Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 I have good news!!!! My PCR numbers are down to 0.01 However, as some of you know I knew a friend who had cml and it didnt work out so well for him. Because of watching his journey i want to have a back up plan. I dont have a match for transplant so the only back up plan is something called " harvest and hold " of my own cells when I am PCRU. On sprycel, I am now at 0.01 and well on my way to PCRU. The problem is my insurance won't cover the harvest and hold procedure unless I'm in a clinical trial. Even more problematic is that there are NO clinical trials for harvest and hold in the US anymore because of the success of the drugs like gleevec and sprycel. I am grateful and thankful for the drugs, but i think we should investigate all options! You see drug development research has money sponsorship because the drugs are so expensive. Other options have NIH grants but the institutions need people interested and willing to participate in the research. Please know that I am very glad we have these drugs but i also know that the medical research in transplants has changed radically in 10 years. What if in 10 years it's much easier to get a transplant and we could thrive without medicines? Or maybe we could maintain on a super low dose of the drugs after a low impact transplant. We just dont know now but without research we wont know. If you think you may be interested in more info please email me. If we can compile a group of people interested in such a study, it may be possible to reopen the study. Please email me at sionito@... and i can tell you more. Thanks for 'listening' to my plea. Rhonda Sent from my Verizon Wireless BlackBerry [ ] Chat Reminder - Tuesday June 10, 2008 Chat Reminder - Tuesday June 10, 2008 Photos: Fine dining - Honky Tonk Sat Nite - Sunday Brunch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2008 Report Share Posted June 11, 2008 My Brother is a perfect match for me. Does anyone know if we could harvest his bone marrow, he is 62 and if something happened to him I would be screwed!!!!! Donna x > > Hey. > > I just wanted to throw something out. I am not sure if you already looked > into this but I got to PCRU on both Gleevec and Spyrcel and I had the harvest > in between the two drugs. My insurance wasn't gong to pay for it either. It > required my doctor compiling a letter including medical documentation as > proof of the needs for this, including the possible benefits someday if the > research advanced enough. We had to show that this procedure was not a clinical > trial of sorts and that it was medically necessary for a chronic Leukemic > patient. Well, whatever he put and sent to them, the insurance ended up covering > the whole thing. All my siblings ended up not matching too so I felt it was > important for me to have the stem cell harvest (just in case) and no time > better then PCRU, so I did it. I would encourage you to look into that with > your insurance or doctor if they haven't done so yet. It is certainly worth > checking into. You, however, sound like your on top of things so this has > probably already been done but if not, best of luck and I will keep my fingers > crossed!!! I just wanted to have it in case research came up with something > that I could use my own stem cells for. I guess we never know what is coming > up next with their discoveries. > > Best wishes- you'll be in PCRU in no time! > Hugs and Hope- > > 36 > CML 5/13/05 PCRU > Gleevec 800mg until 8/07 > Sprycel 100 mg since 9/07 > Wife and mother of 3 (12,9,7) > # 907 in Zavie's Zero Club > > > > **************Vote for your city's best dining and nightlife. City's Best > 2008. (http://citysbest.aol.com?ncid=aolacg00050000000102) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2008 Report Share Posted June 11, 2008 wow interesting i mean the harvest hold care to say more about it? new subject to me. hi jenifer i was just asking lottie about you yesturday how are you doing?did'nt you hve surgery a while back? if i'm wrong i apologize if not glad to see you post again . aliza yaffa **************Vote for your city's best dining and nightlife. City's Best 2008. (http://citysbest.aol.com?ncid=aolacg00050000000102) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 My Brother is a perfect match for me. Does anyone know if we could harvest his bone marrow, he is 62 and if something happened to him I would be screwed!!!!! Donna _____________ Hi Donna, I think I have heard of this before in the past....I am not sure that you would get insurance to pay for it because it is not a present treatment......or for the cost of storage. I think stored cells can be kept and used for something like 7 years. You might get an opinion and answer from a bone marrow transplant center. C. Quote Link to comment Share on other sites More sharing options...
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