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MDS Myelodysplastic syndromes

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  #1  
Old Fri Oct 27, 2017, 01:45 PM
PattyGal PattyGal is offline
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Join Date: May 2016
Location: Florida
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MDS / RARS w/SF3B1 mutation

I was diagnosed in July 2015 after some years of anemia and fatigue. Diagnosis indicates my condition will not progress. WBC, RBC, ANC, Hgb and other factors have always been low. Have had transfusions every 6 to 8 weeks. Was on Procrit for a few weeks. It did not work. Started Vidaza which has not been effective in keeping my numbers up. Have now ceased Vidaza and been referred to Shands for second opinion. Also, ceased Vidaza last year for 2 months to enter clinical trial which was not effective. I am very curious about others experience with RARS diagnosis.
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Dx w/MDS-RARS 07/15. Treated w/Procrit & Vidaza. Neither worked. Now in clinical trial taking INCB053914.
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Old Thu Dec 14, 2017, 10:36 AM
allank allank is offline
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Join Date: Dec 2017
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Patty,
I was diagnosed with RARS after having a routine physical in april 2017. I had low blood counts and was referred to a hemotologist. He couldn't see any reason for the low counts (hemoglobin 11, platelets 75,000 and wbc was a little low) so he sent me for a BMB which confirmed the RARS diagnosis. I have been on watch and wait with my last visit in October. All my counts have increased since the blood work done in april and in oct platelets were over 150, hemoglobin 12 and wbc was ok, so he has me scheduled to come back in January. I have felt pretty normal, some fatigue but not much else. That has been my experience so far, it seems this disease is all over the map in symtoms and effect on everyone, there is no "normal". I hope you are still doing well. I will post again after my next checkup.
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Old Tue Jan 2, 2018, 01:54 PM
gramous gramous is offline
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Join Date: Apr 2012
Location: belgium
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Hi Patty, my partner was diagnosed with RARS-T in januari 2011 and had that for sure since 2009 (low blood results but no conformition from a bmb). He's now on Watch and wait since 7 years and doing good. He has had 4 unit blood the last five years. his hemo is between 7,5 and 10... so no experience with medecine. RARS is a subtype where the patient are frequent on Watch and wait. Viddazza doesn't work for this type of patient. Some has good result with dacogen of revlimid. kind regards, béné
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boyfriend with RARS-T dx 11/02//dx : hb 11,5; plt 870000, wh : 6500//Before fasting cure (13/04): hb: 8,9; plt 2200000; white:6000//After fasting cure (14/09): hb 12,5; platelets 400000, wh 3000.//Now (15/08) : hb : 11,plt : 650000, wh 3000// hydrea 1c/day and cardioaspirin, 1c/day,age: 56 y.
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