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

nobody with this disease :eek: ?
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

up
I hoop someone with this form MDS will respond a day :-)
good day at everyone

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.

thank you Cherryl, I read also all your post for years :-)
take care, béné

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

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

hi Patty, how are you? what are your results? béné