Husband having first SCT

Hi Denali,       that is a lot to carry   on your   shoulders and  heart,    i am Kevin AKA  Vespa    11 months post SCT  transplant,        We all  have different  versions of the MM,      no paths are the same,   but the treatment plan for your  husband  seems to followed the normal   way of   getting into Remmison,    i think the  consultant   needed to delivery the possibilities,   to help you both prepare   as mine   did lay it on thick in what will  (  could ) happen,     post SCT   i took about 10 days to recover and the  Mephalan  for me was the biggest   worry,    the  recovery  is slow,   but   please encourage him to   move around in his isolation  room,   and shower and   eat ,       he may need  different foods to the normal hospital offerings,   my wife brought me  fruits,   drinks  even ice cream,   protein  shakes   ( its tough)   but every  day you get a bit  stronger,   and  please,    humour helped me a lot!      going home is such a relief,  but   having to "   crawl  upstairs  was  demanding,    the post SCT   treatment  followed the same  drugs as pre  SCT  with  steroids  also  lifting me up,   it was also  3 months   post that they   told me,  no signs of  MM  in my blood and i remain in Remission,   on  maintenance drugs called Lenolidamide  (  not  chemo)     i do hope the chemo  knocks  it on its head,  but remember  it also  kills good things in your body   and they need to be replaced,    through     diet,   isolation  as the body is  at its lowest  point of being able to   hold back infections,        i now lead a pretty good new normal   and i can drive,   and see my grandkids,        best  the very best wishes,       reach out to us,   you are not alone,  and without our carers   we would not manange,      so you also need to make sure  others support you,    Kevin 

Thanks Kevin, good to know you have come out the other side so positively.  I wish you very well.  Your journey sounds very similar to my husbands he is 67 and relatively fit and motivated to move around and recover so hopefully he will find the strength to work at it again.  I guess I just have to face that it will be another 3 months + of treatment and support before anything like "normal" life may resume.  We also have grandchildren, 2 gorgeous girls 1 and 2.  Can I ask how soon you were OK to see them as I am aware that children carry a lot of bugs now that they go to nursery! 

Hi  Denali    i am same the age,  it    buggered up my retirement plans !   it was about 8 weeks before  we welcomed the kids in the home again,    and  i was fitter   and able to cope,  and  had to get to know the young guy again  (  13 months at that time)      visitors    always wanted to come,  but it was family first,  and the   Covid type approach of  sanitise hands,    my wife    cleaned down banisters etc with surface spray,  and to be honest  i did not get any bugs,  i would wear a mask on trips out to  shops etc,     i wish i had kept a diary !   but  the little victories of   putting on my own socks,     taking    trousers off,   as the SCT  was about a year ago,   i had the benefit of nice spring weather    to sit out in,   i  have always been so active and motivated and through work travelled the world,    our son got married in October  23,    in Australia,  but i could not attend   and   stayed at home and looked after myself,    shopped drove to my own  outpatient appointments etc    so   i guess  i think my recovery was   may/june  time   3-4 months post SCT,         please do not ignore the "  mental health " part of it,  us men   when asked will answer  ":   i am good everying  is fine "  !   my wife and i made  pact to be brutally honest about how  we both felt,    the patient  and the carer,   it  will  be a "  loving burden" to you,  if you know  what i mean ?   and he may  not wish to add to your   concerns,    i could not have got to this position without her   support and care.    please also enquire about   carers allowance,  Stem cell transplants are considered to be  a " disability "    and i for a time could not walk   and we got a blue badge,  also  we applied for and was awarded    Attendance allowance per month,  my wife had to give up her PT  job to care for me   and this helped cover  that loss of income,      Kevin 

Hi Denali, My husband was diagnosed High Risk MM in April 2023.   This only came to light after suffering chronic back pain for months .  He had in fact fractured several vertebrae due to the disease.   He opted for a clinical trial which was chemo therapy weekly for 12 months.   He had his stem cell transplant Valentines Day 2024!! He was in hospital for 2 weeks craving anything cold.  Numerous ice lollies cold drinks and trifle which he never eats!!    I can tell you he is now in remission and on maintenance therapy which involves lenalidomide on a 21day cycle and Isatuximab chemo every 2 weeks.   He is doing ok but struggles with extreme  fatigue.  This is now our ‘norm’.  We take everyday as it comes.  His medical team are amazing .   Like you I have grown up children and I have young grandchildren and it is hard to stay positive for everybody all the time and yes I do have my moments and I take myself off for a walk.   
I am sending much love and hugs to you and your family. Xxx

Thanks for all that advice Kevin.  We are a year behind you but need to know what to expect.  Hope all continues well for you. 

Hi,  Thank you for your reply.  I am glad to hear that your husband is in remission.  I can see it is going to be a long journey and that our old way of life is probably not coming back.  We will have to see what our new normal is.  My husband is going through the worst days after chemo at the moment so is quite low and miserable.  We have been told that once the stem cells graft on day 13 he should begin to feel better.  He can 't wait to come home but I am a little worried about all the responsibility it puts on me to keep the house clean, and make sure I don't give him food poisoning with my cooking!! 

Hi Denali,   I’m sure he will feel better once he gets home.   I was so anxious to keep the  house ‘germ free’.  I kept a spray bottle of disinfectant and used to spray door handles light switches bannister anything touchable it’s strange how you soon get into the routine.   I also made sure that I opened the windows everyday to ‘blow through’.  Let some fresh air in. My hubby lost his appetite so ate what he fancied .   I’m afraid this wasn’t at all healthy  but it was food.   He found eating little and often was better than 3 large meals.   So now he is on maintenance therapy which is chemo every fortnight hopefully to keep him in remission.  Sending you all best wishes and hugs xx

Thanks, it is good to chat to someone in the same position.  I know I will cope, my husband had a plasmacytoma in July 2023 - a solitary tumour on his spine which caused a vertebrae to collapse and crush his spinal chord so he couldn't walk for a while.  It is linked to myeloma but he didn't have full myeloma at that point.   So we have been through quite a trauma already and dealt with it.  It was hard when he was then diagnosed with myeloma last June but hopefully he is getting to the end of this round of treatment.  Chemo every fortnight is quite a commitment isn't it?  You must have to plan your life around it.  Take care and thanks for sharing it has helped.