Myelofibrosis

Hi Ammadores and welcome to our little corner of the Community although always sorry to see folks joining us.

I am Mike Thehighlander and I help out around our various blood cancer groups but more specifically on this our Stem Cell Transplant Group (SCT).

I don’t have Myelofibrosis but was diagnosed in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a and although my blood cancer ‘type’ is different I have experienced the SCT journey as I have had two Allo (donor) SCTs.

I think there has been 1 or 2 folks with Myelofibrosis pass through the SCT group over the years so lets see if they are still looking in.

We also have a newly set up dedicated group that covers Myelofibrosis MDS/MPN/ET/PV/myelofibrosis (MF) with the subject of SCT being mentioned lately but as far as I can see the person has not posted in the SCT Group.

However I do know 2 people with Myelofibrosis in my local Maggie's Centre Heamatology Support Group who have successfully went through SCT and are doing great and one was definitely older than 60.

My story is rather long and complicated (hit my community name to see my profile) but simply put - Stem Cell Transplant saved my life.

Back in late 2013 I was given 2-3 years with SCT being the only hope for stopping that count down.

I am 6 years out from my second SCT (Oct 2015) and I am doing great, I mean more than great........ and more importantly have been in full metabolic remission for over 5 years.

This is even more amazing in that back in 1999 when I was first diagnosed I was told I would never be in any remission that lasted more than 6 months.

Yes it can be a long drown out process but this also depends on the type of SCT with an Auto SCT (using your own cells) tending to lead to a quicker recovery than when having an Allo (donor) SCT.

I was assigned a Macmillan Financial Adviser at my SCT unit who helped ensure that we were getting everything that was available to get us through the process

Happy to chat this through more.

Hello Thehighlander, thank you for your response and pointing me in the right direction.

I will read your story with interest, I am so happy to hear you are doing well, wonderful news.

at present I am working full time but am struggling with fatigue and bone pain. Being self employed is a real worry too but I am very positive, well I tend to ignore my condition until this bone marrow biopsy result hit me like a train..I was happy plodding along in watch n wait.

Hi again and I see you have posted in the MF group.

I retired from teaching in Further Education  a few years before my condition kicked off requiring SCT. I had went back to be a Self Employed Joiner after retirement and most likely could have went back working a 3 months after my first SCT but decided not to do this. As it turns out it was the correct decision as my first SCT failed after 6 months so had to go through the process again…….. unfortunately the recovery post my second one SCT was rather long but as I said, my Macmillan Financial Adviser did a great job and sorted out all the benefits that I could get.

Always around.

Hi there. My mum has myelofibrosis and has had this for over 2 years. She is almost 70 and going for a stem cell transplant early this year providing her health checks go well. 

Hi Ammadores, I  myself do not have Myelofibrosis. However, an elderly relative of mine has and, was on watch and wait for 40 years. He is now 86 years of age and obviously, too old to have a SCT. The last  couple of years saw his health deteriorate, i.e, internal bleeding due to perforations,, gout etc. Twice they told him to prepare for the worst.  He continues to stay well. The hospital managed to stem his internal bleeding. He currently, receives regular blood and platelet transfusions. His consultants are amazed, and delighted he continues to respond well to treatment. In fact, his last three visits he only received platelets as his blood count was excellent. He is remarkable, inspirational and continues to enjoy his life…

I hope Ammadores my relatives journey gives you some hope. Good luck with your treatment.