Myelofibrosis and stem cell transplant

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Hi I'm new to this forum. I'm 65 and diagnosed with Myelofibrosis. I've been on Ruxolitinip. The only way forward for me is a bone marrow stem cell transplant and I'm very lucky that a very close donor match has been found 

After several delays, I am being admitted to Clatterbridge next week to undergo this transplant

The nearer it gets the more scared I'm becoming. I had been admitted for a week and just before chemo, a flu virus was found, no symptoms, but a halt was called. I came home and have very much enjoyed fresh air, my garden blooming and now have to collect myself together again

So my new admission date is 7 May 

Unfortunately, unknown to me, this cancer is quite far advanced and diagnosis was only after breaking ribs falling down concrete steps and a scan was ordered.

A lucky unlucky fall....

I'm scared and wondered if anyone is going through something similar to this

Agk 

.

  • Hi again  and well done navigating across to this little corner of the Community.

    As I said in your first post in the Myelofibrosis Support Group..... I have/had 2 totally different types of blood cancer..... my Low-grade non-Hodgkin lymphoma (CTCL) remains incurable but 8.5 years (Oct 2015) out from my second Allo SCT its asleep (my first Allo SCT was in June 2014)........ but my more aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) is seen to be cured...... fingers crossed.

    We have had a few folks pass through the group who had Myelofibrosis and went on to have Allo SCT....... lets see if they are still looking in. I will say that people do tend to move away from the community once they are through SCT and getting on with their life....... and rightly so. 

    Allo SCT is a challenging process but do-able....... and the ultimate rewards outweigh the challenges experienced.

    Regardless the type of blood cancer, the Allo SCT process is basically the same for everyone.

    The first stage is the preparation stage. This is where you have treatments that can get your blood cancer into a position that SCT would be successful...... the aim is you would be in a window of remission that will give your new Stem Cell graft the best chance of taking control...... I will say that I could not be put into remission so went into both my SCTs with active cancer. This stage also includes all the pre SCT test that need to be done to ensure you are fit to go through SCT.

    The second stage is the conditioning stage. this can be anything from a week to in my case 2 weeks of high load chemo...... I also had radiotherapy....... this is a designed to kill off your immune system and clear out your bone marrow in preparation for your donor Stem Cells to be given to you..... this period is often expressed as a count down from say -10 down to -1...... with 0 being your T Day - Transplant Day.

    The next stage is the wait....... the few weeks waiting for the graft to take hold, you're all new immune system to grow and your blood counts to rise....... this period is expressed as day +1............ rising over the weeks with day +100 the time where they will start to check to see the mix of your own DNA and that of your donour.

    The waiting stage is often seen as the time were infections can show their face due to your reduced immune system..... I will say that I had no infections during both my SCTs.

    A few important things to consider…..

    Good mouth care……. so whatever you are given to use - use it religiously.

    For both my Allo SCTs my SCT unit supplied a two pack mouth rinse called Caphosol.

    I started using it the day I stated my conditioning and used it all the way through the 28/29 days until I went home.

    I set my phone for every 2-3 hours during the day to make sure that I was doing this all day. My head SCT consultant said that the Caphosol was rather expensive but if I used it correctly it would save me a lot of mouth pain and having to be on other drugs to over come any bad mucositis and this results in not eating with all the problems this brings.

    I did well with only one very small area developing and it was not a problem.

    Not many units use the Caphosol….. my consultant said that in the long run it helps to reduce problems, pain and tends to get people out of the SCT unit quicker and home.

    Another important thing is to be as active as possible getting up every morning, having a shower, getting dressed and walking the corridors of the ward or if you are not able to get out and about do regular stretching exercises and ask if there is an exercise bike in the unit you can use…….

    There are signs everywhere in my local Heamatology and SCT wards and clinic saying a week in bed is like ageing physically by 10 years…… I was turning 60 at my second SCT but had a few issues with a reaction to the Melphalan so ended up in bed a long time so I left the unit with the body of a 90 year old in a wheelchair.

    And drink, drink and drink as this is the tool you have to flush out all the toxins and protect your kidneys.

    That is lots of information - do come back with any specific questions you have.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi thanks very informative. I had to have my spleen reduce considerably in size and an additional breathing test while exercising at Broadgreen before they would consider moving towards a transplant. I guess the conditioning will have to be restarted on the 7 May, day -7

    Having read through I was already put on 4 mouth washes the week I was in and have continued everything since so I am in the habit of 4 times a day. 

    This is such a big step and hope there are no more delays now, it's been 4 months with one thing or another .

    Thank you for going through the steps.

    Agk

  • I would suggest that 4 mouth washes may not be enough….. have you been told what exact Conditioning you will be having ?….., there are a number and these are chosen to suit your type of blood cancer.

    For my first Allo SCT I had the TLI/ATG plan with 10 sessions of Total Lymphoid Irradiation (Radiotherapy) and 5 days of IV Anti-Thymocyte Globulin….. back then the ATG was grown in one horse in France!!!!!….. and as I have significant animal allergies I had to have significant amounts of IV anti-histamines so sleep a lot over those 5 days. 

    For my second Allo SCT I had a week of FluMelAlem30 this week a week of Fludarabine, Melphalan and Alemtuzumab.

    During the Melphalan I did the ice pole sucking thing 30 mins before through the 30 mins IV and 30 mins after to stop my mouth turning into one big ulcer!!!!….. this is why I set my phone fir every 3 hours during the day….. during all the treatment and until I was discharged.

     

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Pentamidine nebuliser, Fludarabine and Treosulfan for 5 days,,2Gy TBI 1 day, transplant, + days 3 & 4 Cyclophosphamide Mesna,+ day 5 Tacrolimus and MMF and then Abatacept

    Agk

  • Had a few of these during and post my 2 SCTs…. but some I don’t know.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge