Myeloma, autologous stem cell transplant

Hi again JenksB …… what your wife is feeling and experiencing at SCT day +10 is unfortunately rather normal but as her baby immune system slowly recovers the problems she is having will improve.

I don’t have MM but have had 2 Allo (donor) SCTs for my 2 types of rare Lymphoma….. the work up before transplant day is slightly different between an Auto and an Allo but from day 0 the journey is basically the same.

You may find this thread in our dedicated SCT group helpful…… Life after a SCT - A Survivor's Guide where we have tried to collect or post treatment experiences.

I had visitors all the way through both my SCTs….. the staff just made sure there was good infection control and masks were used…… but she could connect with her Cimmunity on the phone or FaceTime.

Please do reassure her that this WILL get better…… I was a month from my 60th birthday when I had my second Allo SCT……. It’s coming up to 9 years since my last treatment and I am living as good a life as any other 68+ year old can be living.

Thank you Mike, it helps to hear from those who have been through it rather than academic knowledge 

Hi  JenksB   i am Vespa,  AKA  Kevin,    i had  the same treatment   but now  6 months past SCT    and like your wife,   was on  IV  Antibiotics,  and platelets with sometimes  5  IV  lines waiting to go in me,   for  10  days and nights,   it was also the  most difficult part of the journey,    i  was    discharged on day 14,     though i was weak,  no appetite,  my  wife brought me   fruits,   cold drinks  as i could not eat any   solid foods,      the good news !!!    it does get better,   slowly,   it took me aobut   30 days at home before i could even get up the stairs  with out " Crawling'     sleep,   rest,    soups,   fruit    cereals,    i lost about    15 kg    so now i am in Remmison,  on  maintenance drugs, i am driving again,    cut the grass,  wash the car,    it gets better,     !!     please pass on my best wishes     to you also,  you are not alone,  so many on here have made this Journey Thehighlander  is an inspiration  to us all,    hope she gets home soon,    Kevin  

The link I gave you has some useful information but the most important thing I was told is this……

My Consultant told me that going through SCT was like doing a boxing match and a marathon every day over the months of SCT 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…..

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 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…..

Having read the Thehighlanders  story, that doesn’t sound right,  life experience sounds better I think there but for the grace of God. I am fortunate/unfortunate as I am not eligible for stem cell therapy due to age, but sometime you feel so helpless watching a loved one suffer and can only be there, but as to her weight, she was only 46kg before treatment so loss of weight is critical. She went through the first four cycles of chemo with hardly noticing it & thought she would be back at work in a month or so despite what the consultant said but thank you for your input, it gives me confidence that I can help her with her road to recovery., 

Hi   again,   if i may,   you may wish to invest in a   day of the week   medication    container,   as i am sure you wife weil also need some home meds,  to  keep the chance of infection at bay,          this slowly reduces as her  immune system picks up again,   antibiotics and  shingles in particular,   also i am sure your SCT   nurse will supply you and your local Surgery with a list of    inoculations that need to be given over a period of time,        i am still having some of mine,        for you to take the time to post this tells me that you care a lot,       and  the support of our carers is so important to our recovery,  be  as strong as you can for her,       i look back on my journey  and i am so happy to be where i am right now  compared to the alternatives,        all the best most   sincerely  JenksB JenksB 

Thank you, because as I said to Vespa she sailed through the pre transplant chemo cycles with virtually no problems, & thought she could go back to work within a month but this now has hit her like a ton of bricks & she is feeling really down & lost

Hi there I am into + 60 days  after stem cell transplant it is not an easy thing to go through the Isolation etc is very hard  some of  the symptoms  she is going through is normal but it will get better I have good days and bad emotionally like your wife  I suffer from depression and not eating   you cannot see people but she will get stronger physically as time goes  on I hope  this helps 

Thank you, I already have one, I made a spread sheet on excel for each month for the pre transplant chemotherapy drugs along with the appointments for Haematology, I try to do things like that to keep myself busy, but at the moment I feel a little lost at sea, being on my own give me too much time to think as I am well into retirement.

Thanks Kizi it’s just like that advert, every little does help, and every comment helps to feel less alone.