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#1
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What % of patients does Vidaza work ???
Hi everybody ....
After 3 cycles of Vidaza, my Dr. is in a wait and see mode to see if my red cells come back, and other factors as well. I thought that it took at least 4 treatments to determine if anything is turning around...... now, I do know we're all different ....I am having transfusions every 2 weeks . Thoughts ?? |
#2
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Ann,
These are great questions. A lot of the research that has been presented suggests that most patients benefit from trying up to 6 cycles of Vidaza before giving up and moving to another treatment mode. One of the common side-effects of Vidaza, ironically, is marrow-suppression, meaning that it can lower counts before they recover. If you read the posts here, it seems that treatment delay is a pretty common occurence with any of the MDS drugs. A recent study suggests that one of the key measures of whether a patient will be a good responder is platelet count after the first cycle. If you have low platelets and the counts double or better after the first cycle, a continuation of treatment might be in order. Did you experience this? As for the percentage of responders. The numbers are all over the board, and most data has been collected on Intermediate-2 and High Risk MDS. The studies usually put response rates into the categories of: Complete Response (CR), Marrow Complete Response (CRm), Partial Response, Hematological Improvement (HI) Stable Disease (SD), and non-responder (NR). A recent study in Italy tested low-risk MDS patients and had a 61% overall response rate with 22% in complete remission, and 39% with some hematological improvement: http://www.mdsbeacon.com/news/2011/0...ents-eha-2011/ This older study is a little lengthy, but basically shows about 50-60% response rate. An important part here is that a complete response or remission is not always required to see benefit. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1936359/ The short answer is that Vidaza only offers CR about 10% of the time, partial response about 20% of the time, and Hematological improvement aobut 30% of the time. (these are all my round numbers from scanning articles and journals) I hope this helps.
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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. Neuropathy over 80% of body. |
#3
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Wow, Dan ...... so impressed with your knowledge of all of this.... thanks so much for your detailed response, and especially the links. I'm still a bit 'new' at this stuff and am trying to get up to speed as quickly as possible. Again , thanks for the info ...... not sure about platelet count after the first treatment, but will try to look it up .....
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#4
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Ann,
I just had my third round of Vidaza. My third round was set back two weeks due to very low counts. My counts started coming up after the two week pause and then I got the third round. Now my counts are terrible again. I'm getting two units of blood every two weeks, sometimes sooner. I hoping for a stem cell transplant early next year. I want to go ahead with the sct before I start having other health issues from chemo and iron overload. Are you getting Vidaza subcue or IV? Good Luck, Scott L. |
#5
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Scott....
Doing the sub-cue.....really not that bad.... you ???? Here's hoping that your numbers will improve VERY soon !!! Ann |
#6
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Hi All,
Just want to say, my status mirrors Scott's as does my philosophy. My one question is: with a community hemotologist and a transplant dr., should I still try and locate an MDS specialist? Does this dr. need to be associated with the hospital I will receive the the sct at? thanks for all the support and information. Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin. |
#7
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Vidaza and low risk MDS
Hi Annm,
They have now found a gene called WT1 on chromosome 11p that perhaps can indicate if we will respond to Vidaza. If this gene is methylated (if there is an extra methyl group at the DNA) we won't belong to the patients who respond. These results have to be confirmed before we are sure that it really is true. Here is an abstract where they report that low risk MDS patients who need many blood txs and don't respond to EPO don't respond so well when they are treated with Vidaza. As you can see the study still is very small. Then they have only reported transfusion independence. The patients can have had other types of hematologic improvements: http://ash.confex.com/ash/2011/webpr...aper38568.html Kind regards Birgitta-A |
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