Myeloma

Hi again Suzy Suzy2504  and well done navigating across to the group - I am sure you will get great help from the group members 

Hi Suzy , welcome to the group . It's Sue here . Sounds like you and I have had similar journeys, just a different time line . I was diagnosed with MM late Aug 22 , 4 rounds of Dara DVD , stem cell collection and transplant first week April 23.

Stick with it ! It's a rollercoaster for sure but I'm in remission now and all is a little different but good ! Well worth it . 

This is a great place to ask questions , chances are some one will be able to help and always support . 

If I can help in any way please ask . Best wishes to you 

Sue x 

Hi Suzy,   Kevin  here,  AKA  Vespa,    26 months post stem cell trasplant  and leading a good life,  not quite as it was,  but a lot better than the alternative,  to get to the Stage of  SCT  you have come a long way,   we all now how that journey is,  for you and family,  that care for you.       i had my  Harvest and transplant in Birmingham,  then moved to a high care unit in Worcester Royal,  the care i had was terrific,   i am sure you have researched what to expect,  its a tough recovery,  but   we all got there,      many many things  we could all add,  but  one important thing/Advice i got  was,  as you recover,   keep moving,  get up   and move around your room,   i  paced myself and tried to increase my steps every day.     Please feel free to ask us anything you may feel you are unsure of,     hope you are feeling strong and ready for the next stage.   Best Wishes Kevin 

Hi Suzy 2504, I had a SCT at the end of October 2025 and, following the last two cycles of chemo I started maintenance eight weeks ago. I was only in hospital (QE Birmingham) for about ten days as I was lucky enough to have eight days of treatment as an outpatient whilst staying in their off site cottages. I was home by mid November and after a few pretty rotten weeks I started to recover and felt fairly normal by Christmas. I’m on maintenance now and apart from going through a barrage of vaccinations life is generally ok.

I can see in your statement you have asked a question about hair loss, time frame etc. Losing my hair was a pretty big concern for me and something I’d managed to avoid in previous cancers by cold capping. I was told that cold caps are not used with blood cancers. Coming up to the transplant I cut my long hair into a bob so I could mentally adjust to hair loss. Ten days after chemo and transplant I noticed lots of shedding and by the time I was discharged I could see thin patches. I knew I had to brave the shave as it was too distressing to see it just falling out all the time. It wasn’t pleasant but not as bad as expected as I was too preoccupied with feeling unwell. The little bits of stubble continued to fall out for a few weeks but by Christmas I could see the new hair coming through. I bought three great wigs pre chemo but never wore them. I found it much easier to cover with a baseball cap etc. I’ve been able to go out with no cap for the past six weeks and even coloured it.

We all seem to have slightly different journeys. I hope this answers one of your questions. I wish you well and a speedy recovery.