Anyone tried Jakafi for T-cell large granular lymphocytic leukemia?

Posted by nzalman @nzalman, Aug 8 5:47pm

Has anyone tried Jakafi for T-LGL?

I am a geriatric patient in Canada, where little is known about this disease. I have tried Methotrexate and Cyclophosphate with no results and have been told Jakafi might help reduce the spleen, improve the neutrophils, and slow down the disease process in the blood marrow.

What is your experience with Jakafi, and what is your approximate age?

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Colleen Young, Connect Director | @colleenyoung | Aug 21 3:24pm

See related discussion:
- Looking for information about T cell large granulocytic leukemia https://connect.mayoclinic.org/discussion/t-cell-large-granulocytic-leukemia/

@nzalman, did you decide to start Jakafi for T-cell large granular lymphocytic leukemia? Are you being treated at a major cancer centre?

nzalman | @nzalman | Aug 22 3:03pm

Hi, Colleen.

No, I have not started Jakafi. The only treatment I'm now taking is Pegfilgrastin injectiions weekly. Methotrexate and Cyclophosphamine have been tried and rejected.

I am being treated at a general regional hospital where the haematologist has only a few LGL patients. But we have had a consultation with the Princess Margaret Hospital, the major cancer centre in Toronto.

I'm waiting for a reply from the U. of Virginia on my case.

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