Life after stem cells

Hi Scotland girl it's good to meet you here but prob this is not where you would ever wish to be ! First of all congratulations to your Mum for getting this far and to you for supporting her . 

I had a SCT in April 2023 for Myeloma and it is a rollercoadter road to tread but totally worth it .It's natural to be scared but try to remember you are all doing what you can to work your way through this .Everyone reacts differently to the treatment but one common factor is that it takes time to recover .Physically and mentally . She does need to be careful of infection .I warned all visitors to be mindful of visiting if they had the slightest sniff .Smell and appetite for me cane back very slowly, but it did come back .My best advice would be to encourage Mum to eat what she likes when she likes . I was hopeless in hospital but got better when I was at home . Just nourish those cells .Be kind to yourself as well .Home is a great healer .Encourage Mum to listen to her body , rest rekax and recover . 

Best wishes to you both . I'm great now in remission and loving life xx Sue 

Hi  from myself  Kevin AKA Vespa,  i am sure you are going to get some good responses to your  well founded question,     i am now 18 months post SCT     i am male  68 now,  diagnosed on my 66 th Birthday,       right now,   she is probably in the lowest level she is going to be at,  with   low Immnune  system,   fatigue,    unable to do dome simple things we all take for granted,      it gets better  but very  slowly,    appetite   does  return,     slowly,   eat little and often,  and focus on protein,    taste  of foods goes out of the window,    i loved  Magnum ice creams,    they helped,!         Diarrhoea   is a problem,  usually  so be aware of  help she may need,       i used to sleep in the afternoon,    then  slowly i could put my own socks on,     these are little visitors worthy of celebrating  !     it can take some time,  6-12 months,       i  am now leading a good life,       not so much fatigue,  i drive,  walk my dog  3 x per day,   cycle a bit,     DIY jobs,  i love to cook,    i have put weight back on,   now had all my missing inoculations,    it  does get a lot better,     i like so many  others call this  "  the new normal"     doing whats   best is what will come naturally from a loving daughter,   my wife of 46 years  helped me so much,        Macmillan have a booklets called " caring for the carer"   please down load and read,       also as  a carer  you may be eligible for some fiancial support such as  AA,  = Attendance allowance,   also  she may be eligible for a  blue parking badge,  i got one due the fact i could not walk very far  and  i was vibing hospital  3 times per week for treatment  pre  SCT       many more things i  could say, but others will offer their  balanced views,     YOU ARE NOT ALONE !    Kevin 

*     victories   not  visits  

Hi, my husband had a stem cell transplant 18 months ago .   Once he got home we took a lot of precautions.   I was cleaning handrails light switches anything that was touched by numerous people especially by the grand children.   In crowded places like supermarkets we always wore masks.   His appetite picked up a little.   He ate little and often.  Anything really that he fancied.  Usually sweet stuff!!!   He is now in remission and having maintenance therapy.   However he still gets very tired.   Some days are worse than others but this is our new normal.   He had always been very active and finds the fatigue so frustrating.  It is so scary facing the unknown .   My husband is on a clinical trial and his team are amazing.   I never though I would have to leave work to be my husbands carer. We are able to get out and about when he’s having a good day.     It is hard at times and it is overwhelming.   Remember you must look after yourself too. 
sending much love and hugs to you both. Xxx

Thank you everyone this is useful to see. 

Hi Scotlandgirl888d9dcd , I see that you have been getting some great reply’s. I don’t have Myeloma but I have had 2 Allograft SCTs (June 2014 then Oct 2015) for my 2 rare types of Lymphoma.

I often post this as it helps put an average timetable to recovery

My Consultant told me that going through the SCT process is 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.….. 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…..

There are sign everywhere in my local Heamatology ward and clinic saying a week in bed is like ageing physically by 10 years

My SCT consultant gave me this basic percentage 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 prepare 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 recovery time-line is about 6 months with your recovery improving about 10-15% per month post SCT

This is an average time-line….. with general acceptance that when in the hospital going through the SCT process we are physically at about 50%…… any less would indicated some comorbidity issues like pre-existing health conditions that may reduce the 50% starting point and possibly add a month or so onto the recovery end…..

For example I have Asbestosis so this was looked at very closely and due to my prognosis was seen as an accepted comorbidity……  so I went back a good 10%…… other issues could be blood cancer type specifics, genetics…..