Dr. Druker talked to us for an hour and a half. He faxed his dictated notes. Any quotes from his notes I have italicized. He went over the treatment success predictors for Tommy. If you follow the posts on this group, Mark Peterson posted a formula called the Sokal score that included these predictors. There are four things you look at: size of spleen at dx; platelets at dx; age and blasts at dx. Tommy was 2/4 - big spleen and % of blasts, low platelets and young age. So he came out half and half for these factors.
Then Dr. D. went over his current research about predicting the rate of relapse per year of patients on Gleevec. This was very interesting. If you listened to the lls teleconference and had the booklet, you got the info. I believe that this info. may have been posted to the yahoo group and will probably be posted on the lls website in the future. Dr. Druker is a very kind, knowledgeable and wonderful person. His research says that there is a 4% relapse rate per year of patients on Gleevec. The percentage of relapse rate per year goes down if you reach complete cytogenetic response (2%) and even less if you reach a three log reduction (.5%). If you look at the general % of survival for SCT, you would see that it is about 60% so that after ten years on Gleevec, the survival rate for Gleevec treatment success and SCT would be the same. After ten years, the rate of relapse would be less for SCT. However, the Gleevec data is new and no one knows if the relapse rate will continue to be 4% per year or if it will go down or up. Dr. Druker also talked about pediatric BMT's being more successful. I quote, ...survivors of an allogenic stem cell transplant have a very high cure rate with relapses being less than 10% overall. (of the survivors of allogenic SCT - 90% will be leukemia free) However, the mortality rate from allogenic stem cell transplant varies with the age of the patient and the match of the donor. However, in younger patients this should be no greater than 15% to 20% (80-85% survival rate) with a 10 of 10 unrelated donor match (Tommy has a 12/12 unrelated donor match). As far as long-term complications from allogenic stem cell transplant, these would include a slight increased risk of secondary malignancy (other cancer later in life) as well as a risk of chronic graft-versus-host disease.
As for his recommendation, I quote from Dr. Druker, For some of our younger patients, we have advised that transplant needs to remain a treatment option regardless of response to Gleevec given the unknown long-term outcome of Gleevec therapy. As far as potential delays in transplant (a concern we expressed about delaying the transplant and decreasing the chances of survival), we discussed that most of the data relates to an era when ineffective treatments were available for CML. Thus, it is possible that by achieving at least a cytogenetic remission on Gleevec, transplant outcomes might actually be improved. ... Certainly, for some of our patients, we have closely monitored PCR and would recommend transplant at the early sign of a PCR relapse. However, for other younger patients, they have opted for allogenic stem cell transplant regardless of their response to therapy. We discussed that either approach would be an acceptable treatment option. Ultimately, the patient and his family will need to decide between these treatment approaches. Dr. Druker stressed that either option would be OK and that once we made the decision, we shouldn't look back.
Right now we are leaning towards transplant (given the higher success rates for SCT for pediatric patients provided by Dr. Druker). We have not made a final decision. We would like to call the transplant doctor and get more info. on survival rates and see if he absolutely has to use total body irradiation. If you need any clarification, email me. I didn't get into all the details of the notes because I didn't want the email to get any longer.
Enjoy the new year.
Barb Neddo in Eagle River WI
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