Mylofibrosis stem cell transplant.

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Hi everyone, i hope your all well! I am Lainy 54 yrs young from Glasgow with primary mylofibrosis.

I was diagnosed 7 years ago after 2 years of testing as doctors just didn't know what was wrong with me.

Just had my meeting with the transplant team and they have found I have the AXSL1 mutation. This mutation make my condition more aggressive and gives a poor prognosis...so not the best outcome i was hoping for.

So heading quickly to transplant, they have found me a young unrelated donor and more on standby if needed so that's great. I was hoping to wait until my son gets married but that's not an option, Dr want to get things moving now....

My transplant will be in The Queen Elizabeth in Glasgow so not far to travel.

I am shocked how fast things are moving, but gotta roll the dice on the cure right?

  • Hi Ammadoes,

    Sorry to hear you need a stem cell transplant. I had a different blood cancer to you but also had my allogenic transplant at the QE in Glasgow last year, it moved pretty fast for me too.

    I am happy to help in anyway I can  but want to reassure you that the ward staff are just wonderful and will do their best to make your stay as comfortable as possible. You will already know that the consultants there are just the best, I always feel treated like a VIP even although they see numerous patients. My advice would be to put your trust in the medical team there, they have seen it all before and any issues that arise are dealt with.

    Look after yourself between now and transplant and get those calories in whilst you can!

  • Hi again  and a warm welcome to our corner of the community. My story is rather long as I have had two Allo (donor) Stem Cell Transplants….. you can see my story by hitting my community name.

    I had both my Allo SCTs over in The Beatson so had the same team just in a different place.

    Although I had been on my journey with a rare skin Non Hodgkin’s Lymphoma for over 14 years my condition did become very aggressive in late 2013 so yes everything moved rather quickly.

    You may find this old thread helpful Checklist for SCT Unit

    Once you know the treatment (conditioning) they are going to use to take down your immune system do get back to us as there may be someone who has had it (there are a few diffrent treatments)

    Always around to chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi again after some delays my stem cell transplant is going ahead on the 15th march.

    While doing some test on my portal vein, the found pre cancer cells in my esophagus. Further investigation showed I have Barretts esophagus  and a hiatus hernia...lucky me Slight frown.

    Still trying to sort out meds 4 life for that wee surprise.

    As the date gets closer I gotta admit I am feeling anxious n scared.

  • Hi again  and sorry to hear about your ‘other’ challenges. I was left with a “most impressive Hiatus Hernia” following my second Allo SCT….. that was over 7 years ago now and I have no problems from it. I actually was looking at the scan of that area on Friday as I have been having other investigations but all is ok thankfully.

    Have you been told the name of the conditioning chemo you will be having to take down your immune system ?

    You may find this link helpful as you get ready for the process Checklist for SCT Unit

    I have talked with so many people over the years who had the same concerns pre SCT but most folks will say that the process was actually not as bad as the information that was given….. I think it’s the fear of the unknown.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge