Tag Archives: doxil

Living a Life With and Beyond Cancer

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Who are we? When we get the cancer diagnosis, cancer and the urge to survive dominate our lives. Depending on the stage of diagnosis, it happens at different levels. Stage 1 and 2 folks seem to learn to tip toe through their normal lives with cancer carried along as a silent companion slipped into pockets of existing pants, jackets and bags. Stage 3 and 4 folks, well, our cancer seems to barely fit in an oversized tote bag making our old scramble through life clearly marred with this weight. We put it down but there it sits, waiting for us to pick it back up because, sigh, it is our burden to carry. It is heavy. It is awkward. It often makes it into a room before we do – like a nine-month pregnant woman’s belly except we arrive to silence and discomfort.

The other day on facebook I found a post that delighted me. A woman I know only virtually and through cancer advocacy (we both have advanced, recurrent ovarian cancer and worked hard to expose the drug shortages and get doxil back in use) had found me mentioned in an article in Yes! Magazine. It was the former Marcy, the community organizer Marcy, the Marcy who loved her life.

And I loved having my worlds meet. Yes, I have terminal cancer. And yes, I have a life. I am still trying to make the world a better place even if the hours I can dedicate to it are lessened by treatments and being in my closing phase of life.

And if you want to meet the Marcy who is a community organizer (and has terminal cancer) please read this article A Caring Economy Requires Building Bridges—Not Burning Them – Traditional organizing makes opponents into “enemies,” but a new crop of activists is using love and empathy to create new alliances and possibilities.

http://www.yesmagazine.org/issues/love-and-the-apocalypse/labor2019s-new-love-building-a-caring-economy-involves-radical-acts-of-empathy-from-both-sides

I can accept and love my current life the most when it accommodates all of me.#66 Cover

Another Failed Chemo – Goodbye Doxil

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Just a quick update….the burning is done.  After completing 4 of the 6-8 intended rounds of doxil I will get no more.  My burns were too severe (3rd degree) and the drug not effective enough.  Alas.

I am to start taxol on a weekly schedule and continue with avistan.  Taxol (in combination with carbo-platnum that I am now allergic to) is a common starter treatment for many cancers.  It’s what causes the bald head although I might bypass balding and instead face more hair thinning with the lower dose infusions.
In the meantime, I am urged to seek out a clinical trail by my oncologist.  I might prefer he do that but kaiser has strengths and weaknesses.  Sometime this Fall, presumably October but I am trying to get someone to confirm that, I start medicare (2 years 5 months after being diagnosed with a ‘catastrophic illness’.)  I had hoped to stay with Kaiser.  One downside of Kaiser is that it is not insurance – it is health care (what a concept) but they only pay for their health care.  They have been most generous with me but that does not include off site clinical trails.  And the way most clinical trials work is they provide the magic drug (or placebo) but your insurance covers the simultaneous delivery of whatever is the standard of care drug(s).  Picking up the cost of your own standard of care treatments is not doable.
So, that means that as I opt in to medicare I either need to ditch kaiser so that i can better access clinical trials or, modest good news from today, I could opt to stay with kaiser once on medicare and medicare would pay 75 – 80% vs 100% towards clinical trials.  So, maybe that is doable….?  (Oh for a single payer system that would allow me to focus on being sick – although barring that, kudos do go to both Kaiser and Medicare.)
In the meantime, a few of us are traveling to Seattle in early September for the every other year international conference on ovarian cancer – maybe a door will open there. It’s all researchers presenting to their peers but they allow patients to attend for free.  Very cool.
I arrive to the Seattle conference as a chemo failure.  The list of chemos that dont work for me is mounting. My cancer grows.  Now would be a good time for a door to open.  I am concerned to leave doxil, a drug I had pinned my hopes on, but I am pleased to stop being burned alive.  And how I will cope with weekly taxol we will know soon enough.
Thanks for all your interest, compassion and support.  xo marcy

Hobbling Forwards

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I spent an hour yesterday cursing my way through our households vast ruler supply seeking a devise that measured in centimeters.  I was determined to respond to my newly arrived test results with my head not my heart (or whatever part of me ceases to function when it encounters dreaded words like new and growth and lung.)  With a ruler found that used centimeters I could make measurable those words.  And so my test results that initially took my breath away were neutralized a bit.

I did not get a wonderful result on my ct scan of this week.  But it was at worst soft bad and, perhaps, almost neutral.  I dont see my doctor until Friday so I still speculate.  Of my 5 cancerous nodules in the abdomen and pelvis 3 showed modest shrinkage, two showed modest growth.  Two new shadows have now made it in to my left lung for the first time but only time will tell if they are indeed cancer and if they chose to grow.  My right lung stays stable.
My big goal these days is disease stability.  My current pattern of some shrinkage and some growth, might average out to minor changes in disease volume but they are not disease stability.  If I was not midway through a new treatment regime these results would be more dire.  But since these drugs are slower to work, we can look at the possibility of positive results around the corner.  Why the hell not.
Its not been an easy few weeks.  The main drug I am on, doxil, aka the red devil, requires enormous preemptive work to minimize the devilish impacts of burning, burning, burning.  A chemo buddy (thank you, Holly) helps me ice during treatment (not easy!) and then I stay on ice as much as I can for the next few weeks.  This drug is a cumulative one so once the burning starts it only gets worse with each cycle.  There is no real solution for it – ice, salve, ice, salve.  Avoidance is your best plan. I now better understand the starting suggestion of no repetitive motions which made little sense when shared as advise – why did that mean no washing of dishes or housework.  But now I get it.  (Of course, they are too shy to say no intercourse.)
My poor butt brings me to tears as I try to find clothing that I can wear and a chair that can accommodate.  And then there are the poor hands and feet.  The left hand curling to a painful claw for the majority of each treatment cycle.  The feet look better but hurt, hurt, hurt especially when rested in the only shoes I can still wear.  I hobble and curse.  And by bedtime, cry.
Initially, I so wanted the test results to be good enough to keep me on doxil because that would mean that there was some positive news after a long year of disappointments.  But the night before I got the test results I finally decided I could endure no more of this being burned alive.  The test results arrived as the peak of the burning passed.  I live in the now and right now the residual sores on my butt, hands, and feet are manageable.  I presume that my cheerleaders and I will manage another few cycles of this hell if the doctor recommends it.
For those who visit, you may witness more pain.  And you may be asked to sweep a room, or straighten the bed.  (There is just so much that I can not do while on this drug.  And Mike is needing to do so, so much.)  If everyone completes some minor task, the house may stay neat and that is the kind of detail that makes the world of difference right now.
In the last week, as I tried to relocate from one spot to another with enormous pain, I told Mike, “dont ever let anyone say ‘that at least she is out of her misery now’ because I can accept this pain.”  Of course, a few days later, I wondered. But pain passes.  And then I stare in awe at a flower dropped off by a friend and appreciate being here.  This is hard but so is life which I so choose. And so that is my small update.
Luckily, by Saturday’s dance part I should be at my peak of recovery – hope to see you there.  xoxo marcy

1st Recurrence & 3rd Chemo Drug Tried

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This morning the wedding ring came off.  It wasn’t an easy process but it was time.  The finger is swollen and everything chafes these days.  I have dubbed this chemo the chemo of 100 indignities.  I started by calling it 1000 but really, 1000 I eventually wondered.  Why exaggerate?  It’s the first time I have felt my body a form of entertainment as I never know what indignity will show up with the start of a new day.  I am a science experiment, at least to me.  The indignities are small but add up.  Most wrong of all they have thrown me back into migraines that had all but disappeared once the surgeons claimed my ovaries two years ago.  After living with migraines since age 12 it seemed the gods had their own sense of decency – we will give you metastasized ovarian cancer but relieve you of the chronic burden of migraines.  You will not be given more then you can bear kind of thinking – well, that honeymoon seems terminated.

So, I continue with my 8th month of non-stop chemo (and 2 years with 22 infusions thus far – a lot by any standard) with my newest drug doxil aka the red devil. It drips in you an actual orange-red adding some rare color to the infusion room.  I wont know until August whether I am approaching disease stabilization, the goal.  I am not looking forward to that test.  This next infusion I add in an additional drug every two weeks, Avistan.  I have swung wildly back and fourth on starting this drug these last 8 months, agreeing to it just to cancel a day or two prior to its start.  This time I wont cancel.  I am resolved. Technically I am lucky to have it offered to me since it is not officially cleared for ovarian cancer yet by the FDA (and they just revoked approval of it for breast cancer – a non confidence booster…but that is cancer care in 2012 – one crap shoot after the next.)  Starting Avistan probably means that I will never go off chemo, which just clarifies my status in another uncomfortable way.  And it is notorious for it’s own, more dramatic, set of side effects.

All the above is very real to Mike and me.  And yet we plod forward with relative ease and happiness.  We have another community garden plot, this one an actual block from our house. The front and side yards are filled with growing space and another garden will be added this summer. Growing is a belief in the future. Growing is accepting life cycles.  Our newly added jasmine releases its fragrance today.  I have finally gotten back to quilting after a two-year creativity stall.  Often our biggest worries are the same mundane ones we all face – can we train the cat not to wake us in the night, where do all the dirty dishes come from, why is it raining again?  

Perhaps, though, we live with gratitude more ever present.  For 14 of the last 24 months we have relied on meals dropped off once/week and other gestures to keep us going.  I am sure the stalwart ranks could use some new helpers.  If you are game to sign up and give someone else a break contact Holly Pruett who runs the lotsofhelping hands site – email her at hollyjpruett@gmail.com.  Please know that every one of your kindnesses is deeply appreciated.

love, as always, 

marcy

p.s.  Cynthia Nixon, the actor who is famous for her role in Sex and the City and who just finished playing the lead in Wit on Broadway, compared her own breast cancer to her character’s ovarian cancer like this:  “It had the same name,” she said. “But a cat can be a kitten or a mountain lion. They’re both cats. That is, ovarian is much more ferocious.”  The woman who shared this quote found the comparison very useful because she feels that most people who don’t have experience with cancer assume they’re all pretty much the same.  I am not sure they really are that different – what matters is stage at diagnosis.  But since ovarian is almost always diagnosed late we are ferociously occupied.  And, of course, pathetically under researched compared to other cancers. Don’t forget early detection depends on you – listen to your body and the small discomforts that PERSIST for more than 11 days in any calendar month. 

Not What I Wanted…New Scan Results

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Well, it’s my 3rd ct scan in a row with lousy news.  I have new cancer growth after 5 months of chemo.  19 chemo doses and the cancer is growing.  It’s enough to give a girl doubts.

So, I will get another port installed asap with great hopes that the surgery works this time because the veins are done.
And then I will start on the imported doxil that I should have gone on 6 months ago were it available.
My bone marrow is very tired but my body continues to function fairly well.  I biked the hour each way to get my dour news.
And my great ‘research’ team abandoned their personal plans for last night to huddle instead over strategies to get my prior clinical trial unblinded and leave me eligible for a new clinical trial out of Pennsylvania.
And that’s enough to give a girl the sliver of hope she needs to keep on keepin’ on.
Enjoy the now because it is real.
xo  marcy
p.s.  The photo attempts to show a work I made at a death and dying workshop last summer.  You may or may not be able to tell that the turtle is literally 1/8th off the work and leaving the lovely nature scene.  I was trying to create the sense of moving forwards, regardless, to inspire me when it all seems a bit much. (Of course, the turtle and I both know that she is headed to an even better beach.)

Adapting to a (Too) Short 1st Remission

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 Last week was tough.  Too many consults with doctors that crushed our few hopes.  I am inoperable in the abdomen.  I am inoperable in the chest.  I am too high risk for radiation.  Chemo is the only option.  First choice chemo, doxil/caelyx, is available in every other country but ours as big pharma has created a supply line collapse because of unregulated greed.  (I just heard that there are no drugs available to treat TB in this country – that should scare everyone into action.  Government needs to step in.)

It is wrong but it is also my only reality.  I need drugs now.  Cancer doesn’t wait.
My docs did not initially agree on a chemo approach with one wanting to proceed gently (to preserve my marrow for as long as possible) but the other wanting to be as aggressive as possible even if the optimum drugs are not available.  We will go (not that I have felt very consulted) with the most aggressive approach because they believe I am young and fit enough to handle it.  My first infusion will be Monday, November 7th with or without the surgical port installed to make treatment more bearable.  I stay on the waitlist for the top choice chemo but no one expects availability of that this year.
Mike and I leave for a 2 week visit to family in Holland that starts later this week.  It’s all about making the most of the now.  And in that spirit I must stop typing, get on my bike for the 10 mile trek to my fitness class for cancer warriors, then to my clinic for acupuncture and then for my first session of spiritual counseling.
much love,marcy

Remember Act Up?

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Greetings all.  I hope you are enjoying the appearance of red in the leaves and the chill in the air. This has been a tougher time for Mike and me as we wait for the look-see October 5th to confirm a likely re-occurence far too soon to bode well.  So now I get to both research best options and fight for those drugs to be available.  In the meantime, Mike’s brother and a great support to him is facing his own rapid decline as he was formally diagnosed with ALS the same day that my ca 125 jumped in August. What a happy little Oregon team we are. (Actually, we are fine.  Just raw as well.)

I share this post from a fellow warrior that I have met on this journey. I am the organizing match for her great writing and research skills.  Do not go gentle into that good night, indeed.
I can accept an early death.  I will not accept assistance with that by big pharma and congress.  Act Up demanded a better medical process for AIDS and they got it*.  But not before they fought and died creatively and constantly to get equitable treatment. I can’t fight for a miracle (although I do hope quite a bit) but I can and will fight till the end for the effective drugs tostay available.    And if I am going to die, I will die in front of their corporate headquarters or congress.  This is wrong in a sea of too many wrongs.
xo marcy
*Treatment of AIDS now stands impacted as well by these massive international drug shortages.

A blog about my interaction with ovarian cancer.

SUNDAY, SEPTEMBER 25, 2011

More about Drug Shortages- Get Out Those Scarves and Teal Arm Bands

What if the government and private donations pumped money into the development of drugs to treat a deadly cancer but suddenly when distribution of the drugs became unprofitable the companies making them stopped production.  What happens to the war on cancer then?  Should we just accept that in a capitalist economy, profits determine who lives and who dies?

I have written in other posts that it appears to me that the current chemo shortages are disproportionately affecting ovarian cancer, which is primarily an older woman’s disease. I was please to find this American Cancer Society article that confirms my position. Unfortunately the article skews the discussion a bit about what has caused the shortages by also quoting  a large pharmaceutal distributor (McKesson) saying essentially it’s all the FDA’s fault.  The spokesperson claims that FDA’s increased scrutiny on manufacturing processes and quality control have made certain drugs too low in profits to sustain production of those drugs.  The article further states,”McKesson’s Chief Medical Officer Dr. Roy Beveridge, MD, says there is no economic incentive for manufacturers to make or distribute low-priced generic drugs, and that unless the baseline system changes, shortages are going to continue.”

J&J Headquarters designed by IM Pei

Ben Venue Labs, the manufacturer of Doxil, a critical treatment for recurrent ovarian cancer, for a subsidiary of Johnson & Johnson, claims that the problem is not one profit. An 9/22/11 article in courier-journal.com by Laura Ungar states:
Jason Kurtz, spokesman for the Ohio-based third-party maker, Ben Venue Laboratories, would only say “we’re facing capacity constraints” with a drug that is complex to make. He wouldn’t specify what type of constraints, but said examples of such problems include unplanned downtime because of machinery breakdowns and capital-improvement projects that limit manufacturing capacity.

However, Ben Venue Labs wants out of the Doxil business (and other contract manufacturing) to focus more on its business as Bedford Labs, a producer of generic injectables, and avoid all the problems that have caused bans from Canada and Europe of Ben Venue products.  Like the WSJ said, it is all about manufacturing priorities. In the meantime, as Bedford Labs, the company has discontinued cisplatin and carboplatinand has significant shortages in production of Taxol. It appears to focus on commonly needed and presumably more profitable drugs such as those that treat migraine (generic Imitrix), indigestion (generic Zantac) and high blood pressure (generic Inderol).

With Ben Venue moving on to greener pastures, who will J&J find to manufacture Doxil and how hard will they try? Doxil reportedly represents less than 1% of Johnson & Johnson revenues.  A few of my ovarian cancer sisters on inspire.com bulletin board noted that J&J makes a lot of money marketing to women, and in particular in women’s products.   Here’s one list of products that J& J sells.  Perhaps J&J needs to be reminded that they need to focus on Doxil as well, and quickly.

In addition,  there are all the generic drug companies that have discontinued or have serious shortage in chemo drugs  ovarian cancer patients need. For Taxol, they areAPP, Bedford, Hospira, Sandoz and Teva.  For carboplatin, they are APP, Bedford, Sandoz and Teva.  For cisplatin, they are APP, Bedford and Teva.  And with Bedford, now out of the ovarian chemo business for the most part, more of the market power will consolidate in the handful of generic companies left, who will continue to make “allocation decisions” of their manufacturing capacity based on profit.

What can we do? Big Pharma would have us believe that the causes are all very complicated–increased reliance on outsourced ingredients, Medicare price controls, increased demand from all those pesky cancer patients, complicated manufacturing processes and lack of inspection capacity from the FDA.  But we all know that it boils down to making sure that Big Pharma makes maximum profit, even when lives are at stake.  This is unacceptable in a civilized society.

In my previous posts, I have encouraged people to write to Congress.  A hearing was held on Friday September 23, 2011 in the House Energy and Commerce subcommittee on Health but the human voice of the affected cancer patient was sorely missing. We can continue to try to get our government to take some action in this area which they have been loath to regulate thus far.  Or we can take our message to the streets and protest at the offices of the companies who will not manufacture the drugs we need.  We could show up at J&J corporate offices (and the generic companies too) wearing scarves and teal arm bands, with our message that we are still here, we are still fighting and they have an obligation to get us the drugs that will keep us alive.  Who’s up for a road trip to New Brunswick, New Jersey?  by Maggie Heim

Marcy will be there.

Holding My Breathe

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A cancer friend wrote the below too well for me to do more than share…I wont have news about my own rise in numbers and likely reoccurrence until retested in mid September but I was struck cold by this recent quote in the Oregonian.  

“Dr. Samuel Taylor, an oncologist with Celilo Cancer Center in The Dalles, OR says his group has rationed leucovorin. Colon cancer patients considered curable receive full doses. Patients considered terminal, but who could have years to live with full treatment, instead receive a partial dose, he says.”  ouch.  
 
At least I now have my “Cancer Warrior” tattoo on my wrist, see photo, to remind me to move forwards and enjoy each day. 
 
Do your part and spread the word – you’ll be fighting corporate greed and globalization while promoting the need for effective government.  And helping me and so many others avoid corporate death panels.  thanks.  
 
xo marcy
Critics of health care reform warned the government would set up “death panels” if the law was enacted.  That hasn’t happened, but such panels do exist, thanks to the actions of Big Pharma. Today pharmaceutical companies are choosing who will live and die when they decide not to manufacture drugs needed by cancer patients – like me – who are at risk of premature death.

There is a nationwide shortage of Doxil, a chemotherapy drug used to treat recurrent ovarian cancer, among other cancers. I learned about the shortage from my oncologist in July when he said that the best treatment for me was Doxil in combination with carboplatinum for my now recurrent ovarian cancer, but I would have to start without Doxil.  New supplies were not expected until mid or late August.

The drug is distributed by Janssen Products, LP, a Johnson & Johnson company, and manufactured by Ben Venue Laboratories in Bedford, Ohio, a unit of Boehringer Ingelheim GmbH of Germany. Ben Venue’s representative explained that the company is facing “manufacturing capacity constraints” that have held up some products, and it is working diligently to prioritize and expedite manufacturing for current orders.” (WSJ 7/21/11)  I wonder if  the priorities are set because of the lower financial return Doxil brings or the fact that it is a woman’s disease that Doxil mostly treats.

I learned from an online board that women around the country were scrambling to places remote from their regular treatment centers to get the precious Doxil before it runs out.  One woman said a small supply was available in Texas; another thought some could be had in Boston. It turns out that by early August, none was available in the United States.  One person has gone to Paris to finish her Doxil treatment.

Shockingly, Doxil is only one of many drugs in shortage in the United States.  Three other mainline chemotherapies for ovarian cancer, carboplatinum, cis-platin and taxol, as well as chemotherapy drugs for breast and colorectal cancer, are in short supply.  I learned from a new friend online that her clinic in Los Angeles has run out of taxol. Luckily, I get my infusions at Cedars Sinai Medical Center, which still
has a supply of these three drugs even though it does not have Doxil.

On August 18, 2011, Janssen issued its latest update on the Doxil shortage.  It announced that it had implemented its “new allocation process for a modest and limited supply of DOXIL®” and apparently all available Doxil has been distributed to certain patients whose physicians certified in writing that the patients were already on Doxil. There is now a waiting list that will be fulfilled as new supply eventually becomes available.  However, Janssen cautioned,   “As supply will remain intermittent in the coming months, Janssen Products, LP continues to recommend that no new patients be started on DOXIL®.”

So, the original announcement that Doxil would be available again by late August proved to be inaccurate.  Doxil is available again only for special limited cases, which unfortunately do not include me because I have not yet started treatment with Doxil.

According to the American Society of Health System Pharmacists, drug shortages currently affect about 200 medications in the United States, including antibiotics. The FDA reports record shortages for 2010 and projects more record shortages for 2011.  But the FDA has no power to require drug manufacturers to explain why there are shortages and effectively must beg the manufacturers to keep it informed.

The only real reason for these shortages is the economics for Big Pharma., which makes more money from new drugs, antidepressants and potency pills than generic chemotherapy drugs.  Why make drugs for which you can only charge $3.00 per dose when you can force doctors because of shortages to prescribe new medications that cost $10,000 per dose.?

This all means I could go for an indeterminate time not getting the drug that my oncologist says best increases my odds for remission.  I am starting to feel the need to scramble myself.  For this grandmother,
the “allocation system” of who gets Doxil (and possibly the other drugs with shortages used to treat ovarian cancer) has made the drug companies the real death panels.

Senator Klobucher introduced S. 296, Preserving Access to Life-Saving Medications Act, which would require manufacturers to report shortages and reasons for the shortages to the FDA. A similar bill, HR 2245, has been introduced in the House. Both bills are still in committee.

While I support this legislation, it is unfortunately merely a band-aid over a gaping wound.  Drug companies need to become more accountable for their profit driven decisions about what drugs to produce.  My fellow cancer warriors and I cannot fight the good fight if the drugs aren’t even available.  Maggie Heim – Help Keep a Sister Alive http://helpkeepasisteralive.blogspot.com/tattoo