MF

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I was called up for just a routine health check by my GP surgery for my 50th Birthday. Oh what a Birthday present I got.....I had a para protein in my blood so was sent for further blood tests. I then had a phone call to see a haematologist in my local hospital. Off I went with hubby in tow just thinking I might need iron tablets or something. How wrong were we. I sat down and was told straight out that I had bone marrow cancer called Myeloma. Well you could knock me down with a feather. I just didn’t know what to think! I was booked in to have a bone marrow biopsy to see how things were. What a horrible experience that was, no-one can ever explain the pain etc.

Well moving swiftly on, I was signed up to a myeloma study, so was sent off for a full MRI scan. Back into the haematologist I go for the results. Good news my myeloma isn’t as bad as previously thought, it was down graded to MGUS (don’t ask me what it means as I can’t remember ). Next lot of bad news, I was then diagnosed with myelofibrosis MF. Oh what a joy it was being told it’s incurable like myeloma but more aggressive, rare and to have the two is even more of a problem. Great!!

Moving forward 4 years, many blood tests, medications, hospital visits, hospital stays and shielding I’m still going. I was given 3 to 5 years going on the little data the powers that be have. My family are great, always there for appointments etc and offer support when and wherever I need it. I know this next bit is going to sound a bit ungrateful but I think they are becoming a tad complacent as I’ve been pretty well for the last 12 months. The only thing is I just don’t tell them when I don’t feel good. Perhaps I should.

I also want a family holiday next year (setting goals) but with the financial ties everyone has it will be a long shot. I just get very down when my boys go off on family holidays with in-laws and nit me .

well that’s my story and if you’ve got this far WELL DONE and THANK YOU for reading it.

Naugus over 1 year ago

Hello Liefie,

Sorry to hear that you have MF it is hard to come to terms with. I was diagnosed two years ago with MF after a routine blood test that showed high platelets. A further test found the Jak2 mutation and two others. A. BMB confirmed. I was also given the 3-5 years expectation. But I felt well and after the initial shock wore off continued with my life and tried to learn all I could about what was going on in my body. My doctor tested my blood every few weeks but in November last year my numbers started to fall fast. It was time for Ruxolitinib an inhibitor the only option ,other than a stem cell transfer, for our disease. I learnt that while it helped with other symptoms like bone pain, itching, fatigue, it exacerbated anemia. I learned that there were clinical trials for our disease that fall under Myelo Proliferate Neoplasms or MPFs and decided to apply. As I write I am in Houston Texas awaiting an appointment at MD Anderson. My age 81 precluded me from a SCT but you are much younger and while I read that it is a hard journey it saves many.

Keep fighting, trying to get as much information as possible ask about a stem cell transfer, eat healthy avoid foods that cause inflammation, exercise, and put yourself first.

best wishes and know that you are not alone.

Naugus.

Liefie over 1 year ago in reply to Naugus

Hi Naugus

I've looked at the stem cell option but it's not for me, as it might help with MF (only 50/50) but not the myeloma and my Myeloma is currently sleeping. Therefore I don't want to poke the bear so to speak.

I've been taking Ruxolitinib for a couple of years and it is a life saver, but it doesn't help with my anemia so i have regular blood transfusions.

Good luck with your trails.

Liefie

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