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Suzanne
MemberMy understanding is that Revlimid is approved. Happened a couple of months ago. I understand that Zarnestra for patients your dad’s age that can’t do the heavy chemo is also being submitted for approval and that it has helped about 30% of those who tried it in trial. Don’t know whether it is appropriate for RARS. Suzanne
MemberFantastic news! As long as these various treatments work for some people , they are worth trying. Because you might be in the improvement category. I certainly have been. Suzanne
MemberApril, I certainly am hoping for the best for your Mom! But I do think that when we don’t have the strength to fight any more the end can be a blessing-Much harder on the remaining family probably then it is for the patient. Sounds like you-all are doing a wonderful job of helping and supporting her. Suzanne
MemberI have never had a blood pressure problem but I sure did with the chemo in the hospital.It went up to the 150’s over 90’s They did put me on medication for a while. Don’t know if the Zarnestra I am taking now makes any difference. But looks like the #’s have slowly gone back to my usual “low normal”. It has taken almost a year but most of that time it was not so high that they did anything but monitor. They do check it every three weeks when I go in for my CBC. And it is definitely higher when I am scheduled for a BMB (straight anxiety)Suzanne
MemberCarrie, wishing your Dad success with the vidaza. I do believe “good spirits” are beneficial. We are pulling for him! Suzanne
MemberIf her white blood count is low she may want to wear one of the heavier masks in an airplane. Suzanne
MemberShe might also ask about Zarnestra. My understanding is that it is on the road to approval in place of heavy chemo for older patients and that there have been some good results.. I have had almost no side effects to the maintenance dose I am taking. I think all the trials have been closed to gather final statistics to submitt for approval but she may be able to get it on a “compassionate need” basis. Suzanne
MemberMargaret, Hoping for the best for your Mom.she will be in my thoughts! Suzanne
MemberJim, I too have/had RAEB-t which transformed into AML. I did not have other problems and the heavy Chemo put me into remission(for a year Now). It has been over 2 years since they gave me a High risk prognosis (6-12 months to live.) and I am feeling well and living alone. I am now on low dose Zarnestra to try to prevent relapse and I understand from my trial nurse that that drug in a higher dose is on the way to being approved as chemo for older Patients like your Mom that might not be able to tolerate the heavy chemo. I have been under the care of an MDS center of excellence and Doctors that specialize and do reasearch in MDS and Leukemia from the time I went there 2 years ago for a consultation. There are some centers in Pennsylvania and you are also not too far from Johns Hopkins in Baltimore where I am treated.Don’t give up and go supportive care until you have investigated the possible alternatives.I sure am glad I didn’t. Suzanne
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