[lakedisParticipant]

I had SCT in April 2023, close to my 74th birthday. I was largely back to normal life 3 or 4 months later. After the SCT I had 2 more cycles of daratumumab etc and started on 10 mg lenalidomide daily in August 2023. I get a lot of painful cramps and rigidity in my hands in particular, especially towards the end of each 3 weeks. It also seems to have some unpredictable effects on my digestive system. In the winter of 2023-24, I had three colds/chest infections with only a short break between each one. With each infection, I had a really bad cough for 2 -3 weeks. I put this down to the after effects of SCT. This winter I’ve had only one such infection (touch wood!). I’ve been in remission for nearly 2 years now and long may it continue that way! To pick up other points made here I’ve done lots of travelling but all within the UK so far.

[lakedisParticipant]

Hi mriampositive. I can’t answer your question definitively but I can say that when I went into hospital in April for my SCT I wasn’t constipated but I rapidly became so. Whether it was anxiety, melphalan or something else I’m not sure. I received the melphalan on my first afternoon in the hospital and then had the stem cells 2 and 3 days later. I continued to feel constipated until around my 6th day in hospital (2 days after the second day of stem cell treatment) and then diarrhoea started to kick in which continued (not too badly) for about 5 days. Hope that helps.

[lakedisParticipant]

Hi. I’m 74 and was diagnosed with myeloma at the beginning of Sept 2022. After the usual blood samples and bone marrow biopsy to confirm it I started treatment in Oct 2022 with 4 28 day cycles of Daratumumab, Bortezomib, Dexamethasone and Thalidomide. I had quite a lot of side effects. The main reason for replying here is that I came home from my stem cell treatment 3 days ago so this is ‘hot off the press’. I had my stem cells harvested over 2 days about 2 weeks before the SCT. I also had a consultant appointment a few days beforehand to sign consent forms etc. I must admit I was apprehensive after that with all the stuff about 5% end up in intensive care and 1 in 300 don’t survive or whatever but I duly turned up at the hospital on 18th April. This was quite difficult for me because I live 100 miles from the hospital and had never spent a night in hospital in my life. I was given the melphalan that same afternoon and then received my stem cells in 10 bags over 2 days (20th/21st April) – it took about 20 minutes per bag. It seemed to go according to plan with my neutrophils heading towards zero over the next few days and then starting to recover on 2nd May. On 29th April I had an elevated temperature so I was immediately put on an intravenous antibiotic, meropenem. My temperature didn’t stay elevated for very long and I was taken off the antibiotics after 3 days. If I had an infection, I have no idea what it was. I was able to leave hospital on 6th May (18 nights in total). I felt nauseous on and off and had no appetite (the food didn’t help) and I had problems with constipation and then diarrhoea. I managed to cope reasonably well with the noisy interruptions of ‘obs’ in the middle of the night and alarms from infusion pumps but found ear plugs and a thick mask useful. My hair has fallen out (I didn’t have much). I thought I might have lost a bit of weight but in the event it was only 3 or 4 pounds. My appetite seemed to improve as my neutrophils climbed back to normal levels and I have eaten reasonably well since I got home. I think I must have been positively euphoric on getting out of hospital and felt OK for a day or two but am now feeling pretty tired even after a good night’s sleep. I can’t say I enjoyed the whole experience but it wasn’t as bad as I thought it could have been. Happy to answer any further questions if I can.

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