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SuzanneMember
Greg, we will hope for the best for her. I think the fight against secondary is one of the hardest and I know the Midi sct is a brand new process so she is probably in “virgin ” territory as far as knowing what to expect.
SuzanneMemberI have been a lot of places-visiting my grandchildren for a few days-trips to the beach. Had no problems- but driving-not airplane. I would think a plane or cruise would be ok of his counts are ok. If the whites and neutrophils are low, he might consider wearing a mask on a plane. I understand the hesitance to be away but it also isn’t good to sit home and feel sick all the time.
SuzanneMemberBarbra, I asked what I was after reading something & they told me that I was hypocellular. It has never been discussed as anything that changes anything . If I remember correctly it deals with the size of the cells.
SuzanneMemberAlexa, does your friend have acute Myeloid leukemia or just acute leukemia? I think there are different kinds. Since he is seeing your dr. I would figure he is being taken care of by a knowledgeabe person for the type of disease he has.A second opinion might not hurt if he has the time. people on the forum have made it back when they were not expected to. When I had chemo it did take my counts down to about zero and they used transfusions of blood and platelets to keep me going until my bone marrow started functioning on it’s own.We are hoping for the best for your friend-22 is very young!
SuzanneMemberRon, check into Zarnestra. It was a big topic at the Hemo conference on the west coast recently. My understanding is that trials for use for older patients have been closed to collect data to submitt for approval for MDS and AML patients. I think it has had about a 30% rate of success in the trials for that use. I am currently taking it in a trial for use as a maintenance treatment for the first high risk year after remission from the heavy chemo I am taking a lower dose but have had almost no side effects. Plus it is taken in pill form. Have been in remission for over a wonderful year. As I have said before, when NIH found I had transformed to AML they told me that they did not think I had any choices. They did not think anything would work.Actually I did not have many choices without a lot of side effects when I had RAEB 2 with a high risk chromosome change but once I went into AML ,My doctors at Johns Hopkins recommended the chemo and it worked! I have been in contact with one woman through one of the forums in her 70’s who went through the chemo and is also in remission. I’m going to hope you find that you do have some choices. Anything you try except Vidaza. (my notes say Vidaza and 5- Azacytidine are the same thing)
SuzanneMemberBest of luck to you both. Sure hope things get dramatically better! will be watching for news.
SuzanneMemberI agree. They might look into whether he qualifies for medicare and medicaid. I also think the social services office at his hospital may find a way to work it out. Try not to stress yourself out. It is important that you stay healthy so you can help where you can.
SuzanneMemberkate, will be thinking about you and George. I have heard good things about Moffitt and I can say from experience that dealing with the right place and the right doctors can make a world of difference. Good Luck!
SuzanneMemberI was hypocellular had raeb with a 5Q- (which is a bad sign in Raeb) I started with about 10% blasts when diagnosed went to the upper teens in about 6 months and then jumped to 75% and Acute myeloid Leukemia. I had induction and consolidation chemo-came out in remission and am now on a trial of Zarnestra for the 1st high risk year to try to hold the remission. My quality of life has been good throughout and I have continuesd to live alone and run my household except for when i was in the hospital so don’t give up. something mya help your Dad. It does sound like he may have secondary MDS (you mentioned thyroid and prostrate cancer) and I understand that that is harder to deal with. So many advances are happening recently in treatments that it gives all of us hope.
SuzanneMemberMarsha, So glad to hear from you. wishing you steady improvement.
SuzanneMemberGood news Jody! Enjoy your trip and every day of good news you have.
SuzanneMemberFantastic Alexa, life is a lot easier that way!
SuzanneMemberI am the other way. lost about 18 lps during the consolidation round of chemo when the did not feed me for 21 days . I have recovered that and put on about 12 more. I love Ice cream and cream puffs but have decided I have to limit the “good stuff”. the say it could be my body over compensating for the time with no food and my nurses say it has happened to others on Zarnestra. So again nothing is uniform with this disease & it’s treatment!
SuzanneMemberPam, Sure am glad the chemo was easier then you were afraid it would be. Hope your good luck holds and that you are on you way to better days with a transplant and hope for cure!
SuzanneMemberwow, that is all three Transplant people hopefully on the way to recovery. Hope their road gets even smoother as they get farther along. Suzanne
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