Guest guest Posted March 17, 2007 Report Share Posted March 17, 2007 Hi, I can confirm. I was speaking to him just a moment ago on the chat. The mortality rates for BMTs are just too high for my liking. Zavie [ ] Re:Tracey-thanks! Hi , Skip posts here from time to time and I remember him saying that he's never had a transplant. I could be wrong but I don't think he's ever been in CCR either. Skip, if you're reading this, can you confirm? Tracey -- In , nchando@... wrote: > > Hey Tracey! Thanks for reminding me of Skip! I read a post of his once, > and was shocked at the length of time he's had CML! Great news! He never had > a transplant did he? I feel that as long as we can avoid transplant, we can > hopefully stick around. > in NY > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2007 Report Share Posted March 17, 2007 Hello Tracey and , Tracey thanks..I do not post often only if I think I can add something to the group. I read all.... no I never had a transplant, when I first took CML that was not an option. Nor was a lot of things we have today. I think after being on Myleran it spoiled the chance of a transplant, I am not sorry I think I would not have survived so long if I had had one. In fact after a few years on Mylerand ( BUSULFAN)many of the folks that had various forms of leukemia had not survived with a BMT. Now they seem to survive just fine I see BMT patients all the time in med day and they do just fine. Your right Tracey I never had ccr either, in fact never heard of FISH PCR or any of the other names until last couple of years thanks to you and Zaviem and this wonderful group. I have started a log of my low counts so that others with either low or high counts know that they are just another blip on the road and not to be overly concerned. SkipD Dx'ed 1978 http://easyskip.tripod.com for my counts and story --- Tracey <traceyincanada@...> wrote: > Hi , > > Skip posts here from time to time and I remember him > saying that he's > never had a transplant. I could be wrong but I > don't think he's ever > been in CCR either. Skip, if you're reading this, > can you confirm? > > Tracey > > > -- In , nchando@... wrote: > > > > Hey Tracey! Thanks for reminding me of Skip! I > read a post of his > once, > > and was shocked at the length of time he's had > CML! Great news! He > never had > > a transplant did he? I feel that as long as we > can avoid > transplant, we can > > hopefully stick around. > > in NY > > > > ________________________________________________________________________________\ ____ Get your own web address. Have a HUGE year through Small Business. http://smallbusiness./domains/?p=BESTDEAL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 Hi hollyt0825, I posted this on another CML list, but I will paste it here. My son went through a BMT for CML on 5/05/05. His journey has certainly had a lot of ups and downs. He is almost two years out and still experiencing some minor complications. I offer you this post. You can contact me publicly or privately if you want to discuss this further. My son, Tom, was 15 when diagnosed with CML (8/13/04). He had no sibling HLA matches, so he had a fully matched, unrelated donor bone marrow transplant on 5/05/05. His donor was a 41 year old male. Before deciding on the transplant, Tommy (son) visited with Dr. Druker, the developer of Gleevec. Dr. Druker stated that Tommy was probably a 50% candidate for Gleevec failure because of having a lot of blasts at diagnosis and having a very enlarged spleen at diagnosis. Dr. Druker said going with a BMT was our decision and he couldn't tell us to go either way. Dr. Druker was very kind and compassionate and explained about Gleevec and relapse rates. The next thing Tommy did was go to University of Minnesota at Fairview to the BMT clinic for a consultation on transplant. We consulted in Minneapolis twice with both doctors assuring us that BMT was the route to take and that the survival of patients having CML and receiving BMT's at the U of Minnesota facility was very good. In April of 2005, we moved to the Mc House in Minneapolis and Tommy started his chemo and radiation regimen at Fairview hospital. I can tell you that watching my child go through chemo and radiation and all the side effects (nausea, vomiting, diarrhea, hair loss, isolation) was heart wrenching and hard on the whole family. Tom was in the hospital for four weeks after his transplant. Complications that came up after the transplant: mucositis (mouth sores from the radiation that kills all the fast growing cells in the body) This lasted a couple weeks. http://www.cancer.gov/cancertopics/pdq/supportivecare/ oralcomplications/healthprofessional/allpages/print#Section_271 CMV - cytomegalovirus which Tommy had before transplant, and came back after his immune system was suppressed. This was treated with anti viral drugs given intravenously. This lasted a few weeks. http://www.biomedcentral.com/1523-3820/4/43 graft vs host disease of the skin which caused all his skin to slough off (a bit at a time) and was treated with IV immune suppressant (CSA/ gengraf/cyclosporine ) and high doses of prednisone. He had this twice. http://www.chronicgvhd.org/ http://www.emedicine.com/PED/topic893.htm nausea and vomiting for months at a time with no cause determined gall bladder removal to treat the nausea and vomiting (it didn't work) AVN or avascular necrosis (bone death) from long term prednisone use. This has just occurred and we are dealing with this now. http://www.merck.com/mmhe/print/sec05/ch064/ch064a.html diabetes from prednisone use (this is now gone) high blood pressure from one of his medicines (this is also gone now) seizures from his immune suppressant medication (CSA/gengraf/ cyclosporine) This was very scary. http://circ.ahajournals.org/cgi/content/full/94/6/1209 http://molinterv.aspetjournals.org/cgi/content/full/4/2/97 infertility because of the radiation - permanent hair loss after chemo and radiation. This was temporary (lasted about three months). Tommy's hair came back very full and curly. Before his hair was fine and straight. He used to have light brown hair. Now his hair is brown and red/brown. If you would like more information about Tom's experience, you can review the journal history (very long): http://www.caringbridge.org/wi/tomneddo Feel free to email me and ask questions, etc. Barb Neddo, mom to Tom, 18, Eagle River, WI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 Holly, The links are very long. You may have to copy and paste them to get them to work. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 Dear Holly, Our posts were not directed at you. We had no idea what you were experiencing and going through. I am always seen to be negative when it comes to transplants and I must tell you why. There have been too many CML patients that I have known personally who have died as the results of a BMT. What really upset me was the fact that they were pushed into a transplant by their doctors. From what was posted on this list, we knew that these were transplant doctors and they offered the patient a cure for CML. What they never did was explain the mortality statistics of the procedure. When I offer my opinion on whether to go to transplant or not, I always advise the patient to have a consult with one of the top CML specialists (Druker, Talpaz, Goldman, etc) and ask their opinion. Only if they indicate transplant should the patient go ahead. Some situations are not that straight forward. Take Barb's situation with her son Tom. She consulted with Dr. Druker. He said that there was a 50% chance that Tom's CML would relapse and that the decision to transplant was theirs. I cannot imagine the burden and stress that was placed on Barb and the family. We have always supported the patients who went to transplant and have always been kind to them. That being said, once their decision was made, I have always urged them to go to the best transplant facility that they could. We all know that different facilities have much different outcomes with the Fred Hutchison being on top of the list. In your case it appears that you have decided to go to transplant. We wish you all the best in this procedure. I would certainly urge you to keep us updated on your progress. Your story (like Barb's) will certainly help others in their journey with CML. You should also consider starting a Caringbridge site and keeping us informed on your progress. Zavie Zavie (age 68) 67 Shoreham Avenue Ottawa, Canada, dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem [ ] Re:Tracey-thanks! Hi all. I have been a member here for a pretty long time. I don't post often but I like to read the posts for information and usually feel encouraged and hopeful after leaving. However, after reading this thread I don't know that I will be back. After 7 years of remission on Gleevec I have suddenly, with no warning, advanced to accelerated phase. I am on Sprycel at the moment but my numbers keep crashing with it, and because there is no way to know what will happen with sprycel long term, I really have no choice at the moment but transplant. I came here to see if I could find any encouraging info on bmt and found this. This site has been helpful to me in the past but I feel like I just got punched in the stomache. Please, please, in the future, think about how your words might affect someone else reading them.I'm sorry to post something so negative but I just had to remind everyone that you don't know who might be reading or what they might be going through. > > > > Hey Tracey! Thanks for reminding me of Skip! I read a post of his > once, > > and was shocked at the length of time he's had CML! Great news! He > never had > > a transplant did he? I feel that as long as we can avoid > transplant, we can > > hopefully stick around. > > in NY > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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