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#1
Thu Aug 20, 2015, 09:47 AM
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Rars-t
Hello,
Who has on the forum RARS-T (refractory anemia with sideroblast and thrombocytosis)? In summary : too much platelets and not enough red blood cell. My boyfriend has this disease since 2011 and I need to speak with other people who have the same. What are your lab results, are you jak2 positive?, how does your doctor the management of your disease (transfusion, iron chelation, cytoreductive treayment as hydroxyurea?). We feel alone because anyone has this form of the disease (0,004% of myelodysplastic syndrom I think). Thank you, 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. Last edited by gramous : Thu Aug 20, 2015 at 10:53 AM. 
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#2
Wed Aug 26, 2015, 04:35 AM
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nobody with this disease
 ? Last results (25 augustus) : hb : 10,1 ; pl: 650000; white 3000.... I need to speak with other people with this subtype (of eventually RARS) for the management in other of the ferritine (too high in the RARS and RARS-T disease without tranfusions). Thank you. 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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#3
Sat Sep 12, 2015, 05:41 AM
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up
I hoop someone with this form MDS will respond a day :-) good day at everyone
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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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#4
Sat Sep 12, 2015, 08:10 PM
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Just wanted you to know that I'm reading your posts bene, but as you can see I don't have RARS-T. I hope you find someone with the same type of MDS to converse with.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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#5
Sun Sep 13, 2015, 04:53 AM
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thank you Cherryl, I read also all your post for years :-)
take care, 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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#6
Tue Sep 29, 2015, 11:55 PM
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RARS-T with Myeloproliferative/Myelodysplastic Overlap Syndrome
Hello Gramous. I was diagnosed with RARS-T with Meyloproliferative/Meylodysplastic Overlap Syndrome last week. I am 48 years old. I am still awaiting more information on my bone marrow biopsy which I will have on October 15th. How is your boyfriend doing and how is he managing his disease?
Warm wishes, Patty
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#7
Thu Oct 15, 2015, 10:01 AM
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hi Patty,
He's more proliferative that myelodisplastic with jak 2 mutation and normal chromosomal.... The platelets were 2300000 in 2013 :-(. So He takes hydrea and cardioaspirin daily for the platelets management (1caps a day) and he is currently around 600000 platelets. He's transfusion independant (only a transfusion in 2011) and his hemo is around 10,5-11.... His white are a little bit too low (but due to hydrea).... He is in good physics condition and is doing well since 2011 (but the disease was already there in 2009).... We take care for our food, our physical condition, our rythm of life,... HAve you the definitive results? 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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#8
Fri Nov 6, 2015, 05:33 AM
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hi Patty, how are you? what are your results? 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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