Tag Archives: AIDS

The Philly Chronicles – Trek Four, Part A

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

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

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

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

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

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

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

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

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

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

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

Part B to follow shortly…

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.