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)

  • Thank you Paul 

    hugs xxx

    Moomy

  • Hi everyone,

    I just wanted to pop in and let everyone know it is my 5 year re-birthday today! 

    For anyone just about to start or in the middle of it, I send all my best wishes. If you are having some tough times, just keep hanging in there as best you can, those tough times can’t, and they won’t, last forever.

    All the very best

    Greg

  • Have a great day Greg.... these milestones are important not only for us and our family’s but also for everyone looking in Birthday

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Happy 5th Re-Birthday Greg! 
    have a good day

    hugs xxx

    Moomy

  • Daughter has done her third venesection and her ferritin levels are reducing fast. But they are still over 100 times too high.....she has blood syringed out as that needs a finer needle (and her veins are not up to a big needle any more) . They keep a careful eye on her haemoglobin levels at the end of the session and will now be going to fortnightly sessions. 
    she feels fine, they replace with fluid as her blood pressure is normally well on the low side so if they didn’t, she’d be feeling awfully faint. 
    Hugs xxx

    Moomy

  • Daughter and her partner have both had the Astra Zeneca Covid vaccine (yesterday), daughter says her partner feels rough but is coping, she just has a sore arm. As son had a full-blown reaction that kept him off work a couple of days, I think they got away lightly, perhaps demonstrates daughters low immune levels? But I’m glad she insisted partner got the vaccine too. 
    Hugs xxx

    Moomy

  • Good news moomy, I had my AZ Oxford last Wednesday, very sore arm for three days, sore heads and rather rough on Thursday but all good now. Start of April before I get Number 2.

    The lady three doors up from us has her second jab booked for 1.30am Flushed 

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Daughter is today completing her ‘Run 50 in February’ for Blood Cancer UK, linking up with a close pal via FaceTime for the final half mile! Bless her! 

    Hugs xxx

    Moomy

  • Good in her ClapClap

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • I don't know if this has been mentioned, but one aspect of allogeneic transplants is that if one's donor has allergies (possibly even asthma), we may very well inherit them. My son was my donor and he has a hyper-vigilant immune system which began with him being allergic to his mum's breast milk. He went on to develop asthma, as well as allergies to dairy products, all seafood, beef, eggs, carrots, and a sensitivity to cross-contamination in prepared foods. Not unexpectedly, I developed some, but not all, of those allergies. Thus, antihistamines are part of my daily regimen and I carry an EpiPen (Epinephrine injection) with me. 

    We are oh so full of complaints and grumbly. However, we must be alive to have complaints.  

    ______________________________________________________________________
    One cancer (PTCL-NOS) 3 times. Two other cancers: Angioimmunoblastic T-Cell Lymphoma 2 times, and 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12/22 diagnosed with Squamous Cell Carcinoma. Thus far, 14+ years, 20 drugs, 4 clinical trials, Total Body Irradiation, 1,000+ years of background radiation from scans. 7th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.