Question about AML/MDS

[PAG2005]

Hi,

I’m new on this board. My mom is in her early 70’s and was diagnosed with AML in February.
She went through induction treatment and went into remission but relapsed a few months later. She went through a second induction treatment and went into remission again. She was very weak after her 2nd induction treatment but her counts were climbing and then stalled. Her wbc and platets are now low and she needs occasional transfusion of platelets.. I asked her Dr. if my mom had secondary MDS but she didn’t think so because she didn’t feel that she had enough chemo to cause it. She thought it was just going to take some time for her counts to rise. Lately she mentioned she might have post MDS.. Has anyone had this experience? We are trying to find out if she is eligible for a mini-transplant. Any information would be appreciated. Thank you. Pat

[Suzanne]

Hi Pat, I was told that it takes the counts longer to come up every time you have chomo and that after the first time the platelets are the most effected. I had Induction and then 30 days later a second round follow up round of 2 of the three drugsI had for induction. I too went into remission with the first round but so far I have not relapsed. It took my counts over 30 days to come back the second time. Then they put me on a Zarnestra trial for a year hoping to increase my chances of staying in remission. I am a little younger then your Mom-I’m 63 & had no other medical problems. If you Mother is in remission again, you might check on the zarnestra trial going now in many places that is open to patients in a second remission but I do think they will want her counts up to a certain level. Barbra’s husband Ron is on that one. It is listed on the government list and is being run by Encologists instead of Hemo’s. I have had almost no side effect since they got the right dosage level for me. Zarnestra is a pill and is also used for older people who for one reason or another can’t take the induction chemo. Suzanne

[PAG2005]

Hi Suzanne,

I will check into Zarnestra.. What are some of the side effects? I’m glad that it’s been working for you. Thank you so much… Pat

[B. Greene]

Hi, Ron is on the Zarnestra as well. Suzanne has had hardly any side effects. Ron is still trying to get stabilized on the drug. I believe the reason he is having problems is because of the much higher level of chemo he has had. This was a second remission for him and after five rounds of very intense chemo which left him with problems Suz didn’t have. We have high hopes for the drug and agree with Suz that it is certainly worth checking into.

[Suzanne]

Pat, any side effects I have are so minor that I would not notice unless I was watching. they don’t even knoe for sure whether the mild things I do have are due to the zarnestra or the original induction chemo. I have gained weight (my nurses say this has happened to others even tho the Dr’s say there is no weight gain documented) I sometimes have a slight amt of gas-in my digestive tract(acid reflux)I have trouble absorbing and retaining new information. And occasionally my eyes get tired and I have trouble focusing. they tell me all these things are typical from any type of chemo. None bother me much. I walk almost 3 miles a day, take a jazzercise class a couple times a week and have gone back to work part time so you know things are pretty normal for me.

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