Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 Therese & Group, Tom had a LOT of complications. He is over 600 days post-transplant and still struggling. I would suggest that you consult with a CML specialist and seriously look at other medicines before going to transplant. I have known kids who died post-transplant. I have known others who did OK post-transplant and suffer few, if any complications. Here are some websites for people with CML who have had transplants. Click on journal history to read their " stories " . http://www.caringbridge.org/wi/tomneddo/ http://www2.caringbridge.org/co/russ/index.htm http://www3.caringbridge.org/ms/james/ http://www2.caringbridge.org/mi/gloriadunford/index.htm User Name: gloriaspage Password: xmas1234 http://www2.caringbridge.org/canada/adam/ http://www3.caringbridge.org/nj/kelly/ http://www2.caringbridge.org/ca/robglatts/ http://www.caringbridge.org/cb/inputSiteName.do? method=search & siteName=richardconstable http://www.caringbridge.org/page/shannon/ http://www.caringbridge.org/cb/inputSiteName.do? method=search & siteName=martyncoyne http://www.caringbridge.org/ny/mattysupdate/ http://www.caringbridge.org/or/jeanniematthews/index.htm http://www.caringbridge.org/mo/rschneid54/index.htm http://www.caringbridge.org/tx/dane/ http://www.caringbridge.org/cb/inputSiteName.do? method=search & siteName=marisabielen http://caringbridge.org/ak/marks/ http://www.maxhorwood.com/ http://www.caringbridge.org/cb/inputSiteName.do? method=search & siteName=shiraweisbach http://www.caringbridge.org/tx/stephenthompson/ Here is information that I posted to another group: 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, Eagle River, WI http://www.caringbridge.org/wi/tomneddo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 Hi Barb, I just wanted to say what an outstanding and informative post this was. Not only was it full of information but it was from someone who's " been there, done that " and I think that speaks volumes for all of us. Thank you so much for taking the time to write it. I've often said that CML (and it's by-product) is harder on the families than it is on the patient and I say that as a patient. I can't even fathom what you've been going through as a parent making these kinds of life and death decisions for your child. My heart goes out to you and your family. Above all, I hope that Tom will soon get over the hump of complications from his BMT and live a life that every child should be able to live, a carefree and happy life where health is not an issue. All my best, Tracey > > Therese & Group, > > Tom had a LOT of complications. He is over 600 days post- transplant > and still struggling. I would suggest that you consult with a CML > specialist and seriously look at other medicines before going to > transplant. I have known kids who died post-transplant. I have known > others who did OK post-transplant and suffer few, if any > complications. Here are some websites for people with CML who have > had transplants. Click on journal history to read their " stories " . > > http://www.caringbridge.org/wi/tomneddo/ > http://www2.caringbridge.org/co/russ/index.htm > http://www3.caringbridge.org/ms/james/ > http://www2.caringbridge.org/mi/gloriadunford/index.htm User Name: > gloriaspage Password: xmas1234 > http://www2.caringbridge.org/canada/adam/ > http://www3.caringbridge.org/nj/kelly/ > http://www2.caringbridge.org/ca/robglatts/ > http://www.caringbridge.org/cb/inputSiteName.do? > method=search & siteName=richardconstable > http://www.caringbridge.org/page/shannon/ > http://www.caringbridge.org/cb/inputSiteName.do? > method=search & siteName=martyncoyne > http://www.caringbridge.org/ny/mattysupdate/ > http://www.caringbridge.org/or/jeanniematthews/index.htm > http://www.caringbridge.org/mo/rschneid54/index.htm > http://www.caringbridge.org/tx/dane/ > http://www.caringbridge.org/cb/inputSiteName.do? > method=search & siteName=marisabielen > http://caringbridge.org/ak/marks/ > http://www.maxhorwood.com/ > http://www.caringbridge.org/cb/inputSiteName.do? > method=search & siteName=shiraweisbach > http://www.caringbridge.org/tx/stephenthompson/ > > Here is information that I posted to another group: > 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, > Eagle River, WI > > http://www.caringbridge.org/wi/tomneddo > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Dear Barb I am going to print out this email and whenever I feel scared, unlucky, angry or anything else negative about and his cml - I will go on my knees and say a prayer for Tom and you and all your family, then take a deep breath and know that I can get through whatever comes at us. We have been so very fortunate that was dx'd so early, that Gleevec is working so well and that he has a truely amazing attitude to all of this. It re-reading stories of others that gives me strength again - and yours really lightened my soul tonight. Thank you, Barb and Tom and all your family for your strengths and your sharing, and through this, strengthening me. Love Annie Mom of > > Therese & Group, > > Tom had a LOT of complications. He is over 600 days post- transplant > and still struggling. I would suggest that you consult with a CML > specialist and seriously look at other medicines before going to > transplant. I have known kids who died post-transplant. I have known > others who did OK post-transplant and suffer few, if any > complications. Here are some websites for people with CML who have > had transplants. Click on journal history to read their " stories " . > > http://www.caringbridge.org/wi/tomneddo/ > http://www2.caringbridge.org/co/russ/index.htm > http://www3.caringbridge.org/ms/james/ > http://www2.caringbridge.org/mi/gloriadunford/index.htm User Name: > gloriaspage Password: xmas1234 > http://www2.caringbridge.org/canada/adam/ > http://www3.caringbridge.org/nj/kelly/ > http://www2.caringbridge.org/ca/robglatts/ > http://www.caringbridge.org/cb/inputSiteName.do? > method=search & siteName=richardconstable > http://www.caringbridge.org/page/shannon/ > http://www.caringbridge.org/cb/inputSiteName.do? > method=search & siteName=martyncoyne > http://www.caringbridge.org/ny/mattysupdate/ > http://www.caringbridge.org/or/jeanniematthews/index.htm > http://www.caringbridge.org/mo/rschneid54/index.htm > http://www.caringbridge.org/tx/dane/ > http://www.caringbridge.org/cb/inputSiteName.do? > method=search & siteName=marisabielen > http://caringbridge.org/ak/marks/ > http://www.maxhorwood.com/ > http://www.caringbridge.org/cb/inputSiteName.do? > method=search & siteName=shiraweisbach > http://www.caringbridge.org/tx/stephenthompson/ > > Here is information that I posted to another group: > 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, > Eagle River, WI > > http://www.caringbridge.org/wi/tomneddo > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 My heart goes out to both Tom and , as well as you parents of these two brave kids. I don't post often as I use to due to issues in my life I am trying to resolve, but it just tears me up when I read kids having to deal with CML. I was lucky(if you would call it that) and did not come down with the bug until my late 30's. Hang in there guys, you'll do fine. And to you two brave parents...Hang in there as well, it sounds like these two boys are lucky to have had mothers like you two to help them get through all this. Terry On 1/4/07, Annie <ibannie@...> wrote: > > Dear Barb > > I am going to print out this email and whenever I feel scared, > unlucky, angry or anything else negative about and his cml - > I will go on my knees and say a prayer for Tom and you and all your > family, then take a deep breath and know that I can get through > whatever comes at us. > > We have been so very fortunate that was dx'd so early, that > Gleevec is working so well and that he has a truely amazing attitude > to all of this. It re-reading stories of others that gives me > strength again - and yours really lightened my soul tonight. > > Thank you, Barb and Tom and all your family for your strengths and > your sharing, and through this, strengthening me. > Love > Annie > Mom of > > > > Therese & Group, > > > > Tom had a LOT of complications. He is over 600 days post- > transplant > > and still struggling. I would suggest that you consult with a CML > > specialist and seriously look at other medicines before going to > > transplant. I have known kids who died post-transplant. I have > known > > others who did OK post-transplant and suffer few, if any > > complications. Here are some websites for people with CML who > have > > had transplants. Click on journal history to read their " stories " . > > > > http://www.caringbridge.org/wi/tomneddo/ > > http://www2.caringbridge.org/co/russ/index.htm > > http://www3.caringbridge.org/ms/james/ > > http://www2.caringbridge.org/mi/gloriadunford/index.htm User > Name: > > gloriaspage Password: xmas1234 > > http://www2.caringbridge.org/canada/adam/ > > http://www3.caringbridge.org/nj/kelly/ > > http://www2.caringbridge.org/ca/robglatts/ > > http://www.caringbridge.org/cb/inputSiteName.do? > > method=search & siteName=richardconstable > > http://www.caringbridge.org/page/shannon/ > > http://www.caringbridge.org/cb/inputSiteName.do? > > method=search & siteName=martyncoyne > > http://www.caringbridge.org/ny/mattysupdate/ > > http://www.caringbridge.org/or/jeanniematthews/index.htm > > http://www.caringbridge.org/mo/rschneid54/index.htm > > http://www.caringbridge.org/tx/dane/ > > http://www.caringbridge.org/cb/inputSiteName.do? > > method=search & siteName=marisabielen > > http://caringbridge.org/ak/marks/ > > http://www.maxhorwood.com/ > > http://www.caringbridge.org/cb/inputSiteName.do? > > method=search & siteName=shiraweisbach > > http://www.caringbridge.org/tx/stephenthompson/ > > > > Here is information that I posted to another group: > > 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, > > Eagle River, WI > > > > http://www.caringbridge.org/wi/tomneddo > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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