Saturday, July 9, 2011

Strategy

May the 12th. That was the last little white pill of poison chemo intake. Nothing since then; two months. I had a scan 10 days ago that says I have new growth and so it is time to make a move of some sort. Strategy.

Since 5/12 all of the side effects have gone away or at least decreased. I am still short on stamina, but much better. I still need to take high blood pressure meds. My hair is growing where it was just breaking off. I just now pulled an inch long sprout out of my right ear. Some arm hair and even eye lashes are going wild; making up for lost time I suppose. Acne-like skin rash has cleared so I no longer compare notes with embarrassed adolescents. My equilibrium is back enough to ride my bike, and I can feel safe driving most anytime. My appetite is back with a vengeance - 12 pounds to the belly in 8 weeks.

After 2 yrs of $850 COBRA premiums I now qualify for Medicare and I signed on with the CIGNA version. Looks like the out of pocket medical will add up to less, but paying my portion of the drugs could get crazy.

I checked out two drug trials in California, but the energy/expense of that weekly travel is just not feasible. There is a possible trial here but not yet up to speed. There may be a c-met drug trial coming to NIH where I was before, and they would take me back. C-met inhibitor is a drug category that hold the most promise for now. However, c-met drugs are not yet available. One of them has been throiugh trials and has shown strong results for PRCC. BUT WE ARE NOT ALLOWED TO HAVE ACCESS TO THAT DRUG CALLED XL880 FROM THE PHARMACEUTICAL COMPANY CALLED GSK. It is not yet approved by the FDA, and GSK will not make any money on it, so it may never be available, even if it is the last house on the block.

The drug I am looking at taking now for the short term, is an mTOR inhibitor called Torisel. It has a list of side effects. The word 'constipation' follows the word 'diarrhea' on the list, which seems humorous to me but there is nothing funny about some of the other words. However the odds are good that drug will keep my cancer growing slow enough to buy me another year or two, hopefully something better will come along by then. Problem is that I will feel pretty crappy for that year or two.

Jacki and I had a tearful heart to heart about strategy. It has been wonderful these past two months of feeling good and maybe it's best to stay off the drugs and squeeze out the highest quality of living possible as long as possible. Still, that leads to faster growth and increasing bone pain and then coughing up blood as my cancer takes me down. What if the discomfort of an interim drug does help me hold on until a medical solution evolves? If it does then great! If it does not then . . . I have a leak in both eyes, so I'm gonna stop for now.
Bill

3 comments:

  1. .......so very very difficult indeed. Wish you and your wife well.

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  2. Each day is a blessing, and with the hope of a brighter tomorrow. My Love to you and Jackie. Remember Recovery is a process not a destination.

    Preston

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