Myelofibrosis

[Jerrymohler]

I have stage two MF. 72 years old. Live in California. They want to put me on JAKAFI. Anybody else out there in my situation?

[skipperL]

Yes, I am 80, a Londoner, and I have MF - I have been on Ruxolitinib ( Jakavi) for some time now - most of my symptoms have gone such as itching, night sweats etc, but I still need monthly transfusions for anaemia. I am very happy with the present regime as I am functioning better than before. You have nothing to worry about - Good luck.

SkipperL

[Cja1956]

I don’t have MF but I’ve been taking Jakafi regularly for about 8 months now for PV with very few side effects.

All the best, Cindy

[ccsial]

I'm almost 75 and have MF for 9 months after ET for 15 years. On Jakafi and doing OK until last week when blasts went from 1% to 4%. My doctor ordered an AML test and I should have results this week. I have the TP53 mutation which is the worst.

[Hidden]

Hi Jerry, I have MF and started Jakavi Ruxolitinib over 3 years ago. For me, it's been brilliant, I can't praise it enough as I felt like I had my life back within days of starting it. Hope you have a similar experience. Best wishes, Christine

[Leighcox85]

Hello iam 34 I was diagnosed with primary mf in 2009 I had a massive spleen started rux 3 years ago has reduced my spleen and all seems well at present good luck Hun for most of us rux is the way forward x

[lynda1ann in reply to Leighcox85]

Hi, have you put on weight with Ruxolitinib

I’ve been taking it now for 10wks hopefully I’ll start feeling better

[Leighcox85 in reply to lynda1ann]

Yes Hun I have it’s quite common a lot of us get a rash to like severe acne on gav

[Leighcox85 in reply to Leighcox85]

Sorry it sent before I had chance it occurs on face scalp and back I get really forgetful but as far as I know they are quite common side effects

[lynda1ann in reply to Leighcox85]

Thanks for your reply, take care x

[markokrist in reply to Leighcox85]

Hi!How big was your speen? My mom has MF,and after 8 years of Ruxo,looks like medicine isn`t working anymore,as spleen has grown to 24 cm, and she has huge pain because of the size of it.

Thanks, Kristina

[tracey13]

My husband has PV post MF stage 2 he started jakafi in February and it's really eased his fatigue a lot he feels a lot better.

He's 47 he was diagnosed at the age of 40 with PV but it changed to early stages of MF in November last year .

[Triumph2010]

Jerry, I am almost 72 and have been taking Jakafi for three years now for PV and have had no side affects from the drug. I am very happy with this treatment compared to the frequent blood draws I had to have before starting Jakafi. Hope this helps!