Polycythemia Vera with myelofibrosis

[IK5555]

High risk patient completed 5 years on Hydrea currently on Jackavi. What is the prognosis?

[Aime]

Hi, because we are not medics on this forum, I don’t think I can answer your question but please ask your haematologist. You have a right to ask and know. Write down your questions before you go so you remember to ask them. Kindest regards Aime 😺😺

[katiewalsh in reply to Aime]

Hi. Sorry I misspelled your name Aime! Katie

[Aime in reply to katiewalsh]

No worries Katie.xx Aime😻😻

[katiewalsh]

Hi. Amy is right, this is a question only your specialist can answer. And it can depend on many genetic factors. Remember that if your doctor can’t be specific that’s because for most of us the answer is never clear. I’m sure the lack of certainty must be troublesome, I know at first it was for me. But try not to worry so much about what “might happen” that you lose sight of the joy you’re currently able to experience in life. With time & practice this becomes automatic. Btw, I was told 5 years ago that I probably had only 6-8 years left. That turns out to be totally wrong; my disease hasn’t progressed at all since then. Best wishes to you. Katie

[socrates_8]

Hey IK5555...

Sorry to learn you are having some apprehension, and unclear answers from your medical team one assumes...

I have a MPN friend (65yo), who also is PV/MF. He was just on Jakafi until recently, when he also tried Pegasys' Interferon for a short period. However, now he is back to just the Jakafi, plus loads of Curcumin... and he says he's feeling really well and receiving great Blood results too at the present...

Are you presently taking both HU & Ruxolitinib?

Aime is correct however, and we are all just well-meaning empathetic MPN patients ourselves...

Nevertheless, if you are unhappy with the level of clarity that you are presently receiving from your Specialist... Perhaps looking for another might also be an Option worth exploring...

Unlike here in sunny Sydney, Australia... You guys in the UK have access to much better MPN specialists than we do, unfortunately for us Ozzies...

Is your current doctor an MPN Specialist?

Very best wishes and I hope you find the answers you need soon...

Steve

[Cja1956]

I agree with the others. I had ET for 11 years and in September I was told by my new hematologist i had progressed to MF. She’s treating me much more aggressively than my previous hematologist and told me I’ll probably need a sct in the next 2-5 years. I’m having a consultation in 2 weeks. I have great confidence in her but I don’t think anyone can really predict our prognosis. By the way, I was on Jakafi, too, as well as hydrea. She just took me off the jakafi and put me on a brand new drug called Inrebic. I also get EPO injections once a week. Stay positive and keep us posted.