Eric and I are doing OK. His primary oncologist doubled the dosage of Gleevec for him, which is the only chemo that he was still on, and increased dosage is making him quite sick to his tummy. Having this to deal with, on top of the bad news, has been tough for him. But the docs are working with us to at least manage the side effects, so he should be feeling better soon.
We had what was supposed to be our 6-month, happy-go-lucky, clean-bill-of-health appointment at Johns Hopkins yesterday. The docs there are nothing short of magical and told us that the failed transplant was in fact NOT the end of the road as we had feared, but that there were two more treatment options for Eric--the first being enrollment in a clinical trial. There is a new class of drugs called "Super Gleevecs" (none of which have FDA approval--YET)--but they're in the final stage of trials, which means that they are done testing the meds on lab rats and monkeys and are now testing them on people. The plan is to enroll Eric in one of those studies and see if the new meds can help him. The final step would be to transplant a different type of cell from his brother (the original donor)--but that would be an absolute last resort because the potential for life-threatening side effects is high. So we are keeping our fingers crossed that he'll be admitted to a clinical trial.
This just sucks. We were so eager to put this all behind us and move on wit our lives. We had begun to lay plans for the future...Eric had applied to a couple of jobs with various environmental agencies, we were looking at leaving this area for one with a lower cost of living so that we might be able to buy a little house, and I was eagerly counting the days 'til I could say goodbye to the military for good.
Now, we're right back at square one...again.
Keep your fingers (and toes) crossed for us. And if you have the time, bug your congresspersons and senators like hell to fight Bush's proposed cuts to cancer research funding and programs for the next fiscal year.
You can e-mail your state's representatives at LiveStrong, go to the main page and click on "Tell Congress NO to cuts in cancer research."
posted by amanda @ 11:26 AM