Momelotinib for Myelofibrosis

[Cazbolac]

Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively managing my MF. My platelets and Hb are low and my spleen has enlarged again. My consultant is trying to get me approved for Momelotinib. She has no real literature about the drug, only a side effects sheet to send me. If I say I still want to try the drug, she will set things in motion. She has also asked me to consider stem cell transplant. I wonder if there is anyone on the forum who has been approved for Momelotinib and, if so, how it is working. Any info would be appreciated as it is a difficult time for me right now.

[hunter5582]

Momelotinib is the most recently approved JAK inhibitor with a specific indication for MF with anemia. It is a very hopeful step forward for those with MF/anemia. There are a few people on the frum who participated in clinical trials who can speak to their experience with it.

Here is a bit of information about momelotinib that you may find helpful.

cancernetwork.com/view/mome...

onclive.com/view/momelotini...

epocrates.com/online/drugs/...

drugs.com/monograph/momelot...

[Scaredy_cat]

Deciding on a stem cell transplant is a difficult job but worthwhile considering especially as you are relatively young. It is risky but a potential cure whereas the drugs help with symptoms and maybe give you extra time. I found the decision making really hard. Read some of my posts from 2 years ago

[BlackCatMan]

Ruxolitinib did not combat my MF so I started on Momelotinib in July last year. So far it has drastically slowed the decline in my Hgb and platelets. Both are still low but they have now stabilised. My spleen is still enlarged. I am waiting for a scan to see if it has reduced at all.

I started on Momelotinib at a dose of 100mg per day. It has been increased to 150mg per day and there is scope to increase to 200mg per day. I have suffered none of the side effects. So far it has been a complete success for me.

I am also thinking about Stem Cell Transplant but there are complications with my liver which mean the risks are significant. Momelotinib has given me more time to think about when to go for the transplant and will hopefully give me a few years yet before the transplant becomes the only option.

[Cazbolac in reply to BlackCatMan]

Thank you. That is helpful.

[Bainbridge]

Hi my husband has high risk MF and was on RUX 20MG per day. His is anemic from RUX the Dr did put him on Ojjarra for almost a month but he had very bad side effects, bone pain , spleen got enlarged so they took him off and put him back on RUX with a clinical trial of disc 0974 which seems to help with his numbers but does require a blood transfusion about every 30 days. Everyone reacts differently to it and clearly in his case we were hoping it would help with his anemic condition but he could not tolerate the new drug . He did consider Stem cell but there is no 10/10 match/donor plus he is 74 years old

[Cazbolac in reply to Bainbridge]

I appreciate your reply. I wish your husband well.

[Bullace]

I have no useful advice to offer but I do wish you well in your decision-making. It is so hard but at least there are some options for you. Hilary

[Cazbolac in reply to Bullace]

Thank you.