decitabine side effects

[lucym]

My Mom started her 5 day treatment on Friday and is suffering from severe diarreha. Can any one tell how long it lasts after the 5 days of treatment. Also any other information on other side effects would be appreciated.
Thanks
Lucy

[kristyk]

Hi Lucy
My Mom has not had any diarreha side effect but then I guess everyone is so different. Her only side effect has been the low counts. She always felt just fine during the week of her treatment and so on. Just a little more Info I found out recently about the drug. According the the fine folks in charge of my mom’s care in the decitibine study, they are finding that the few who do respond start showing leukemia return after about 12 cycles. Then again there are some going on thier 20th some cycle. Where we are at they are puting those people who stop responding on another study drug, an oral called Saha. Don’t have much more info but thought I’d share what I am hearing. As for my mom, her counts are still very low and neupogen does not seem to be doing much to raise her neutrophil. She is still very neutropenic. They gave her two week delay in the decitibine but is supposed to start again ( her 8th cycle, we think bone marrow is still clear ) this Wed..unless they don’t think she is up to it. Then I don’t know what. However she is home and feeling pretty ok.
Hope this works for your mom. I will be thinking about you both. I still think this drug has extendend my mom’s life by far…and still hopeful it will extend some more.
Kristy

[lucym]

Kristy,
I am so happy to hear your Mom is home, thanks for the info. Perhaps the diarreha is something else, not the chemo. I do hope this works for my Mom. How many people are in the study with your Mom? Do they all have MDS progressed to AML? Would you be able to give me the contact of the study I would like to ask alot of questions. My Mom is the first patient they are using the drug on. They have been using it in studies but I don’t think with anyone with AML only those with MDS. Thanks again for the post
Hoping this is the answer for a least a little while.
Lucy

[kristyk]

Lucy
Try finding the website for Siteman Cancer Center. I think that site does list all studies in progress and have contact info. The main Dr. for MDS and Leukemia is Dr. Dipersio. I want to say that he said that there are only two studies for AML/decitibine currently available in the world and I think the other is in germany. Not sure of # of people enrolled in st. Louis. and not sure how many are MDS transformed to AML patients. I see them tomorrow and will ask.
Good luck.
Kristy

[JaniceR]

My dad has the opposite side effect to decitabine. He is severely constipated. And the other side effect is he has restless leg syndrome. He keeps very busy and active all day so that he doesn’t notice it, but the second he sits down to rest, he notices he legs have this twitching feeling. Anyone know what he can do to alleviate that? His fingers are still numb (and annoying him) from the arsenic and ara-c he had in February. Any suggestions? Other than that, he’s doing well.

[lynette]

Hi Janice,
I’m glad to hear that your Dad is doing well. Regarding the RLS, there are several medications given for this disorder. REQUIP had recently been approved by the FDA for RLS. Other meds are given “off label” for RLS. I am not sure about any contraindications, but there might be options for him. Interestingly, one piece of research notes that RLS can correlate w/ anemia, and if the anemia resolves, the RLS improves.
Take care!
Lynette

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