Rars-t

[ldonald]

Hi my mum has been been diagnosed with Refractory anemia with ring sideroblasts and thrombocytosis with jak 2 (RARS-T with JAK 2 she also has leukemic cells present in the marrow but doctor does not seem to worried about it.
She received a bone marrow transplant on December last year and it was unsuccessful. The doctor has now said that she is not suitable for a 2nd transplant.
Her spleen is now 6 times the original size and she receives blood every week which in result has lead to her feeling very fatigue.
The doctor has decide the next option is to try the JAK 2 inhibitor but as it is not licensesed this may take some time before it is issued
I write here to just get some understanding of the disease and if there are any other options out there?
Replies would be much appreciated

[Birgitta-A]

Hi Idonald,
Your mother has a type of MDS that is very uncommon.
http://www.ncbi.nlm.nih.gov/pubmed/21350094

Her spleen enlargement is maybe a symptom of the disease Myelofibrosis. Patients with Myelofibrosis can have positive effect when they are treated with the JAK2 inhibitor Jakafi, that is approved for Myelofibrosis. Hope the drug will help your mother.
Kind regards
Birgitta-A

[gramous]

my friend has also this type of mds.... for the high counts platelets, he takes hydrea (hydroxurée) and aspirin.... for the rest, it is watch and wait.... how long is your mum dx?
i think also that sideroblastic refractory anemia gives too hight ferritin (boyfriend at 1000 :-( ) )
take care,