Mom went from MDS to AML

[jfensterer]

Hello, I really am not one to post….I guess I am a “watcher”. I am an only child, married to a wonderful man and have a beautiful 8 year old son. But, here I am with my bestest friend in the world in the hospital with AML. She is pale, has bruises everywhere, she has 58% blasts and my heart is so heavy. They will start her on dectibine & an anti-gout med. on Monday. I just hope she will be able to come home and have a good remission.- Please in the ring of prayers, please keep Dorothy Hasey in that ring. She is a wonderful mother, she has a great sense of humor
and she is my everything. This is, like so many, a dreadful disease….BUT, I do believe there is a much better place, without pain, sickness and sadness…..
IN the mean time……I would still love the opportunity to take really good care od her…..please keep this “depression era child” in your prayers. She has been such a good Mom and friend to me-
Thanks, so very much-
Jan

Can anyone tell me if they have gotten some kind of remission with this therapy?

Any comments would be so welcome….
Thanls again-Jan

[Russ P.]

Jan, prayers for you and your mom. Has she been tested for EPO? Mine was normal to high and yet my hemo still seemed to push the Aranesp. I think it helps if you have low EPO but if not it may make thing s worse. (Just my opinion)

[josey]

Russ, I am still pretty new to all of this. What is the EPO test you mentioned? Want to learn as much as possible. Thanks Joanne

[lynette]

Jan,
I can truly understand your heart-ache. I felt the same way about my Mom. She did achieve a remission with Arsenic and ARA-C. Decitibine has been shown to be successful in some patients.
I will keep you and your Mom in my prayers. Keep the faith, and have hope!
Lynette

[Russ P.]

Joanne, EPO is hard to spell but I think it is Erythopoeitin. It’s a growth hormone that the body makes to help produce red blood cells. Aranesp and Procrit are EPOs made by the Drug Mfgs that recently were black labeled by the FDA. These drugs were approved for anemia caused by kidney problems and not for MDS.
Best wishes,

[Russ P.]

Joanne, forgot to mention that the laabs can check for EPO when they sample for CBC.

[Jeff]

Jan,

my wife was diagnosed with AML in Sep 06. The cause was from chemotherapy she received during he bout with breast cance 5 years ago. She beat breast cancer but came down with this hideous disease. I just wanted to share with you my wife’s experience with Decitabine. She has been on it now for 3 months and her blast cells do go down considerably after initial treatment but work their way higher 4 weeks later. Dosage is being upped 20% this week. Anyways this seems to be our last hope along with weekly transfusions. Her blasts were as high as 50% at times. Hope it works for your friend.

[Russ P.]

Jeff, my prayers for you and your wife. There is a bulletin board at http://www.LLS.org. If she is not too old like I am perhaps the 7-3 induction/consolidation therapy might work.

[jaxem]

jeff
my wife went through same ordeal as yours, just about 5 years to the day she dx mds. she’s also on decitabine since 2/07 w/ semi-weekly clinic visits incl. transfusions. decitabine is normally on a 6 week duration & you need at least 4 rounds of it for it to take hold. never heard of increased dosage w/ it; supposed to be given per body mass. may I ask your wife’s age?

russ
i believe the 7-3 chemo age limit is under 60; there’s another chemo regimen for older patients (to age 65)called MEC.

[katiebear]

Jan,

My dad turned to AML also. He is being admitted to Sloan today to start induction chemo in hopes of getting him into remission for a SCT. My aunt is a match for him which is good. He has 50% blasts in his blood. We are very scared. From what he says his doctor is confident that she can get him into remission. I am praying that happens. You and your mom are in my prayers.

Katie

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