I am livid.
I was downgraded from stage IIIC to stage IV 2 weeks ago. I previously tested positive for the BRAF mutation and the doctor wanted to enroll me in the trial.
I filled out the paperwork with tears flowing from my eyes from the news. I was knowledgeable enough on the the trial protocol from my own research and reading other postings here to know that one of the qualifications was the failure of a previous treatment, or as the protocol states "failure of at least one prior standard of care regimen ". The only treatment I had so far was 2 surgeries and radiation treatment, all of which were known to the "Melanoma" specialist. i asked him if the Radiation qualified me and he said yes. When I called today to check up on the paperwork to make sure things were flowing through the proper channels, I asked one of the assistants to confirm what treatments would qualify me for the study.
She got back to me and confirmed that radiation treatment did NOT qualify me for the treatment. She also informed me that they had another person in the same situation as myself and that person was starting the DTIC/Dacarbazine injection today and just so he was on a biochem/immuno treatment. After that fails, he can apply for the BRAF treatment after waiting the 30 day prior treatment window. They must have known about this qualification a week ago to get that person scheduled for the shot. Why they did not inform me at the same time, i do not know. Why they did not inform me when I called on Monday, I do not know. I guess I need to check out the side effects from that treatment, but I dont have too many choices.
That is what they want to do with me. I will see the doctor next Thursday, 3 weeks after my last Pet Scan, start me on a single injection of Dacarbazine and after the 30 days I would be able to start the BRAF trial. I could say I never heard of such a crazy thing, but I have seen other things like that on this board and other things that are even more crazy.
I just wanted to let everyone know that their doctors don't know everything. You would think they knew the protocols of the clinical trials that they were running, but I guess that is too much to ask.
I was planning on getting second opinions by Dr Kaufmann and Dr Gajewski, but I don't know if I can fit that into my schedule without using up my remaining few vacation days. I need to save 3 days for the day long blood tests every hour once I actually start the BRAF trial.
Enough for my rant for now.