Jakafi: This is being tested at MD Anderson to... - CLL Support

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Jakafi

virdieblue profile image
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This is being tested at MD Anderson to be used to alleviate CLL symptoms like fatigue and enlarged nodes. Results in 2018.

Me and my football players neck would love this. Has any ever tries this?

Virginia

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virdieblue
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Cllcanada profile image
CllcanadaTop Poster CURE Hero

Dr. Spaner at Sunnybrook Hospital, in Toronto, has done early work on this in CLL, looking at dosing and side effects here is his prelininary paper. Anemia and thrombocytopenia where common, but dose cycles can reduce this...

haematologica.org/content/h...

It is extraordinary expensive, I believe more than ibrutinib, so I don't see how it would be used only for fatigue...

srifkin profile image
srifkin

I had a Bone Marrow Transplant about 1 year ago and was given Jakafi for  steroid resistant chronic Graft vs Host Disease.  It is an off label use, but has been very effective for me.  The BMT was for a condition which developed after I was treated for CLL by FCR about 10 years ago.  The new problem, MDS, Myelodysplastic Syndrome (which will turn into AML) was discovered when the CLL came back after about 10 years. I was treated with Imbruvica, but my platelets did not recover.  Testing showed the new problem came from the previous FCR Therapy.  Since I am now 67, I decided on the BMT to "cure" the MDS and maybe even the CLL.

virdieblue profile image
virdieblue in reply to srifkin

You have been through the wars! I'll be interested to hear more about this drug as the study progresses.