MF

[Bobbyrun262]

Had PV and now MF. Anybody else have the same?

[billybrock]

Hi Bobbyrun262

I was diagnosed with PV and was on Hydroxycarbomide for about 12 months, then transgressed to MF just over 16 months ago. I am 79 and have been on Ruxolitinib. Apart from an enlarged spleen, I am lucky to not have any other of the MF symptoms. No fatigue, itching, night sweats , etc. My blood counts are steady with a few slightly outside the normal range. But nothing to worry about. However, everybody reacts differently to MF, so you may find have a different experience.

Just do as the consultant tells you and you should be fine.

Wishing you well!

Billybrock

[Dodders]

I transitioned from PV to MF in early2017 after 12+ years with PV. For me I would say the single most important consideration was to be immediately referred by my local haematologist to one of her colleagues who had greater experience and knowledge with MF. It seems that MF and its symptoms can vary a lot from patient to patient. In my case the fibrosis advanced fairly rapidly. Ruxolitinib (Jakavi) helped for a few months but as I became more and more dependent on transfusions and the other symptoms worsened I was eventually able to have a stem cell transplant. As I say MF varies a lot in how it manifests and you may well remain stable, and with a good quality of life with the right medication. You don't say how diagnosis was confirmed but if you have not had a bone marrow aspiration then you should probably have one as this can set a benchmark for the degree of fibrosis that you have at present. Above all though, get to see the most expert haematologist that you can. All the best.

[Glasskayak1]

Hi Bobby, I was diagnosed in late 2010 with PV at 60 years old that quickly progressed to ET and was on hydroxy for 4 and a half years when a blood test showed a change. At that time I had a bone marrow biopsy which showed extensive fibrosis from MF. After that I was put on Jakafi, almost 5 years ago and have been stable with very little impact on my life. My spleen and liver are within high normal range and have never been a problem. Every one is different but stay active, eat well and don’t let the diagnosis stop you from doing all you did before.

[tracey13]

My husband had PV diagnosed at 40 two years ago it had changed to MF his spleen was almost double in size he had terrible exhaustion and fatigue .

He started on ruxolitanib a year gone January his spleen is almost back in range size .

He feels loads better in himself no exhaustion or fatigue now.

He is doing amazing he's not no symptoms at all.

Tracey

[TrickyDicky]

Hi. I was diagnosed with ET in 2008 at 36. A few years later I started venesections to keep my haematacrit in range and that’s continued since. Apparently this is consistent with Pv not ET. My platelets have been stable up until the last 12 months when they’ve started to climb a little. I’ve been fortunate to have been well otherwise. Because of the climb in platelets and concerns about the contradictory indications the consultant at my local hospital is recommending a bone marrow biopsy, suggesting it could be MF. I’m having the biopsy done tomorrow.