Hello this is Angela, hope everyone is doing the best they can with their health.

[IlGod67]

I wonder if anyone who has Myelofibrosis without the JAK2 mutation tried the drug JAKAFI?

[JediReject]

Hello llGod67, , , , sure there will be but just to say if it works for you doesn't seem to matter if you're Jak2 or not. . . In fact I'm unsure of the overall significance of the Jak mutation in terms of treatment. . Good luck .

[Jane65]

Hi, yes I have post ET Mf and i have the CALR gene mutation. I have taken Jakafi since late July last year. Symptom wise I am in a really good place. I have settled now into a 2 x 20 mg pattern and I am careful to try a do take each dose as near to 12 hours apart as I can. If I am late with a dose, my bone pain increases and it alerts me to being late. When I started I was feeling really ill with constant pain and sweats, night and day, huge spleen. Now my pain is under control, my sweats are greatly reduced and I can sleep better. However, it has left me with falling counts and I am transfusions peen dent having two bags every three to four weeks. .

Very best wishes with your decision. All I can say is that I could continue with my life as I feel now. I couldn't before

Xx

[crapaud]

Hello IlGod67,

I had MF ( plus MDS-U) but without the JAK2 mutation nor any other identifiable mutation.

After 10 months treatment with Pegasys I had to put stop to my treatment since I had decided to follow the advice of my consultant and undertake a SCT; two months later I was in a very, very bad state and my MPN consultant prescribed me JAKAFI (Ruxolitinib). She assured me that although I did not fulfill the normal criteria to be proposed this drug (JAK2 +ve and spleen enlargement) there could be benefits all the same to use it. It so happens that it did not work out for me, but as you can see from my consultant's attitude it can be used by JAK2 -ve patients.

Good luck in your choice and the longer term treatment of your disorder.

Gary

[beetle]

From what I have read it was something of a surprise to the researchers that a drug targeting the jak2 mutation also seemed to be effective in some people who do not have the mutation. Likewise it is not effective in all who have the mutation. I think MPNs are becoming better and better understood but maybe they have some more surprises for us all yet! Good luck with your choice of treatment. I am taking Jakafi but to be quite honest I am waiting anxiously for the next drug to come along. Imetelstat sounds very interesting.