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
livingly dying 