[morwennaParticipant]

I had my SCT at the beginning of February this year. I’m wondering how long it took people to feel normal again after their SCT, if at all. My sense of taste is still very poor, I’m often fatigued, I catch lots of colds and generally feel “under the weather” most of the time. I do get short periods of feeling well, and it’s wonderful.

[morwennaParticipant]

By the way, I am 70 so know I was old to have a SCT

[glencParticipant]

Hi morwenna. I had my SCT in May. I’ve been very fortunate that I’ve recovered well but at 60 I’m 10 years younger. Also I haven’t started maintenance treatment yet so I know that will make a difference to things like fatigue. Are you taking Lenalidomide? I’m likely to start that after my haematology appointment in January and not looking forward to it because I am currently feeling great, back at the gym, hiking etc. My friend had her SCT at age 68 and had a harder time than me. She still feels some fatigue about 18 months on but is nevertheless doing great now. It affects everyone differently and can take time
Enjoy those periods when you feel good and I hope they become longer and more frequent time goes on. Happy New Year. X

[morwennaParticipant]

Thanks for your reply. I have been on Lenalidomide for 5 months now. It didn’t seem to change how I was feeling.
Wishing you a Happy New Year too.

Morwenna

[smithsterParticipant]

Hi Morwenna

My experience sounds similar to yours. Age 70, SCT last April, 6 months Lenalidomide.
I’m recovering slowly but still have days when I’m very tired.
My blood numbers are good and after a few coughs/colds I haven’t had anything for a couple of months.
No one seems to know whether the fatigue is the myeloma itself, the recovery from SCT or the Lenalidomide!

Consultants continue to suggest that the SCT is probably still the main issue

I’ve started taking the Lenalidomide at 6pm rather than bedtime because I was waking up feeling wiped out, and that seems to be helping a bit.

Overall though I would have taken my current state when diagnosed Sep 23

[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.

[Author]

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