Myelofibrosis and Momelotinib

[Richinspirit]

My husband has recently been diagnosed with Post Essential Thrombcythaemia Jack 2 negative Myelofibrosis. He was originally diagnosed with essential thrombcythaemia Jack 2 negative in 2009 - he is now an extremely healthy (apart from this of course) 81-year-old. When he was first diagnosed six months ago, it seemed that the preferred treatment was Ruxlitinib but his haematologist didn’t think he was ready to go on that at that time. He has now been told that Momelotinib is now available in the UK and is a better option. He now feels ready to go down this path. We are due to see his haematologist in two weeks time and though I’m getting together a list of questions we need to ask. I would really appreciate it if any of your wonderful people on this site have any knowledge or experience of this drug please. Also, if there is a better forum I could post this message on, would you please be kind enough to share with me please. Thanking you in advance.

[lizzziep]

I’m 71 with post ET MF, I have had several different drugs. I am currently on Momelotinib and hydroxycarbamide. Momelotinib gave my haemoglobin a boost, I’ve always been very anaemic, but increased my platelets, so I was prescribed hydroxy alongside it to bring them down. Hopefully I can be weaned off the hydroxy. I feel fine on the Momelotinib, haven’t had any particular side effects so far. However everyone is different.

I haven’t found any better forums than this and MPN voice for information.

[Richinspirit in reply to lizzziep]

Thank you soo much for taking the time to share your experience with me. Onwards and upwards.

[PT99]

Like Lizziep, I’m also post ET MF and on a combination of Momelotinib and Hydroxy which I’ve been on for a couple of months now. In that time my hemoglobin has risen from 98 to 122 as a result of the Momelotinib, so if your husband is in a similar position, it would be a good choice. I’ve had no side effects either.

I hope this helps.

[Richinspirit in reply to PT99]

Thank you so very much indeed for sharing what has happened to you - it sounds very similar to my husband. There is so little information out there about MF and up-to-date treatments as I’m sure you will agree. You have inspired us to go for it - so watch this space. Xx

[PT99]

That’s good. As far as I’m aware Momelotinib is the latest drug for MF, available in the UK.

Best wishes to you and your husband