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MDS Myelodysplastic syndromes

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Old Tue Apr 9, 2019, 03:40 PM
HappySoul3 HappySoul3 is offline
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Anyone take vidaza before stem cell transplant?

Hello,
I am new here. I have hypoplastic mds and am awaiting a stem cell transplant. In the meantime I will be starting vidaza for at least 3 cycles while we look for a donor. I am 53 and wondering what others have experienced on this treatment? Just wondering what I have to look forward to.
Thanks.
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Old Tue Apr 9, 2019, 03:51 PM
DanL DanL is offline
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I have seen a good number of members that have had vidaza as a bridge to transplant therapy, and had it myself prior to transplant.

Vidaza is a fairly mild treatment for most people, but does have side effects, it reduced blood counts for part of the month until your system recovers, which may make you susceptible to infection, bleeding, or anemia. It causes constipation for some, diarrhea for others, along with nausea for some. My advice is to talk to the doctor about the side effects and anything that is happening to you during treatment that is out of the ordinary, no matter how small. Also, be sure to accept anti-nausea meds when offered. It is much easier to take them up front than it is to try and fight back nausea after it has hit you.

Lastly, there are studies that show that bridge therapy may be helpful to transplant by "chemosensitizing" your marrow for the drugs that you will receive to destroy the marrow and defective cells prior to transplant.

Hope this helps, and good luck with the donor search.

Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD.
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Old Wed Apr 10, 2019, 02:05 AM
Hopeful Hopeful is offline
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Quote:
Originally Posted by HappySoul3 View Post
Hello,
I am new here. I have hypoplastic mds and am awaiting a stem cell transplant. In the meantime I will be starting vidaza for at least 3 cycles while we look for a donor. I am 53 and wondering what others have experienced on this treatment? Just wondering what I have to look forward to.
Thanks.

Hello HappySoul3,

I really like your name
Have you doctorsí considered immune suppressive therapy (ATG) ?
Is there something that puts you firmly in the MDS camp vs AA?

Of course, if you have already started Vidaza you can disregard my question.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Wed Apr 10, 2019, 04:08 PM
HappySoul3 HappySoul3 is offline
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Smile Thank you

Thank you both for your responses.

Re Hopeful's question. My diagnosis has been confirmed as Hypoplastic MDS not AA. I am starting Vidaza shortly. Just waiting for the approval for funding.

I have very high-risk MDS and getting regular transfusions of RBC's and my platelets are approaching transfusion level now as well.

I have just come from my hematologist's office this morning. I got copies of all the reports to date as I am trying to keep track of everything since I will be going back and forth between the transplant hospital some five hours away and my local hematologist and hospital here.

Thanks again.
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53 years old. Hypoplastic MDS, on Vidaza awaiting transplant.
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  #5  
Old Fri Apr 12, 2019, 10:41 PM
Emily59 Emily59 is offline
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I had 3 rounds of Vidaza to prep for a SCT. However my blasts were still too high - from 15% to 10% (to my best recall). They gave me 2 more rounds and blasts dropped to 5%. Then I had the transplant.

I had some nasty nausea starting 3 hours after my first injection. With nausea meds it became tolerable. I worked most days during treatment since I was out of sick days. No fun was had. The anti-nausea meds induced constipation - so be prepared. My schedule for Vidaza was 5+2. After a couple days following treatment the nausea ended. Then I was just fatigued for another week. It wasn't the best months of my life, but it was very worth it in order to get the transplant.
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Diagnosed with MDS-EB2 December 2017. Stem cell transplant completed August 2018.
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