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

CLL Support

23,339 members40,047 posts

Jakafi

virdieblue profile image
3 Replies

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

Written by
virdieblue profile image
virdieblue
To view profiles and participate in discussions please or .
Read more about...
3 Replies
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 tosrifkin

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

Not what you're looking for?

You may also like...

Hair Loss with Acalabrutinib

I have been taking this drug since March of this year and in the past month my hair has started to...

NCBI Journal - Cannabis Extract Treatment for Terminal Acute Lymphoblastic Leukemia with a Philadelphia Chromosome Mutation

Hi, I am new here and I stumbled across this site whilst researching and thought this information...
Khenet profile image

sinus infection and nose bleeds.

Hi everyone,I live in the UK and have no support whatsoever for my CLL,the DR at the hospital took...

CLL - Next Generation Sequencing

I'm curious about Next Generation Sequencing for CLL. To my understanding, this type of test...
Cave123 profile image

UK Zoom meeting - COVID-19 and shielding update for UK CLL Patients

ZOOM invite details below May 7, 2020, 10:00 AM - Webinar - COVID-19 and shielding update for CLL...
Jm954 profile image
Administrator

Moderation team

See all
CLLerinOz profile image
CLLerinOzAdministrator
AussieNeil profile image
AussieNeilAdministrator
Newdawn profile image
NewdawnAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.