After the transplant…

This topic contains 18 replies, has 8 voices, and was last updated by  jules33 6 years, 3 months ago.

Viewing 15 posts - 1 through 15 (of 19 total)
  • Author
    Posts
  • #122073

    adelaide56
    Participant

    Hi

    well my husband had his transplant 5 weeks ago….he was in hospital for 3weeks and had an infection, but really tolerated the treatment well and is doing well at home.  He is eating ok as long as we don’t talk about food and I cook it!  He still hasn’t got much appetite and gets tired if he does too much.  His first outpatient appointment went well, the consultant was really pleased with his progress.

    Today we were told his para protein level had come down to 0.8… It was 1.3 before the stem cell transplant.  I don’t really understand whether this means he is in remission or not?

    Anyway…it’s a relief to be through the transplant and we are feeling positive and hopeful.

    #122074

    mervyn53
    Participant

    Dear Adelaide

    I am heading for the transplant in July. Any tips ?

    Thanks.

    Mervyn

    #122075

    adelaide56
    Participant

    Hi Mervyn

    I think everyone will have a different experience of the transplant, but it wasn’t too terrible for my husband.  he responded well to the initial chemo tablets, steroid and thalidomide and was feeling really well in the month leading up to it.  harvest was done in one session,  5 hours lying on a bed watching daytime TV….it was good that I was there for company and to feed him his sandwich!  I think the following 4 weeks were hard, waiting to go into hospital, but we kept busy  doing nice things amid spending time with the family.  Also he was enjoying his food, so we made sure he ate well and heathily.

    Going into hospital was a nervous time, probably for me more that my husband…he is a very calm person.  There were only 4 days when he felt very poorly.  He had an infection which is to be expected when the white corpuscles and bone marrow are at rock bottom.  At this point he lost his appetite completely and it was hard to persuade him to eat anything.   It is vital that you do eat, but if it gets too bad they will give you protein type shakes.  You will most likely lose some weight.

    He took books and his laptop and there was a TV, so that helped with the boredom.  You are left alone a lot, even the staff just pop in and out and you need to ring if you need anything.   I visited a lot, but on the bad days I just kept the visits short.

    Dont know if I’ve given much advice, but hope that all goes well for you.

    Best wishes

    #122089

    mervyn53
    Participant

    Hi   Many thanks. Will bear these points in mind.

    #122174

    sarahe
    Participant

    Hi Adelaide

    My husband had his transplant just over three weeks ago. He has Light Chain myeloma. Like yours he was in hospital for about three weeks too. His appetite finally seems to be coming back a little which makes things easier. His energy is coming back slowly too. He slept a lot at first. His progress seems good with blood counts rising slowly.

    We’ve been told it won’t be until the 100 day after transplant point when they will do a bone marrow biopsy and get the results of that, that we get an ‘outcome’. I hadn’t realised before the transplant how long it would be after it before you get any sort of answer, so there is a sense of limbo. I wish I had known before as then we would have been more prepared I think. But we are now concentrating on taking the time to let him get stronger slowly and steadily.

    Hi Mervyn

    All the best for your transplant in July. Adelaide’s advice about transplant is all good. My husband actually just slept a lot (he had loads of things with him, PC with games, audio books etc. which he barely touched) so don’t be surprised or worried if you don’t feel much like bothering with doing anything. Just try and do all the hygiene stuff they suggest.

    One transplant tip is that when they give you the Melphalan make sure you get ice lollies to suck as it is supposed to help for some reason. Although my husband lost his appetite he didn’t get the dreaded mouth ulcers.

    By the way one consolation if you are on G-CSF injections between priming and harvest and you get bad bone pain, is apparently that it can be one good sign that harvest will go well. (It doesn’t mean it won’t go well if you don’t get bone pain). The run up to transplant seemed like quite an intense period with lots of appointments. Best of luck with everything.

    Sarah

    #122176

    mervyn53
    Participant

    Hi

     

    Thanks for this. Very helpful.

    M

    #124608

    mojo
    Participant

    Hi, my husband is due to go for his stem cell transplant in 3 weeks, having responded very well to treatment since diagnosis at Easter. He has been told he is already in remission (paraproteins less than 1) and harvested more that enough cells at the first time of asking. I work full time and, although I know every case is different, I feel ill prepared for what the post transplant period will bring once he is home. I spoke with our lovely MacMillan nurse today expressing my concerns and when I said that I’d have 1 week carers leave and 1 weeks annual leave to take when he comes out, she raised her eyebrows somewhat. I thinks I’ve vastly underestimated how long the recovery after transplant can be….i’d be interested to hear the experiences of others please. Thank you 🙂

    #124609

    tonyf
    Participant

    Evening Mojo, I was 68 when I had my SCT. I live in Leicestershire and attend the Royal Infirmary. I was in hospital for three weeks during the SCT, Returning home was very strange and unnerving, guess I was institutionalised! My wife is my carer, and although I am very active and do as much as I can for myself I did find that I was reliant upon my wife. I could shower and wash etc but was pretty helpless at everything else. I didn’t g out for ages and visitors were not really encouraged. Appetite was non existent, but did drink lots!
    The consultant did not want to see me for 100 days, unless there was a problem. I guess it was 6/8 weeks before I ventured out and started walking the dog and getting my life back, once I overcame the initial shock there was no stopping me. In the early days I did sleep a lot during the day.
    Not sure what to suggest to you, I guess it’s a question of wait and see how your husband is managing.
    Hope it goes well for you both.
    Regards
    Tony F

    #124610

    adelaide56
    Participant

    Hi Mojo

    So far so good…my husband had a paraprotein of 0.8 just before the SCT…he had a successful harvest and then 3 weeks in hospital for the chemo and transplant.  He is now 6 months post transplant with most recent bloods having unmeasurable paraprotein.  Really good news.  It’s not been an easy 11 months, but we are in a better place now.

    With regard his needs when he left hospital,  the first week, he had a temperature spike and had to go into the day unit to be checked.  He was given antibiotics, which worked well.  He was tired for about a month and I did all the cooking etc.  We got a cleaning lady, so that was covered.  We were very careful about hygiene and had antibacterial gel and hand wash all over the place.  We also had few visitors and obviously put off anyone with any health issues that could cause him to get an infection.  He was able to shower and look after his own needs.

    One of the hardest things was persuading him to eat.  He had no appetite at first and couldn’t even talk about food, or decide on what he felt like eating.  In the end I did all the shopping and cooked food that I thought he might eat.   Then he chose anything he could manage.  This worked and within  3 weeks he was eating small varied meals and his appetite improved quite quickly after that.

    I am retired and so was able to put time to this.  Also we have a son and daughter who were able to support when they could.  I think your main problem is that you just can’t gauge how your husband will be when he comes out of hospital.  Do you have family or friends that can look in on him when you go back to work?  I didn’t need to be there all the time and we had 24 hour phone contact numbers for the hospital if there were any problems.  Also, if needed, would your work be able to offer you any extra personal time?  This is not an easy procedure for your husband or you to deal with, is there so one you could talk to about this?   Macmillan were also helpful to us with advice and just someone to talk to at times.

    I do hope things go well for you both and hope this has helped.  You will get through it….

    best wishes  😀

     

     

    #124611

    mojo
    Participant

    Morning and thank you for your responses.

    I think the maximum time I could get from work would be 4 weeks made up of my 2 remaining weeks of annual leave (leave year April to March) and two weeks carers leave (carers leave weeks cant be taken back to back apparently). Both of us have elderly parents, not particularly local, with their own health issues and no family close by. Hubby’s parents will come down on occasion and stay over in a hotel close to the hospital where those visits are concerned, allowing me the odd night off, which would be reluctantly taken, but much appreciated :-). It  is very much a case of wait and see, but my priorities are with my husband, and after having had a nights (slightly broken) sleep, have woken with a clearer idea of perhaps how to deal with the up and coming issues.

    Thanks again, and best wishes to you all. 🙂

    #124613

    jules33
    Participant

    Mojo,

    i have a similar conundrum with 3 children to add into the mix. My husband Mark diagnoses came after 3 months of debilitating back pain . It took a further 6 weeks post diagnoses to get the pain under control. We are rapidly approaching the end of induction chemo and the Dr is suggesting SCT despite poor cytogenetic results. Our problem is financial as well I can not take any more leave ( without a pay cut) & Mark is about to go onto half pay. As a young family with 16 years left on our mortgage this is a huge worry. I fear Mark will have to stay in hospital or respite until he can fend for himself post SCT as I can see no other way to give him the care he will need. Not to mention the infection risk that school children bring. We have yet to access any carer support 3.5 months down the line maybe there is some in the pipeline. We don’t have a great relationship with our Specialist nurses since we left a support group meeting early ( we were honest said work/ school runs meant i couldn’t come in future & not Marks thing). No one to really ask these questions to .

    Thank you for raising the question I hope everything goes well for your husbands SCT & that your solution works out.

    Jules

    #124615

    tonyf
    Participant

    Jules, you seem to be going through a lot of emotions at the moment, no one in our situation should have to do that!
    Why not contact Macmillan, they are very sympathetic and very capable of giving good sound advice, particularly how to access financial support and carer support.In the past we have found them to be very helpful.
    Wish you all the best.
    Tony F

    #124617

    jules33
    Participant

    Tony,

    thank you for the pointers unfortunately we do not yet qualify for help (Marks pay has to drop). In our area we have a Force centre with a CAB adviser in situ 2 days a week who has been a great help & has looked at the small print as they say. We have used savings to purchase a wheel chair, an adjustable bed & create level access to our home. But I check the post in hope everyday !!!

    Sadly because I work more than 20 hours a week I cannot be designated as a carer so suspect we won’t qualify again.

    I will add Macmillan to my list.

    thank you again, Jules

    #124618

    annlynn
    Participant

    hy jules so sorry you need to be on this forum. this disease is not selective of age or circumstances is it. . Im sorry you rushed to purchase a wheelchair social services whould have sorrted you out . Do. you not have anyone who could claim carers allowance someone close who doest work r
    the 20 hours it can still go in your bank if they could help you with some of the everyday careing. I can tell from your post its all getting to you understandably talk to your close family and take a little bit of me time . ps. after my sct my husband was back to work full time but i was ok at home he left me a sandwich ready in case i needed it didnt have much appetite to be honest but i wasnt confined to bed other than a nap afternoon if needed . take care

    #124621

    mojo
    Participant

    Hi Jules, i’m so sorry to hear of your husbands diagnosis. You’re on the right place here for support. The Macmillan nurse that we see is absolutely wonderful and very knowledgeable. The advice she’s given me, as has a colleague who’s husband also has cancer, is perhaps to get signed off by the Doctor. I really don’t like to play that card, as it leaves my colleagues to pick up the slack,  but as has been pointed out to me, and will be more challenging in your case, is that working full time, looking after the household duties/finances and of course the visits to and from the hospital will take more out of you than you think. I did it when David was initially diagnosed in acute kidney failure and i was mentally and physically drained. Add into the mix the phone calls and texts to keep everyone informed, this whole process is a full time job in itself. I ended up off work for a couple of weeks and was prescribed medication to help lighten the load.  Things were quite stable for me until we heard this week that SCT was a month away, and news, although brilliant for David, sent me towards a panic attack with all sorts of worries rattling around my head. You’ve got to look after yourself and your health..you need to be well enough to deal with all that’s ahead. While i would never advocate sick leave from work, I think that in this case, it will probably be the road I will take, and learn not to worry about work and what others think. Fingers crossed that you get things sorted out 🙂 x

     

Viewing 15 posts - 1 through 15 (of 19 total)

You must be logged in to reply to this topic.