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MDS Myelodysplastic syndromes

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Old Mon May 20, 2013, 03:13 PM
MrHandy2013 MrHandy2013 is offline
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Join Date: May 2013
Location: Westchester,NY
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Questions, Questions, Questions!!

I was originally diagnosed with B Cell Lymphoma and AML. My blood counts at the time were WBC <3, RBC ~3.0 Platelets ~85. Blasts 5%. All during my Rituxan treatments, most of the counts stayed the same.
1 month after last Rituxan treatment had BMA and B Cell was at <1% , blasts were 7%. Wait and Watch, Counts still the same at 4 months but blasts at 11% BMA. Started Vidaza. After first course of subcutaneous injections, changed to IV due to severe reaction at injection sites. Extreme drop in Platelets. FRom average of 60-80, down to 12-15 and transfusions began every 10 days or so. WBC 1.2 . Neupogen between Vidaza courses. Always raised WBC but would not last. Platelet transfusion only shows good for a few days (>30). After 4 courses of Vidaza, BMA showed blasts down to 7%. Dr Stopped Vidaza and started me on Dacogen 5X week every 28 days. Just finished second course and had two units platelets Saturday and 2 units Red Saturday. CBC today show white @4.4 (Neupogen Saturday and Sunday), Red at 3.6 HBG 10.6 and platelets ~38.
I can only wonder if the Vidaza and Dacogen has made my condition worse.
I am supposed to have a Stem Cell Transplant. Brother is 10/10 DNA match but have had no word on viral testing and that was done 4 months ago.
Will have transplant by doctor other than my primary Oncologist/Hematologist.

Has anyone experienced anything like this and how did your doctors respond to this? I am so much sicker than when I started. During Rituxan , I could pretty much keep active(not as normal but active) Now , very little activity drags me down. Showering is about my limit. I just don't get it. My Doctors just say that this is part of the treatment. So confused.
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Old Mon May 20, 2013, 04:35 PM
sbk007 sbk007 is offline
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Join Date: Apr 2013
Location: NY
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Sorry your having a rough time of it. How many rounds/cycles of vidaza?.
I just completed my first round of vidaza yesterday. Its my understanding that both vidaza & dacogen initially will bring your counts down. I forget how long it takes to do that. My hematologist mentioned he may have to give me a shot of Neupogen before I even started the treatment, and I was told by 2 hematologists I might feel tired as such. Eventually the idea is to get the counts up and reduce the number of blasts. BTW, I lived in Chester for 15 years just up the road from you, then moved to rock county. Why the switch from vidaza to dacogen? if the vidaza was working(reducing the number of blasts) why is the switch to dacogen? If you are having an SCT the vidaza/dacogen treatment is meant to condition you for the SCT. The survival curves seem to favor those pretreated with a demethylizer before SCT(that's what I was told). I use a local heme/onc that sends me to another heme/onc at cornell/weill/Columbia Presbyterian, then they collaborate... that's where I get this info. Hope your feeling better and your counts return to where they should be. BTW - The onc @ Columbia told me they administer it subcutaneously were as my local onc suggested the IV was a lot more tolerable for the reason you mentioned and so I skipped the injections and went for IV.
All the best,
Steve
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Old Sun May 26, 2013, 08:35 PM
billyb billyb is offline
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Join Date: Nov 2012
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The switch in treatments could be due to the aml, just ask your doctor why he / she switched you, maybe they wernt seeing a fast or big enough improvement in the aml and felt decitabine would work better in your case, you have to remember what works for someone else might not nessessalry work good for you and vise versa, we look at certain things during treatment while our medical team looks at the whole picture and its a whole lot bigger than blood counts and blasts. What subtype of aml do you have ? Treatments will tear down the body in hopes to help rebuild down the road, not to mention the rountien of going to and from appointments ect..Stay Stong..... we are with you
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Billy - Husband of Tina: 31 years old at dx - June 2007 - Stage 3 Breast Cancer - Dec 2008 Stage 4 - Brain and Bone - Nov 2012 - Therapy Related AML. Curently on Decitabine for Therapy Related AML and Herceptain for ongoing Breast Cancer. Weekly transfussions of blood and platelets
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