to existing therapies. In a new study, researchers from the Perelman School of Medicine at the University of Pennsylvania School of Medicine show that a two-step personalized immunotherapy treatment — a dendritic cell vaccine using patients’ own tumor followed by adoptive T cell therapy — triggers anti-tumor immune responses in these type of patients. Four of the six patients treated in the trial responded to the therapy, the investigators report this month in OncoImmunology.

“What we proved in this study is that this is a safe treatment strategy,” says co-first author Lana Kandalaft, PharmD, MTR, PhD, research assistant professor of Obstetrics and Gynecology and director of clinical development in the Ovarian Cancer Research Center. “It is a walk in the park for patients, especially compared to standard chemotherapies and surgical treatments for ovarian cancer – literally, some patients left the clinic and went for a walk in a nearby park after their treatment.”

The findings follow research by the study’s senior author, George Coukos, MD, PhD, director of the Ovarian Cancer Research Center at Penn, who showed in 2003 that women whose ovarian tumors were infiltrated by healthy immune cells, called T cells, tended to live longer than women whose tumors were devoid of T cells. That observation and other subsequent ones suggest the patient’s immune system is trying to fight off the disease but can’t quite muster the strength to beat it. Therefore, investigators have been trying to find ways using patients’ own tumor cells to boost the immune system’s power. 

In the current study, Coukos, Kandalaft, co-first author Daniel J. Powell Jr., PhD, research assistant professor of Pathology and Laboratory Medicine, and colleagues treated six women with advanced ovarian cancer in a two-staged immunotherapy protocol in which they utilized a dendritic cell vaccine created from tissue in the patients’ own tumor, which was stored at time of surgery. All of these women’s cancers had progressed on standard of care chemotherapy.

In the first segment of the study, the team prepared an individualized dendritic cell vaccine for each patient. They harvested dendritic cells from each patient using apheresis, the same process volunteers go through when they donate platelets or other blood products such as those collected for stem cell transplants. Kandalaft and colleagues then exposed each patient’s dendritic cells to tumor extract produced from the woman’s own tumor, which teaches the dendritic cells who the enemy is. After this priming, the investigators vaccinated each patient with her own dendritic cells and gave them a combination chemotherapy regimen of bevacizumab and cyclophosphamide. Because dendritic cells are like the generals of the immune system, they then induce other immune cells to take up the fight.

Of the six patients who received the dendritic cell vaccine, four developed an anti-tumor immune response, indicating that the approach was working. One of those patients had no measurable disease at study entry because all of it had been successfully removed during surgery. She remains in remission today, 42 months following vaccine treatment. The other three who had an immune response to the vaccine still had residual disease and went on to the second segment of treatment.

The team harvested T cells from each of these three women. Using a technique developed at Penn, they grew the cells in the laboratory, expanding their numbers exponentially, and then reintroduced them into each patient after she underwent a lymphodepleting chemotherapy regimen. Because the T cells had already been trained by the dendritic cell vaccine to attack the tumor cells, the adoptive T cell transfer amplifies the anti-tumor immune response.

Two of the women showed a restored immune response after the T cell transfer. One of the women continued to have stable disease, whereas the other had a complete response to the therapy.

The researchers say it is too early to say whether this type of therapy will be effective in a large number of ovarian cancer patients, but the early results are promising. First, and foremost, she notes, the two-step approach appears safe and well tolerated by the patients. Additionally, the team saw a correlation in both treatment steps between immune responses and clinical benefit, suggesting that it is, in fact, the immune response that is holding the disease in check.

With these encouraging results in hand, the team has opened a larger trial in which they have already enrolled about 25 women and aim for up to 30 more. The new protocol uses an improved vaccine platform and an optimized adoptive T cell transfer protocol. The PI of this study is Janos Tanyi, MD, PhD.

“Large clinical trials have shown that intensifying chemotherapy doesn’t improve outcomes for women with advanced ovarian cancer,” Coukos says. “So we need to explore other avenues. We think the combinatorial approach of both immune and chemotherapy is the way to go.”

Other co-authors from Penn include Cheryl L. Chiang, Janos Tanyi, Sarah Kim, Kathy Montone, Rosemarie Mick, Bruce L. Levine, Drew A. Torigian, and Carl H. June. Co-author Marnix Bosch is from Northwest Biotherapeutics in Bethesda, MD.

This study was supported by National Cancer Institute Ovarian SPORE grant P01-CA83638, National Institution of Health R01FD003520-02, and the Ovarian Cancer Immunotherapy Initiative.

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Penn Medicine is one of the world’s leading academic medical centers, dedicated to the related missions of medical education, biomedical research, and excellence in patient care. Penn Medicine consists of the Raymond and Ruth Perelman School of Medicine at the University of Pennsylvania (founded in 1765 as the nation’s first medical school) and the University of Pennsylvania Health System, which together form a $4.3 billion enterprise.

The Perelman School of Medicine is currently ranked #2 in U.S. News & World Report’s survey of research-oriented medical schools. The School is consistently among the nation’s top recipients of funding from the National Institutes of Health, with $479.3 million awarded in the 2011 fiscal year.

The University of Pennsylvania Health System’s patient care facilities include: The Hospital of the University of Pennsylvania — recognized as one of the nation’s top “Honor Roll” hospitals by U.S. News & World Report; Penn Presbyterian Medical Center; and Pennsylvania Hospital — the nation’s first hospital, founded in 1751. Penn Medicine also includes additional patient care facilities and services throughout the Philadelphia region.

Penn Medicine is committed to improving lives and health through a variety of community-based programs and activities. In fiscal year 2011, Penn Medicine provided $854 million to benefit our community.

 

Updates

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Thanks for bearing with me during the very hard months of August and September. I must say that my October, which kicked off with surgery, has been great! Being back in the embrace of treatment allows me to decide that my cancer is being disappeared. My next internal scan could have been as early as now but it is now scheduled for late December/early January and that thrills me. My costume for Halloween will be that of a woman without cancer. (Oddly enough, that looks just like me! Note photo above where both Holly and I are in costume.)
Updates:
Melting Matilda, my remaining tumor being named Matilda, (to the tune of Waltzing Matilda) is my current theme song.
My extracted tumor qualified for UPenn by having more than 100 million cells. It took a full year to get to this place! The next steps start in January with the scan and then a trip to Philly (anyone have frequent flyer miles they are desperate to get rid of?) I would sign paperwork that day *if* my cancer is stable and shrunk and I pass other modest tests. Then two weeks later I would be back for a rather invasive process that harvests dendritic cells from my white cells through a dialysis like machine to allow final production of the Marcy Westerling Vaccine. Two weeks to a month later I am back for the first vaccine treatment! I would have a minimum of 5 trips to Philadelphia so you can see why the donated miles will help. I am also checking out free rides in corporate jets for cancer patients. (I know – too funny.)
My current chemo regime is weekly and low impact but there are also unknowns as I am early in the process and a second drug should get added in next week. Will I lose my hair? Place your bet – half the providers say yes, half say no.
My transition from Kaiser to OHSU should happen this week. Honestly, I still do not know if it will happen. Tuesday or Wednesday I will make the final call to see if the incredibly cumbersome process of getting accepted by a prescription drug plan is complete. (For some reason they could not check the right box that allows an under 65 year old to transition plans in their entry window. Medicare can inform me that they messed up the submitted form but since medicare cant talk to them or vice versa – dont ask me why – being right has little value. So I reapply and again they dont check the right box. Really! Since I have a November 1st intake appointment at my new provider and need chemo election day a resolution happens this week be it Kaiser or OHSU. No call today so I am hoping that they finally found and checked the right little box.
Many of you have been very generous with care packages of late. You got me through a hard time. Now you can save them for the next hard moment of testing. I truly pray that after 15 months of recurrence treatment w.mainly bad news we get a little break in the clouds – disease reduction and clearance for the Hail Mary pass to kick off 2013! (And decent election results….)
And lastly, for those in driving distance to Portland I am doing a reading at a local coffeehouse on Thursday, November 15th from 6:30-7:00.

Marcy Westerling will read from her works on Livingly Dying, a phrase borrowed from the late Christopher Hitchens.

While the content may not seem like date night material, it will be an honest chance to walk with one woman as she faces a terminal cancer diagnosis – including the positives of having a husband and community that walk every step with her.  Cancer is epidemic and dying is a given for all who enter this world.  Why not look behind the curtain for 30 minutes?

They have seating for 50 so please spread the word!

Rain or Shine Coffee House is a bright, cozy space at the foot of Mt. Tabor. 5941 SE Division St -
Portland, OR 97206