Hi there, new to the group so thought i would introduce myself.
I had PV diagnosed in 2009 but mutated to MF confirmed in April 2021, on Jakavi to reduce my massive splenomegaly and doing well. Hoping for a SCT in the New Year. I’m just turned 59, healthy and pretty fit other than the MF and associated anaemia.
Welcome! You will find there are huge amounts of support here.My situation is similar to yours - I am 60 and progressed from ET to MF last year, and also feel great on Ruxolitinib. I too am going through the various tests to prepare for an SCT, probably early next year.
Very best wishes to you, Jennie
Hi HitchcOtt5, welcome to the forum. We’re a friendly supportive bunch, glad you found us.
Good to hear that you’re responding to the rux. Seems to be a few members preparing for a SCT, so you’ll get plenty of understanding and support.
Welcome to the forum. Glad you found your way here. Please stay in touch as your jouney unfolds.
Welcome. I was in a similar position 11 years ago aged 57 but IR2 and primary Myelofibrosis. Had my SCT in UCH London using a MUD (matched unrelated donor) a few months later, so now over10 years out. You will get good support here as several have completed their SCT and there are some in the exploratory stage. Happy to help , chat and answer any questions. Can also share my story from diagnosis to a few months out; it’s online.
It is useful to share the area in which you are based and hospital as not all are the same. My second ever SCT contact lived 1.5 miles away in Watford and we were both treated in the excellent UCH. We buddied each other through it, me first and him a year later.
Chris H (there is another SCT Chris here he is aka Jedireject)
Thank you all for your welcome greetings - its good to know that there is support here. Just so you know my MF was diagnosed at Hereford Hospital and I was referred to the QE in Birmingham where I have Dr Raghavan as my Haematologist and will be under Prof Charlie Craddock for my SCT as and when that happens.
Welome Hitchc0u5. Welcome to the site, i'm also under Dr Ragavan at the QE in Birmingham and have certainly heard of the work of Professor Craddock. I Wish you all the best on your journey.Please keep us updated. Tina.☺
Hi Tina, I must say that I have been impressed with Dr Raghavan. Wider communication is not ideal but I’ve come to expect that.
I could do with an update on the progress or otherwise in looking for a donor and will contact the support nurse team tomorrow push for an update.
I’m looking forward to meeting the transplant team which I believe is next for me.
David
hello Hitchc and welcome to our forum, I can see that you have had some lovely replies already so will just say, hello and glad that you have found us, and we are all here to help and support you. Best wishes, Maz
A massive welcome, have you only just become familiar with this site? So glad you are doing well and I pray you get a match soon
Welcome here. We are a friendly supportive bunch here and some of us have trodden your road already. As for the rest of us we will offer any support and encouragement along the way. Best wishes, Jan
Hi Hitch,Like you, I am new to the forum. I am JAK2+ve, diagnosed with ET in 2003 and today was told it has progressed to PV. Am worried. Doc in ER prescribed Hydrea for a week and then repeat test. I have decided not to take Hydrea till my hematologist returns from her vacation next week. Have been taking a baby aspirin since 2003
What med are you taking, if any?
Am glad I found this forum
For the 11 years that I had PV I only took the baby aspirin and managed my haematocrit levels by venesection. I was fortunate that although I had slightly elevated WBC it was never out of hand and for me it was all about Haematocrit (which was .72 when diagnosed!!
I did try hydroxyurea for a short while but had some weird reactions so agreed with my haematologist to stop it.
Now I am prefibrotic MF and my haematocrit is below .3 because I am on jakavi to address my splenomegaly.
For me PV was nothing to be worried about except that it has turned to MF which is altogether more challenging.
Stay positive, work with your haematologist and good luck
Hi , welcome to the group sorry to hear about your diagnosis.
My husband started off with PV had this about 5.5 years then he had a BMB which showed primary myleofibrosis .
He's on ruxolitanib and it's been a life changer for him he's now 49 . He has been on ruxolitanib for two years now it's reduced his spleen and brought all his bloods back into normal range. He has no fatigue now which is great.
Good luck with your SCT .
Spleen - normal size varies by height of the person
New Drug may be relevant to MF, ET
pre MF what to expect 
Ruxo for mf cost? Nhs?
