← Return to Devastated by support group meeting: I'm doing everything wrong

Discussion
Comment receiving replies
Profile picture for wheel1 @wheel1

@jcf58
23 years ago I entered a clinical trial at UCLA on a personalized vaccine developed for my cancer, non-hodgkins lymphoma. It was randomized which gave me concern, and you have to go through all the tests like having surgery to pull a lymph node out for the possibility of the vaccine, giving yourself self 3 daily injections for six months after your possible vaccine shot by the doctor each month. Extra bone marrow biopsies during treatment, still getting the standard of care of 6 months of chemo before the trial. Two years I relapsed, was unblinded and found out I did get the personalized vaccine. I was back to just a standard of care monoclonal antibody infusion this time for treatment. Several more years passed and ultimately the clinical trial was determined a failure as most are, but my oncologist was and still is that I have now had a miraculous 18 year remission. He said their is no way to ever know now, but subsequently the vaccine might have had some synergy with the later monoclonal antibody. He was intrigued. Then three years the prostate got me, and I also looked again into clinical trials.

Jump to this post


Replies to "@jcf58 23 years ago I entered a clinical trial at UCLA on a personalized vaccine developed..."

@wheel1 All I can say is that you are a warrior. That is amazing about your 18 year remission. Not the same, but my wife has diagnosed 26 years ago with a serious lung disease (PH). They told her to make her plans. She's still hanging in there and now there dramatically more amazing treatments for PH then way back when (basically three then, Flolan, lung transplant or a few rare responders to CCBs, which she was).

I guess the task is to stick around long enough that we can take advantage of the new technology. Safe travels on your journey!