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Hello and thank you for allowing me to join. I was diagnosed with MF on the 21st of May this year so I am still in the early stages of it sinking in!

I am 53 (tomorrow) and came across diagnosis by accident. I went to my doctors in February experiencing stomach pains and vomiting along with chest wind pains. I was given blood tests and sent off for an ultrasound. The ultrasound confirmed gallstones but my bloods along with showing infection had a high platelet count of 872. I thought nothing of the platelets and was referred to a surgeon for gallbladder removal. Whilst waiting for the surgeons appointment I received a letter to attend a haematologist appointment at Worcester hospital. At this point I became a little concerned and started googling high platelets causes and read then about MPN. Some of the symptoms I have had over the last few years became apparent that something was amiss! I saw the haemo understudy and suggested that the platelets were probably caused by my gallbladder issues. The results of my bloods tests for mutation had not returned and she made an appointment for me for 6 weeks later.

I guess at that point I was a little concerned.

A few days later an appointment came for a bone marrow biopsy and then I was very concerned!

I joined Facebook MPN groups and decided pretty much that if anything I had ET and thought that an aspirin a day would keep me going for years to come.

I saw the main haemo at the next appointment and could have fallen off the chair when he told me I had MF. I had not considered this as an option. It has taken a while to sink in and I have a follow up appointment this morning to discuss treatment plan. I will of course let you know how this goes.

Regards

Graham

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Graham

Make sure you ask what stage you are at and whether you are pre PMF (a grey area somewhere between ET and PMF) and, if now actual MF, are you secondary MF (ie post ET) or PMF (ie always been MF).

If only your Platelets are raised and other bloods good, then hopefully you are very early stage. See recent threads on early stage MF and pre PMF. Prognosis should be reasonably good, especially in view of your age. As my Hem recently said, I may never need a SCT since new drugs in the pipeline. Just need to hold out for say five years or so. Prognosis for pre MF similar to PV

I’d also ask if are you JAK2 +ve, if yes what % mutant JAK2.

And ask if you are CALR or MPL.

Worst case and you are more advanced and might need SCT within next few years, ask about genetic profiling, testing for mutations such as ASXL1, which will help decide timing.

Good luck and best wishes Paul

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Morning Paul

Diagnosis is Primary Myelofibrosis (hypercellular stage)

I will ask in the Jak2 and Calr at today’s appointment. The bloods were sent away nearly 2 months ago

Regards

Graham

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Graham - so that’s early stage isn’t it (pardon my ignorance)? I’m not sure what the difference is between pre PMF and PMF re BMB results. I assumed hypercellular stage was pre fibrotic.

Good luck again re your consultation, hope it goes well. I think in general CALR is a good mutation to have. Best Paul

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Ok so here is the latest. I had my consultation this morning. The jak2 and calr results are still not back so he is chasing them but says it makes no difference as the bmb is conclusive. Treatment is as follows - 75mg aspirin daily, 300mg allopurinol daily, 20mg Ruxolitinib twice daily. Another appointment in 4 weeks and obviously blood tests to monitor

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Hello Graham

I’m sorry to hear about your MF. Paul has obviously been helpful in his reply. Were you told at your consultation what risk group you fall into?

I can understand the shock. I had ET for about 10 years until it progressed to MF last year - I am now 55. I am also on aspirin and Rux and have to say I feel absolutely fine. Do you have an enlarged spleen? I imagine so - if you’ve been prescribed Rux. It works pretty quickly.

Wishing you well, Graham. Please let us know how you are.

Best wishes

Paula

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Hi Paula. My spleen is not enlarged and I am catergised as low risk with symptoms. My haemo spoke about Ruxolitinib at the first meeting and suggested that would be the best course of action but would need to check that I was elidgable for it as it was normally for intermediate 2 or high risk. I am guessing that I am lucky to have a good haematologist!

I am to start the allopurinol and aspirin and then start in a few days on the ruxolitinib. Hopefully I will be like a spring chicken in not time......

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Hi Graham,

SNAP!... I too was actually diagnosed on 21st May for MF from the BMB results. I understand what you must be going through, it's not the kind of news you want to hear at any time. I am JAK2 V617F allele burden 44%. Negative for all other mutations at present.

I'm 45 so a couple of years younger than you and this time last year I was racing around on my CX bike, cycling 100+ miles to work and back. I thought I was fitter than I had been for years then bang! I got quite ill all of a sudden. It sounds like your Haem is putting you on quite a lot for Low risk, though I have to say I don't know much about the term hypercellular stage.

I am to start HU in about 3 weeks time to try and reduce the spleen as that's the only real noticeable symptom I have a the minute thank god. I was told that Ruxo was only available to intermediate 2 - high risk in the UK. I'm mostly researching at the minute to try and figure out what would be the best option before I next see my Heam. My Blood is fairly normal at present.

I hope your next appointment with goes well and you respond well to the treatment when you start.

All the best for now

Barry

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If SCT (Stem Cell Transplant), the only potential cure, is in your future then I am here to help. I had mine seven years ago. It is interesting that rux’ is only available for IR2/high risk MFers as that is also the stage when SCT is considered.

Chris

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Well I am guessing things are changing as I am low risk with symptoms and the letter to my GP says I am eligible for Rux. I picked up my first months supply yesterday. I wouldn’t want to be rocking the boat as I am pleased to be having it! My haemo says it is the best treatment for me as it targets the symptoms. Reading through all the Jakavi folders it says to treat PV, ET and MF.

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Hello Graham, you seem to have had lots of good technical advice and information and your medical support team sound right on the ball. I was diagnosised a year ago with MF. It was recommended that I see a professional to talk to during my earlier appointments. I didn’t, and then spent nine months trying to cope with anxiety, thinking I didn’t need to talk to someone. I was so wrong. I have a strong Christian faith and still I suffered. First I was in shock, then I was in denial and then I was just plain scared. Ask, seek and find someone who is trained to talk to. I wish you all the very best. Jan

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