Tag Archives: Immunotherapy

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

Almost One Full Year

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This May 27th marks the close of my first year of blogging. I got into it by happenstance. Last May I was adjusting not only to entering the clinical trial at UPenn but also to the ambitious cross-country travel for this experimental treatment. I was hobbled by my first bout of bursitis. Not able to move, I explored the world of blogging until I had my own site. (Thank you, WordPress and Kim W.!)

The blog expanded the world I communicated with beyond the valiant friends and family listening in via my Caringbridge site to whoever might want to find me. I am still learning the value of tagging each post so that folks able to access the Internet, whether in Isle of Man, Belarus or Palestine, can find my Livingly Dying blog.

There have been 33,160 visits to the site and while 27,144 originated from within the United States, 6,019 came from another 101 countries.

I like to think the blog lessened other people’s isolation with disease. This blog certainly reduced my isolation. Thank you for the comments, insights and support. I also hope the blog championed the possibilities of clinical trials and immunology even as it offered an overly realistic glimpse at challenges of trial participation that required significant travel.

A year ago, paperwork was just signed making me officially in the trial. I awaited my Apherisis on May 22nd to gather the dendritic cells to combine with my harvested tumor for the kickoff vaccines the first week of June. The year was filled with the predictable highs and lows of a terminal cancer patient choosing an ambitious Hail Mary pass.

This week I officially enter an observation phase. It has already been two months since my last treatment and the deleterious effects of the drugs are waning. My ca-125 continues to rise and is now at its highest point since frontline treatment. What should trigger concern means less because I am an immunological experiment – and science is beginning to see that patients undergoing immunology don’t always have a steady or fast path towards cancer stability. Rather, my body might be learning, which is good, and part of that learning is mastering the skill of recognizing and then eliminating cancer as happens in a healthy body. For those who love to understand, watch this scientist-to-scientist video explaining the emerging breakthroughs of immunotherapy http://www.scientificamerican.com/article/wolchok-video-who-knew-cancer-has-an-off-switch-video/

I will not be retested for months – a thrilling release to enjoy my first break from treatment since I started this journey with metastatic cancer four years ago.

I intend year two of the Livingly Dying blog to focus on rebuilding and thriving as I work to extend my own break from treatment with expanded efforts in self-healing. If you have your own thoughts for what you would like to see more of on this site, please share.

Warmly, Marcy

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

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.

Cancer-Research-Institute-What-is-Cancer-Immunotherapy-infographic

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

Here Doggy, Doggy…

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Dogs, and the companionship they offer, have been a big part of my life. As a child I calculated for years before talking my parents into a family dog. The humane society was where I found my pups during my adult years. First Sahm, then Boscoe then Tony. I wrote them into job contracts and rental agreements so that the dogs went where I went, they were part of the Marcy package. When diagnosed with terminal cancer, my long time dog pal of 16 years was on his last legs. He was increasingly deaf and blind and the drama of that year was hard for his deteriorating systems. He hung on and on but died the summer after my diagnosis. I was dogless.

My husband, taking seriously the needs of caretaking me, seeks anything that makes our lives simpler. He liked having no dog. The next summer a lovely cat with enormous personality moved into our backyard. We co-existed well. The cat clearly was feeding herself and content so we just enjoyed the daily visits. When the cold weather set in we finally bought cat food, kitty litter and allowed the cat to continue her co-housing. Mike was thrilled to say, “See, you have an animal.” I responded with, “Yes, a cat.” We both loved the cat and the cat did her best to act the part of a dog, following me from room to room, inside or out, and being a companion. But she was not a dog.

a cat, not a dog

a cat, not a dog

As I began the arduous treks to Philadelphia for treatment this past Spring, entering the Hail Mary Pass of an immunology clinical trial, I felt hopeful and a bit entitled. Surely for all this effort I was earning a chance to reclaim parts of my life. Maybe I couldn’t go back to our home in the woods or working fulltime plus or having long hair but wasn’t this effort worthy of some chit? Wasn’t I now eligible to have a dog in my life? My husband only groaned in response to the rhetorical question. So I plotted in my head leaving occasional breadcrumbs about dog rescues for my husband to acclimate to.

In October, I allowed myself to start looking at photos of dogs needing homes and found an incredibly developed subculture of foster homes and transit routes that brought dogs from high kill shelters in California to Oregon for adoption. Foster homes take in these dogs as the frontline placements to detangle their hair, heal their bodies and secure wounded personas, working miracles within the first week but not without a few reduced sleep nights and much cleaning up of toileting errors. I was privileged to meet a few of these moms as I explored adoption. I stay impressed!

Sawyer was on a larger list of cute possibilities that I wanted to check out. He was actually a bit lower on the list as he looked too much like my last dog but I was learning that the all volunteer infrastructure of this dog rescue world meant that there were a lot of unanswered inquiries and false leads. Sawyer’s foster mom got back to me right away and made checking him out so easy. Plus, she provided guidance, wasn’t scared of my health status and agreed to assist in the transition by taking Sawyer back in during my first travels post adoption. It was perfect. And then there was the fact that Sawyer was pretty darn cute. And so I have a dog in my life again, complicating it hourly (no, that’s my shoe; sure, let’s take another walk; sorry, now we sleep) in a way that reassures me I am going to live while I am alive.

Sawyer warming my feet

Sawyer warming my feet

A Big World Made Smaller

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Where are Jersey, Tobago and Ghana?  Courtesy of Wikipedia I find answers. Unknown

A. Jersey is a British Crown dependency just off the coast of Normandy, France.
B. Tobago is located in the southern Caribbean, northeast of the island of Trinidad and southeast of Grenada.
C. Ghana, officially the Republic of Ghana, is a sovereign state and unitary presidential constitutional republic located on the Gulf of Guinea and Atlantic Ocean in the Africa frontier of Sub-Saharan Africa.
There are people impacted by cancer in each of these locations, not surprisingly, alas.
       My accuracy in geography is weak. A shower curtain world map entertained me for years but I still failed to orient myself much better. It is a big world with almost 200 countries, shifting borders and new names. What I know is that everywhere on this globe matters, as does each individual. And that everywhere there is life there is also cancer.
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       I set up the blog LivinglyDying in June 2013 motivated to share my experiences participating in a Phase One clinical trial. The fact that it was an immunological trial at the top rated University of Pennsylvania with early promising results meant it was on the cutting edge of possible cancer breakthroughs. Ovarian Cancer has not seen a shift in its mortality statistics in 30 years – any breakthrough would be a big deal.
       I did not enter this trial to be a good citizen. I entered it as my best bet for staying alive awhile longer. Such self-centered motivations did not mean I couldn’t ‘share the wealth’ by adding a public communication loop. I set up a blog during a week when acute hip bursitis had me able to do little. It was a distraction versus a well thought out new project.
       I make an effort to post weekly, be modestly engaging and use different content angles to meet the varied interests of readers. Friends, family and colleagues were the first to enroll, motivated to track my progress. I wanted content to be good enough that they might share the link with other’s coping with mortality or cancer or just the wonders of life. As the tagline indicates, the blog promises “notes and essays on daily life with terminal cancer.”
       I learned about blog culture and the excellent tools that WordPress provides so that innocents like myself can build a platform that is read. Little by little, I was found. (I am still waiting for The Post That Goes Viral to bring me instant fame as was so well made fun of on Showtime’s series The Big C. The truth is many, many people blog and many, many people buy lottery tickets – the odds of making it big are not in your favor.)
        I stay mesmerized by my stats page which allows me to study not just the number of visitors and the different places on the site where they spend time but also which countries they call home and what entry points allow them to find LivinglyDying. I am often amused to find search terms like ‘Marcy Westerling’s Obituary’ as the connection to the blog. (Yesterday someone entered ovarian cancer party supplies and found the blog!) More common are search term entries like today’s query, ‘I am dying of cancer’.
       Most of my visitors stumble upon the blog in desperation – they have received their own terminal diagnosis and they want to feel less isolated as they learn how to cope. People from 58 countries including Jersey, Tobago and Ghana have spent time on LivinglyDying. There have been over 13,000 visitors and while that still ranks me as a small potato blog, I hope that in the five months of my blogging visitors may have found some support and useful information.
       Thank you for being readers, for spreading the word. If you are healthy, thank you for being brave enough to co-mingle with those that are not. For those consigned to this sorry path of terminal illness, thank you for reaching out and for suspecting, as I do, that there might be some magical power in being connected and in being emboldened by the notion that in 2013 we can be both terminal and quite lively and that maybe, just maybe we will see our illnesses become chronic versus terminal in our lifetimes, especially if we can make the world a little smaller, share our resources and make every person and every community counts.images-1

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.

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 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.

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.”

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.