Waiting on Trial, got Brain Mets...

[julierene]

I was waiting on this perfect trial for my genetic p53 issue, but they required 4 weeks of being off therapy with growing disease. They had to have something to "measure". During my talks with the doctor who lead the trial, I asked "What about brain mets?". His initial reaction was that it 'should' work on them too. Well during my pre-screening I asked the nurse if she could check out my head, because I had felt a little like a sinus headache had been hanging on too long.

I was supposed to start the trail today, and I found out on Thursday that the brain CT had spots of salt and pepper everywhere and that I have one little 12 mm tumor too. They are putting my trial on hold until I get WBR (which is starting today). Apparently, the low blood pressure and high-grade fevers made them very nervous about putting me in the trial right now. But the BAD part is, if I don't get the brain mets under control, I fear where this might be headed. I have 3 children 10,9, and 5. I was divorced by a cheating husband 2 years ago, but leaning on my parents and boyfriend a lot right now.

I am so scared, even though the radiologist said he felt 80% responded to the 3 week / 14 day WBR cycle. And this is really stupid too, but I have lost my hair 3 times since I was 28. I am 34 years old, and SICK of loosing my hair. Doesn't the hair get tired of coming back after loosing it so many times? How vain is that? I just want to keep what I have, and not feel so battered by cancer anymore. Loosing my hair felt worse to me than my breasts!

I know you women understand. So I am hoping I can get some kind of reassurance that my hair will grow back, that maybe this WBR therapy will work long enough to get me back in the p53 trial. It's my only chance at getting something that might work. I have a p53 mutation, and I have been watching the trials for about 6 years now. This one seemed like my shot, now was the day I was waiting for... and it just got snagged right out from under me.

I know that I might get another chance at it, but I am terrified that I trusted this trial doctor with my life, and I took the wrong gamble. If I just could have ignored the 'sinus' pressure and little hints of dizziness, I would be sitting in the trial right now. I am so upset with myself. I am so upset with the trial doctor saying that they thought it would penetrate the blood-brain barrier. If I had ever thought I might get 'put on hold', I never would have had it checked. How do I deal with this huge mistake? I feel like I just cost myself my life... and it's all my fault or something...