This topic contains 13 replies, has 5 voices, and was last updated by tony642 2 years, 3 months ago.
Hello. This is my first time on here. Looking for some information.
I have nearly completed my 6 cycles of VTD and am being encouraged to have a stem cell transplant.
I am interested in how people who have had a stem cell transplant coped with it.
I have been reading some of your comments about your experience with the stem cell transplant and they have been very useful.
Just wondering if anyone could tell me what they were able and unable to do and the support they needed when they went home from hospital? How difficult did they found it? What were the issues/challenges they came across? Any long term issues? How long did it take for them to be up and about out walking, driving, and living a normal a life as possible.
I don’t have any support at home which is making the decision more tricky
Really looking forward to hearing from you.
Many thanks
Hi SMJ, I know several people with myeloma in my local support group who live alone & have had SCT, so it is do-able.
We are, and have to be, told all the fairly common side effects, but you are as unlikely to have all of them, as none of them.
Most of us have some level of nausea and diarrhoea, lack of appetite and fatigue, especially when neutropenic. This is when the old stem cells have died, about a week after the melphalan infusion, before the transplanted cells really come into their own around day 12.
I remember feeling quite elated and energetic on day 12, when I could literally feel myself getting better hour on hour, and was discharged only a couple of days later. (However I had picked up a virus and ended up being readmitted for a further 5 days). So I was finally out on about day 22.
For the first few days at home I was shocked by my level of fatigue. I definitely benefitted from someone preparing all meals, doing washing etc for the first week at home. I definitely couldn’t have made meals from scratch, and spent all the time in bed, sleeping a lot.
After a week or so (c. day 29) I started improving day by day, and on day 37 I remember telling my consultant that I felt much better. By this stage I was up pottering around the house much of the time but still needing naps.
By day 60 I felt more energetic, and able to do more, although I still tired more quickly than normal.
By day 80 I was raring to get back to ‘normal life’, which I couldn’t as I still had low neutrophils, but I’d more or less stopped naps, resumed cooking, washing tasks- not so much cleaning (& as I write this I realise that my husband still 3 years later often does the hoovering!!). There were cleaning tasks that I worried were potential infection risks, if you can afford to get a cleaner to help for two or three months after the SCT that would overcome that risk.
On day 100 I got the ok to go on holiday (the joys of pre COVID days) & went off for what proved an active ‘normal’ holiday on day 102.
I am aware that I had a relatively easy ride through SCT. I did not have mucositis, the sore mouth that can accompany the procedure, & very little sickness compared to some.
I know someone who had a first transplant when her partner was alive & felt able to have another once she was living alone. It really is not impossible, but it would make life easier if you could identify someone to stay with you for the first week or so after discharge (which will be an unpredictable date, so some flexibility would be necessary).
Jane
Hello smj,
I can’t really tell you yet what happens after the SCT. My husband is currently in hospital and had the SCT this week. We have been told that he will probably be home in a week to 10 days’ time. That would be after 3 weeks in hospital. It would have been less, but he reacted badly to an antibiotic and they had to delay the start of treatment.
We have been given a booklet about what type of food to avoid for a month after discharge from hospital. I believe that there will be numerous post-transplant check-ups. We live near the hospital and I can drive, so depending on your personal circumstances, you might need to think about how to arrange things like that. Whilst he has been in hospital, I am not allowed to visit, but I need to pick up his washing and return clean laundry. Again – that might be something to discuss with your Transplant Team – how this would work for someone without home support.
Hopefully, someone will join this discussion with their personal experience, but I hope that some of what I said will help in a small way.
Very best wishes,
Lili
Hi SMJ, I am one of the forum volunteers. I think it is fair to say that we all react differently to some things, but if you have high-dose chemo (Melphalan for example) you can expect to have diarrhoea, nausea, and vomiting to some degree. You can also expect mucositis which is inflammation of the mucus membranes. I suffered quite badly with this, but I have been told if you suck ice cubes for half an hour before and after the chemo injection, it reduces the effects of it.
Your immune system will be compromised when you get home so you will be on a neutropenic diet. You will receive information from the hospital as to what you can or cannot eat until your immune system recovers. Do you have anyone that can do things like go to the shops for you, because to be honest, you will probably not feel like doing it yourself? Does your local council have a Ready for Anything
scheme or something similar where volunteers can give support such as that to those in the community who are not able to do it for themselves? I do that kind of volunteering and have been sent out several times to shop for someone, particularly when they were isolating during the pandemic.
I had STC nearly 3 years ago and my cancer has not been active since then, so for me, it was worth it. I hope you go through it the same with the minimum of side effects. Please let us know how you get on.
Regards, Tony
Thank you so much to those lovely people (Mulberry, lilib and tony642). The information you provided was really helpful and much appreciated.
Husband is hopefully being discharged on Wednesday. Something else I learned is that he must not do any gardening – he is the sort of person who will do it in spite of advice – so I have had to cut the lawns myself today so that he won’t be tempted!!
Hope that you have been able to make a decision, smj. All the best for your treatment.
Hi SMJ,
How are things going with you?
Regards, Tony
Hi
I have still not decided on whether to have a transplant but I am thinking about having my stem cell mobilisation and harvest after 6 cyles of VTD.
Just wondering if anyone has just had a harvest and not a stem cell transplant?
What harvest treatment did they have – Cyclophosphamide and then G-CSF or G-CSF with Plerixafor?
How did they feel after the harvest?
Did they recover quickly and were they back to how they were before the harvest. Were there any long term side effects?
Many thanks.
Hi SMJ,
My husband had both types of treatment for the harvesting of stem cells. What seems to have happened is that the Cyclophosphamide and G-CSF worked more quickly than expected in him so that by the time he went in to the hospital for apheresis, the optimum moment had passed, and they weren’t able to collect enough. Very frustrating as he spent two full days in the Mastermind Chair, unable to move about or do anything. So after about a week he had the Plerixafor at 10pm at night, and then I had to take him into hospital for 8am the next day to start the apheresis again. This time it was over in about 4 hours.
I recall that he had pains across the sternum on the day before the apheresis, but after it was all done, he was really back to normal pretty quickly.
I can’t answer your other question, because he has now had the Stem Cell Transplant.
Hope that helps in some way,
Lili
Hi Lilli
Thank you so much for your help.
I received my STC on 22 July 2022.(male 56) I was lucky as I had very little side effects. I’ve been home now for just over four weeks and I’m gradually starting to feel stronger. The fatigue when I first got home was incredible. I was utterly exhausted all the time. The doc says it can take 3-6 months before feeling well again but I’m already musing the idea of returning to work in November if my progress continues at the current rate.
That is very encouraging to hear, stoorty, and may you go from strength to strength. My husband had his SCT about a month after you, and it gives me hope that he may be feeling less tired in a matter of weeks. Can I ask how many check-ups and how often you have been checked since the transplant? I am a little concerned that monitoring seems to be fairly infrequent in our case. (Just had next appointment postponed for a month.)
Yes, it has been the same with me. I have seen the haemotology nurse once and last week I seen the haemotology doctor. If I have any questions I have a telephone number that gets me through to the nurses direct. My blood results are all positive and the doc says I’m in remission although I have still to get two rounds of chemo before the end of the year. If your husband is getting regular blood tests with no issues then sounds like he is progressing well, which is great.
Hi SMJ,
I had Cyclophosphamide and then G-CSF. I had virtually no side effects at all, apart from being very tired, which cleared up after a couple of days. If I were to need it doing again, I would not hesitate to have it done.
Regards, Tony
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