Hi Cheryl-Anne, The Philadelphia chromosome was discovered in 1960 and the BCR-ABL kinase activity discovered only in 1990. That is 30 years of the researchers trying to understand CML. In 1998, Gleevec trials were started. It does occur to me that it is not easy to find a cure for CML. And in my opinion, it is harder to find a cure for chronic leukemias. It may be more on the mark to compare CML with CLL and slow-growing NHL. CLL is termed an incurable chronic leukemia and slow-growing NHL, well, you can live maybe 10 years or more with it, but it is incurable. Aggressive non-Hodgkins lymphoma, on the other hand, some are cured with chemotherapy. So, with aggressive disease, a fraction can be cured by drug therapy but with chronic disease, cure is more difficult. Of course, goes without saying that in aggressive disease, more can die of the disease, as well. Again ALL transplants for children may not be comparable with CML transplants, in CML, even after transplant, there can be residual disease and one also should find out what the relapse rate is with ALL transplants, there is a finite relapse rate. So, again the word "cure" always has to be used with caution.
Even blast crisis, which is aggressive CML and mimcs AML and ALL, that is the worst phase of CML and is unresponsive to sustained drug treatment. If blast crisis was really like AML and ALL, as soon as patients go to blast, some could be cured by drug therapy but that is absolutely not the case. That should illustrate how different a disease CML is from acute leukemias. The real problem of chronic leukemias- it is hard to find a cure. When my husband was diagnosed, the doctor gave him 7 years on Interferon, I am positive that with Gleevec, he will live many years more and I do not resent that he has to go on taking a med and he does not resent it, either. It is better than getting a sentence like 'only 7 years.' Of course, we both want a cure, who does not? But we are realistic about it, Roy is fine now, we lead a normal life and we wait to see what the doctors come up with realizing that it is not easy to come up with a cure. We will be very happy when and if a drug cure comes but we will still be happy as long as Roy remains in remission. Regarding a BMT, I think it is upto individials or families to make the decision to do a BMT. There is a mortality rate in BMTs, even for children. If parents accept that mortality rate and go ahead, I have supported them, fully. I agree with Terry, I would not want to be in their shoes making the decision. However, if parents choose not to go for transplant and rely on drug therapy for their kids, I find nothing wrong with this, as a caregiver to my husband, I am scared of BMT's mortality rate so why would not parents be? If BMT did not involve death, I think many would take this route, but unfortunately, even for children, there is a mortality rate. In the European CML expert consensus article published this year, 10-year overall survivals for children are quoted as 65-70%. So, there indeed is a 30-35% mortality rate. The relapse rate for adult BMTs at 18 years is quoted as 25% which again is not insignificant. There is a recent projected survival study done by Dr. Lichtman from U of Rochester comparing 10-year survivals of transplant and Gleevec. I think its 26 years for transplant opposed to 41 years for Gleevec (for CCR patients). This is not done by a drug company, but by doctors to help decide if early transplant after Gleevec CCR has more benefit than continuing on Gleevec. The main problem again is the early mortality from transplants and the good thing going for Gleevec is the decrease in relapse rate with time on Gleevec. From this article comparing Gleevec projected survival for CCR patients to transplant survival at the Hutch which has the best transplant rates, Gleevec still fares a bit better. However, bear in mind that for Gleevec, it is a projected survival rate based on math, Gleevec is only 5 years worth of data. The take home message is that there is great probability of long-term survival on Gleevec. BMT is always associated with long-term side-effects so I do not see a difference in this respect. I recently met Jeannie Matthews and she is 3 years post-SCT, she is still taking meds and I had her talk to one of our clinic patients who has to decide BMT versus Gleevec and when the patient heard that Jeannie was still on meds, that decided for the patient to continue on Gleevec since you have to be on meds for long-term, anyway, and so why do a procedure like transplant that also carries with it a risk of death.(this was the patient's reasoning) The patient had thought a "cure" meant go back to pre-CML life without worries and so I had her talk to a BMT survivor. I thought she had a simplistic view of transplant. A few BMT patients, especially, those who have matched siblings, do have good QOL long-term than the rest but one would not know beforehand if one would fall into that category. CML has struck, whatever therapies we choose, there will be an impact on QOL long-term and it is better to accept that and move on with our lives, making individual decisions on therapy, based on information and medical consultations. Best Wishes, Anjana --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
