Life after a SCT - A Survivor's Guide

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Let's see if we can collect some helpful information and real life experience that we can signpost folks to after they have come home from their Stem Cell Transplant.

A couple of useful things I found were:

My Consultant told me that going through treatments like these was like doing a boxing match and a marathon every day over the months of treatments and this was done without any training.

Think doing the London Marathon without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality - it took me a good 2 years and I was 60 at the start of my recuperation.

Yes some folks bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.  6 months is the average recovery time…… at 3 months post my second SCT I was just out of my wheelchair and able to do a few steps with my walking sticks…. I was not able to feed myself due to my bad Peripheral Neuropathy and even then I was not eating much……. Your body has been through far more then you imagine so be kind to yourself, give yourself a break as you are doing good and honestly this will pass.

My consultant also gave me this basic scale for classifying where I was on the recover journey.

50% = when in the hospital going through the transplant process.

60% = significant medical/physical issues that do not allow any physical activity apart from a shower and short walk and not able to prepaid food. Reliant of others for preparation of food.

70% = Significant medical/physical issues that do not allow any specific physical activity (not including a shower) but short walks and making a pot of soup. Will nap after the task.

80% = Physical issues that limits you to one activity per day. (not including shower) Able to prepare some food for a couple of people but most likely still taking a nap after activities.

90% = Some physical issues remaining (weak legs etc) but able to do a few tasks and may not be fully fit for permanent work but could do part time work. May have to .take a nap after doing tasks or work.

100% = No physical after effects and able to do multiple tasks including being back to work.

She also said on average the recovery is about 6 months with your recovery improving about 10% per month post SCT

A web page by the Anthony Nolan Trust - The First year post SCT (link)

A web document by Dr Peter Harvey - Life after Treatment (link)

  • If any of you follow the ZOE daily Covid research, you will know that there’s a paper being aired about the vaccines and immunity on you tube and Facebook at 4 pm today.

    I’m going to follow as of course it’s of interest; there is also a study referred to on the BBC news page this morning. Covid vaccine being tested in patients with low immunity www.bbc.co.uk/.../health-56256505

    By the way, daughter (and her pal) raised a respectable amount for Blood Cancer UK, proud of them! 

    Hugs xxx

    Moomy

  • So it appears that, as far as they know, that blood cancer patients ‘may’ get a lower response to the Covid vaccine (whichever they get). I think that’s something we all guessed anyway. But it’s still important for them to have it.

    Hugs xxx

    Moomy

  • Yes moomy it’s to be expected.... but the study highlighted, rather badly by the BBC did not explains the facts behind the headlines as it is a very small group that was looked at Rolling eyes

    lymphoma-action.org.uk/behind-headlines-covid-19-vaccine-efficacy-people-blood-cancer

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Daughter (and partner of course) is looking to move to Market Harborough but hopes to stay with her team in Oxford as they now know her well and she trusts them. Her ferritin levels are reducing but they now need her to have 3-4 weeks between ‘letting ’ as it tends to push her liver hard to get enough iron out to stop her being anaemic. But she is already feeling the benefit, has more energy and hasn’t experienced the joint pains she got a couple of years back - so far! 

    She popped by en route back to Henley for a distanced path-side chat. Has been working on her next solo album and played me some; it’s incredible! 

    Hugs xxx

    ps, we are going through it as a family at present, my husband of 51 years has advanced kidney cancer (a Covid delay) and is very unwell and in hospital. Daughter (and son) are being amazing but support from a distance is so hard on us all.

    Moomy

  • Hi Moomy I'm going for my stem cell transplant in 3 sleeps, I'm having my own cells replaced and feel very fortunate.

    I read your post and you have made both myself and my family feel a little more confident. Could you give me an idea of what to expect the first week home. Its so that I can tell my family, I don't want them to worry if I can help them in any way.

    Thank you, Jackie xx

    Jackie
  • Hi Jackie, 

    expect weakness and not wanting big meals! Other than that remember you’re ‘on the up’ and will improve. You’ll probably be on some preventative medication, and possibly hate it, but do take it! Though it’s now a number of years since daughter went through, so protocol may have changed a bit.

    best wishes

    hugs xxx

    Moomy

  • Hi Jackie, I had my own stem cells, when I returned home, I was always cold, didn’t eat much and was tired. Showering took me a while. I had some medication to take for a few months. I used to play low music to help me drift off to sleep if I struggled sometimes.

    But here I am golfing, doing Zumba and Pilates and today walking for two hours. I’ve been in remission since August 2017 and my bloods are very good and the consultant says my prognosis is very good. I wish you well, listen to your body when you get back home.

    Good luck Sue x

  • Hi Jackie, 

    Like you and Sue I had an auto SCT. Mine was in June 2020 so good luck with yours. when coming out of hospital as others have said you will be fatigued and have no energy and even a trip to the bathroom will feel daunting. But do try to do a little each day and slowly improve on the 'steps' as you go. My appetite was poor for a month or so - little and often and stuff you like is the key!  It will come back.  You do loose a lot of muscle and strength while in hospital and it takes time to get that back.  I felt generally 'OK' about three months after and now go on walks most days (6 or 7 miles) and the odd cycle and am back working (at home).

    You do get lots of strange aches and pains and these can often be a worry - but the body has taken a beating with the chemo and be ready to expect the unexpected.  I had strange jaw aches and aches in the lower ribs which worried me - I looked on here and noticed that others (including Sue!) had experienced that so that helps - it went away with time and the consultants were not worried.

    What else.... drink lots of water and rest up when tired!  Even 9 months after I probably sleep a little more than I used to and no longer feel guilty about a 30 min 'nap'.

    Best wishes and sure you will recover well.

    Mike