Dads AML–Zarnestra or other drugs?
January 28, 2005 at 12:34 am #3710mitchMember
I am new to this board so please bear with me if I run on at the (mouth?)A week ago we were told my dad has AML (myleoblastic) Dad is 81. About 18 months before this diagnosis he was diagnosed with refractory anemia but a bone marrow than showed no leukemia cells.His health has generally deteriorated over the past two months culminating in a confirmed diagnosis of AML last week.
His hemotologist (in whom I have alot of confidence) gives dad no hope. He has advised that Dad will not survive chemo, and we accept that. My Dad would not try it even if it were oferred.
So we are left with whatever experimental non chemotherapy drugs might be out there that present the possibility of extending life.My father has asked me to help him explore whatever might be out there but he is resolute that he would rather have the three to four months the Dr. can give him (with transfusions)with his family than get six months from a drug that causes him to be debilitated or hospitalized half the time.
I am in the process of getting an appointment at Sloan to discuss any possibilities they can offer.I want to attend that apppointment informed.I have found some of the literature on Zarnestra but cannot find all the protocols to see if Dad is excluded.Can anyone help me with this?
Zarnestra is the only thing I have been able to locate for patients similar to my Dad (age, ineligible for chemo)but I am new to this and not a DR.Is anyone aware of any other drugs in clinical trials for patients similarly situated to my Dad?
Finally I am taking Dad to Sloan because of a family connection to two Drs there that come highly recommended as specialists in AML.If Sloan is not doing trials for Zanestra do Drs usually tell you where you can go to explore other hospitals trials?
Any information anyone can provide will be helpful. Thank You.January 28, 2005 at 2:52 am #3711SuzanneMember
Mitch, They don’t always keep track of what is offered besides what they are working on at their institution.Go to http://www.clinicaltrials.gov to see a list of what is going on all over.they list the patient criteria and give you contact info for questions There is also a list on the homepage of this site.
I know zarnestra has been used in place of the heavier chemo for older patients with a fairly good rate of improvement and not too many side effects. I am taking it in a lower dose in a trial using it as a maintenance drug for patients in remission. I have had almost no side effects but that is not true for everyone. My understanding is that the trials using it in place of chemo have probably been closed to collect data to submitt it for approval.I would think most center of excellence dr’s would know about it since it was a very positive presentation at the recent meeting for Hemo’s on the west coast.I even saw a bit about it in Cure Magazine. Don’t let your Dad get too hung up on the term”no chemo”, Even zarnestra is often referred to as a ‘chemo’.
If there are other alternatives once one has gone into AML, I don’t know about them but they are developing new trials with different drugs and combinations of drugs all the time. At the same time when I was looking at what to do over a year ago there was not a lot of difference statistically in going with drug trials and settling for supportive care once quality of life was factored in. I don’t know if that has changed. I think that most people in their 80’s go with supportive care but every case needs to be looked at on an individual basis. SuzanneJanuary 28, 2005 at 1:51 pm #3712TerriMember
Mitch I wish you well at Sloan and hope that the doctors can offer some insight in treatment.
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