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.
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 email@example.com. Please know that every one of your kindnesses is deeply appreciated.
love, as always,
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.
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.
I started a tradition 16 years ago now. Sometimes I explained it by saying, ‘well, I never got my Christmas Cards out so Valentine’s Day became my time’, which is true but not entirely.
Christopher Hitchens died a few days back from his cancer and while I was mainly neutral on his work, I did develop an affinity for him as we both underwent our dramatic diagnosises with advanced cancer in the Spring of 2010. He chronicled the strange journey so well that I could relax in my own attempts to describe it. His initial Vanity Fair column on his cancer became one I referred many a friend to, then and now, for being so spot on.
He describes the original process of calling in emergency help, “…but now that I view the scene in retrospect I see it as a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady.”
“The new land is quite welcoming in its way. …the humor is a touch feeble and repetitive, there seems to be almost no talk of sex, and the cuisine is the worst of any destination I have ever visited. The country has a language of its own—a lingua franca that manages to be both dull and difficult and that contains names like ondansetron, for anti-nausea medication…
He wryly notes, “In whatever kind of a “race” life may be, I have very abruptly become a finalist. To the dumb question “Why me?” the cosmos barely bothers to return the reply: Why not?”
And then with these closing paragraphs he captures the odd bargains, suffering and causes an advanced cancer patient faces when they know how the story ends and yet vie bizarrely for more time. “The oncology bargain is that, in return for at least the chance of a few more useful years, you agree to submit to chemotherapy and then, if you are lucky with that, to radiation or even surgery. So here’s the wager: you stick around for a bit, but in return we are going to need some things from you. These things may include your taste buds, your ability to concentrate, your ability to digest, and the hair on your head. This certainly appears to be a reasonable trade. Unfortunately, it also involves confronting one of the most appealing clichés in our language. You’ve heard it all right. People don’t have cancer: they are reported to be battling cancer. No well-wisher omits the combative image: You can beat this. It’s even in obituaries for cancer losers, as if one might reasonably say of someone that they died after a long and brave struggle with mortality. You don’t hear it about long-term sufferers from heart disease or kidney failure.
Myself, I love the imagery of struggle. I sometimes wish I were suffering in a good cause, or risking my life for the good of others, instead of just being a gravely endangered patient. Allow me to inform you, though, that when you sit in a room with a set of other finalists, and kindly people bring a huge transparent bag of poison and plug it into your arm, and you either read or don’t read a book while the venom sack gradually empties itself into your system, the image of the ardent soldier or revolutionary is the very last one that will occur to you. You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water.”
So Christopher Hitchens publicly ‘lost the battle’ on December 15th 2011, a battle more accurately lost on the day of his diagnosis.
It’s been a long silence from me on the caring bridge site. And not one of those good silences but one where I have tried to decide what is my mood as I face ‘livingly dyingly’ (again in Hitchens’ words) with suspended despair. I don’t want to waste my time with sadness but dang, recurring so fast and with the first choice drugs not available, it is hard not to feel a steady drum beat off in the shadows.
But I do apologize for being so lame at getting out an update. Many days I try but before I can decide what to say I have lost my limited energy. I could say ‘I am fine’ because basically I am fine for a stage iv ovarian cancer patient in her first recurrence. I could confess how hard this reentry into chemo land has been; bore you with my medical woes that have seemed endless this round. But I don’t want to dwell in my pain for a moment longer than I have to. Soon I have a good day or hour and I am caught up in appreciating those moments. “How am I?” is a volatile question that I rarely know the answer to.
I have loved these short, dark days of late Fall. As the solstice approaches to mark the return of light I have mixed feelings. A marker I have so long relished I now wonder if I am up to. But I suspect I will be. This week, a week of relative good health because my chemo was delayed yet again due to low blood counts, I actually started pulling out some projects, making lists, test driving my brain and finding some traction. With the help of so many of you, I remember to put one foot in front of the other and find that I can get somewhere and that’s not bad.
Mike and I did manage to visit my relatives in Holland prior to starting chemo – a lovely sendoff. Our other jaunt was to a cancer retreat that reminded me yet again that the patient and primary caregiver face equally huge burdens, so, as always, a huge shout out to my beloved Mike.
lots of love and happy holidays, marcy
I suspected I was reoccurring when my numbers did a jump from 13 to 20 in August but expected it would stay microscopic for awhile longer. But with my ca 125 at a mere 30 right now, I have visible cancer in lung and abdomen. In fact, we now know that it was there in July but interpreting scans is a tough art. So I now have recurrent metastasized epithelial ovarian cancer probably platinum resistant. Still stage iv and still grade 3 – the worst in all categories now. An odd accomplishment.
I am very fit and eat well. My 2nd opinion doc had me add in weights so I feel ready for the onslaught. But I am sad. (Especially about loosing my hair again. And dont even dare utter some lame positive spin cos there is nothing positive about being made bald by drugs to me. Especially when it does not even cure you.)
We are looking at radiation and surgery but chemo stays top starting priority. (Interesting note, my friends did an international search for doxil and found it everywhere but this country, even Canada despite their stories of being impacted. So I am more confused then ever by our supply lines crisis.) I am on a wait list for the drugs to be available. If we can’t get them I relocate countries or take next best option – I would probably do the latter. We meet with surgeon on Monday to assess what we can cut out.
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 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
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.
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/