← Return to What are treatments for myelofibrosis?

Discussion
vas73 avatar

What are treatments for myelofibrosis?

Blood Cancers & Disorders | Last Active: Apr 15 6:55am | Replies (133)

Comment receiving replies
Profile picture for samlupowitz @samlupowitz

@carolgk Good morning? Thank you for mentioning Vonjo. I will ask my oncologist about it. I have both Myelofibrosis and Erdheim Chester Disease and am on Cotellic from Genentech. It saved me. I had lost 50 pounds - went from around 188 down to 138. After taking Cotellic, immediately got back to around 170 (perfect weight) and most symptoms disappeared. Hope this info helps you. Also … had horrendous thoracic itching years ago. Low dosage Xanax immediately stops it. I take .25 mg Alprazolam (generic Xanax) at night. Zero itching. Maybe try that!

Jump to this post


Replies to "@carolgk Good morning? Thank you for mentioning Vonjo. I will ask my oncologist about it. I..."

@samlupowitz
Thanks for sharing this information.

Mayo Oncologist stated he specifically wanted me on Vonjo due to my advanced stage of MF, my blood work at the time and symptoms.
It may be that other medication will suit your disease.
Another factor is Vonjo is $26,000 per month. I am grateful our health Insurance covers most of the cost.

Wishing you the best.