2nd Opinion = 1st Opinion plus Rads

Hopkins visit was good- but disappointing. The doc there said that she wouldn't want me on either trial she's running (for my own good!). She said that so far my treatment plan has been fine, and that my plan for stem cell transplant at GW is also fine, but that she would add radiation to all the spots I had activity when I was first diagnosed because she considers me "refractory" - that means resistant to chemo. So even though I had what I thought was a decent response to chemo, apparently, because I didn't get a complete remission yet, it's not good enough, and points to the possibility that chemo isn't really gonna work. HOWEVER, she said that stem cell transplant, plus radiation (which kills cancer differently and might truly be the best hope), is still a possible cure, and that there is no reason not to have hope and keep my fingers crossed. However, she was very blunt about the stats of this not working.

She said if/when I relapse, that I should come back to her to discuss an allogeneic transplant using my brother or father (my mom might have cancery cells). I think I will probably go down to see Dr. Younes at MDA also, to see what he would recommend. I have a gut feeling that I don't want to do an allo transplant until I really, really have to, and that I would rather try a clinical trial OR the doc at Hopkins mentioned that SGN-35, which is showing great results for people in my situation, might be FDA approved by the time I relapse. So, I would hope that is available to try somewhere close to home. In addition, the next "hot" trial (from what I can see) is RAD001, which is currently being tested at Georgetown. I would love to get treatment in DC and not have to uproot, but of course I will follow any path that leads to a potential cure (as long as it doesn't destroy my quality of life- which I feel I have the right to preserve).

Going back to Dr. T today to talk about next steps in trying to get my stem cells out, discussing the drug Mozobil and a new schedule for transplant. If mozobil fails I am guessing they will do the bone marrow surgery and get the stem cells out from there (NOT looking forward to that, so please send a shout out to my bone marrow to get those stem cells out into my blood this time!!)

That's all for now, folks. Stay tuned!