Neuropathy post SCT

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Hi.  I am now 45 days post SCT.    Recovering slowly.     Taking exercise and. In chair. Feet and upper body physio.     Only thing is my neuropathy  in my feet is very bad.      Gets worse at night time.    Told my consultant. He will inform my. G. P. For painkillers.   But as anyone else had this that then went away. 

worried it will not go away and nerve damage may be the outcome 

Consulant  may not progress with next two cycles of DVTB. as this can make the neuropathy worse.     Blood results are all very good. 

kevin 

  • Hi again Kevin  ......... first good that you are slowly getting there...... it can take time and much longer then you would want..... but day 45 is very early in the recovery journey.

    My main Peripheral Neuropathy was in my hands but I did have it in my feet as well........ and yes it all cleared up.

    My feet recovery quickest...... as I left the SCT unit in a wheelchair I was not 'on my feet' so the blood was not flowing as well as it should ..... so I got 3-4 months physiotherapy and this got me back on my feet and eventually walking without aids...... this was when the recovery in my feet started and the more I did the better it good........ so say 6 months for for to say that ia had no noticeable feet problems.... but they were always cold for a few years.

    My hands took a good 2 years to clear up.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thanks. Mike.  For your honest feedback and how it affected you.    It gives me hope     Yes day 45.  Is still a short time.   And I am doing well.        Kevin 

  • It can’t be overestimated how much the body goes through…… at times our bodies whole metabolism can be thrown into disarray and it takes time for this to unravel and reset back to normal…… often a new normal.

    I don’t know if you have seen this on other posts but my head SCT Consultant told me that going through SCT 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

    Some folks are lucky and bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.…..

    My consultant 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

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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