SCT. Imminent for Myelofibrosis

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Hello

i have an SCT booked at Nottingham City Hospital admission date is July 3rd .

Does anyone have any useful advice for me . I know it’s going to be a tough ride . I’m 68 and reasonably fit and don’t have any other health issues as far as I am aware . 

Has anyone had an SCT in Nottingham ? 

Would be interested to hear about other people’s experiences after transplant like

how long it took to be able to get back on your feet and over the worst 

how long before you could eat more normally ? 

any advice re avoiding infections 

did you pick up infection from visitors ? 

  • Hi Esmie j

    My wife had her SCT back in August 2021. She was in hospital for around 3.5 weeks incl.her conditioing treatment 7 days before the transplant. Food can be a struggle as tastes can vary. Try and eat as much as you can,,even if you graze from time to time. Fatigue is very common post transplant and every patient t is different. My wife lost a stone and a half and quite a bit of muscle wastage. Try and stay active as you feel comfortable with,it's easy to overdo it, so take your time . In total my wife was feeling much better after a few months and certainly after 6 months well on the way to much fitter state. Now 21 months past, she if feeling very well. Luckily she suffered no GVHD or any other infections. Try to keep well following and avoid crowded places. You immune system will take some months to recover. Try not to be around people who have had or have cold like symptoms.

    Your taste buds will recover fairy rapidly ad then you can enjoy your favourite meals. I guess you will have regular weekly visits to your team following, this hopefully will become less frequent as the months go by if all goes well.

    My wife was 64 at time of her SCT and had an allo transplant with her sister as doner.

    Wishing you all the best, if you want any more info of help with questions please let me know.

     FULHAMBOY (Nick)

  • Hi  and a second welcome to this corner of the community.

    It would be good if you say what type of blood cancer you have and what type of SCT you are having as this will help tailor peoples answers.

    I have a very rare skin NHL first diagnosed way back in 1999 when I was 43.... it's a long story that you can see in the link at the bottom of my posts..... but long story short I had 2 Allo (donour) SCTs with cells from my brother.

    The first was in June 2014. I actually had no chemo as part of the conditioning treatment to take down my immune system. It was a new approach for my type of NHL and if it worked I would recover very quickly...... well I did recover so quick that I actually left the SCT unit in Glasgow and drove the 4 hour drive back to Inverness...... but by Dec 2014 the SCT had failed...... but I have now talked with a good number of folks who have followed the same parth and they remain in remission to this day.

    My second Allo SCT was in Oct 2015 and the journey was very very different as you can see this in my story...... but I turned 67 last Nov and am living a great life after eventually being tolld I was in remission in Sep 2016.

    The average recovery time is about 6 months.... some recover quicker, others take much longer.

    Before we did the drive home after my first SCT we went into a restaurant and I had a big meal.... (the restaurant was very quiet)........ but after my second SCT it took a good 4 months to get my appetite back..... I had lost 27kgs over the treatment process.

    As Nick has said try and keep active as the less you do the longer the recovery...... I ended up in the CCU UNit a few times so was in bed for a long time after my second SCT so I left the unit in a wheelchair and had to get physiotherapy to get me walking again.

    Infections can be a risk........ but you have been through the covid years so you know how to keep away from infections.

    I had no infections when in the SCT unit for both my SCTs and none following my first SCT........ but lots after my second SCT........ most likely did pick up a few of the infections from family but who knows.... if you are going to catch an infection there is not much you can do to stop this apert from become a total recluse...... and life is too short to do this so its a ballance...... but its the summer so you will be able to get out and enjoy the fresh air after your SCT.

    I have asbestosis to this was seen as a 'risk'...... but as SCT was my only hope due to how my condition had developed we had to take the risk and it paid off.

    I am sure you have lots of questions so put them into the thread and we will help out as best as we can.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thankyou so much for your reply Fulhamboy . It is very informative .what you say is encouraging .

    I am pleased your wife is doing well after her transplant . 

    Did your wife isolate for 3-4 months or longer ? 
    I intend to be very wary of people when I go home . My consultant suggested 6 months at least being super careful /isolating . 

    My brother is the donor . 

    Did your wife manage to walk up and down stairs ok when she got home in the morning and the evening ?

    kind regards and thanks again from Esmie the Forestgirl !!

  • I have Myelofibrosis .

    my brother will be the donor for my SCT

    Thankyou for your reply which I will give a thorough read tomorrow when my mind is fresh .

    kind regards 

    EsmieJ

  • Hi again Esmie j

    We are lucky, we have a bungalow, however I realy can't se a problem with stairs tbh.

    I see The Highlander replied to your post. As he stated it would be good to know which blood cancer you have been diagnosed with as people can relate easier if yours is the same. My wife had AML, HAD 3 rounds of chemo in local hospital then Fag ida in 2019, relapsed in Dec 2020, then SCT in Aug 21.

    If you keep active a walk a little daily that will help.

    You don't need to lock yourself away, try and get out with fresh air but be careful not to risk any infections or viruses. If you have grandchildren, this could be tricky as they pick up so many things at school to take care there. Do you know what conditioning you are being given?

  • Hello again Fulhamboy.

    I have Myelofibrosis which is an MPN 

    I don’t know what conditioning I am having . I havnt been told . To be honest everything has happened quite quickly . I only found out the date I am going into hospital last week . The investigations by the hospital have gone pretty quickly and the consultant has got me booked in asap as she says it’s better to have the SCT in the summer when there are less infections around . 
    I will ask more when I go back in 10 days time . 
    all I do know is that I will be having chemo for 10 days prior to the actual transplant . 
    The stem cells are being donated by my brother . 

    currently I feel fit and well , I just have an elevated WBC count and my platelets are dropping . So I am going into the SCT in reasonably good shape so fingers crossed that will help me …… one never knows ! 

    thanks again for your reply 

    Esmie J

    I will look into changing the heading of my topic . 

  • If you want to edit anything on your posts hit ‘More’ at the bottom of ‘your posts’ and this will bring up ‘edit’ facility.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge