Hi
I wonder if anyone could offer any help. My husband was diagnosed with MM last October. He underwent 3.5 sessions of DVLD. Unfortunately he suffered severe neuropathy and his mobility was severely impacted. He had a stemcell harvest but then the consultant said she felt he was too frail to undergo the transplant. His MM was in remission and having stopped the treatment of velcade and thalidomide his mobility has improved significantly. We went to see the consultant today and she said as he was so well he could now have the SCT. The trouble is we don’t know whether it is worth it. It has been great being treatment free for the last 6 months. We know the SCT will make him ill. Does anyone the advantage to having a SCT over staying as we are? His protein levels have been around 2 for the last few months. I would be grateful for any comments
There is a case for not having a stem cell transplant.
You may want to see this video:
Maintenance chemo is an alternative or extra way to keep your husband’s remission going for as long as possible. There are different chemo drugs that could be used (such as lenalidomide instead of thalidomide) that may have fewer side effects for him.
Hello Kar, I have lambda light chain myeloma diagnosed october 2023 and treatment started march 2024. I was certain that a stem cell transplant was the way to go and told my consultant that when they wanted to start treatment. More than one consultant at my clinic (Leeds St James’s) advised me that DRd was a better choice for me taking outcomes and risks as well as effective treatment into account. To be totally fair they said they would go ahead with stem cell transplant if I insisted but they advised that DRd was better for me ( I was 70 with no other serious illness ,now 71 ). So you can see why it’s such an individual choice regarding both age and myeloma type.
Now on cycle 10/11 DRd has its downsides diarrhoea (lenalidamide caused bile acid malabsorption, now effectively controlled with cholecystramine) and the well documented ups and downs of dexamethasone.
I’m so glad I followed my consultants advice about treatment and count myself fortunate to attend on of the top centres in the country.Its such an individual choice and journey so I wish you and your husband well . Keep looking on the forum some incredible people post about their own experiences on here.
Regards Colin
Thanks for your comments. It is such a difficult decision. As my husband is 70 this is the last chance he will have of having a SCT and if we don’t go ahead and suddenly he relapses we will feel gutted we didn’t give it a try. However he is feeling good at moment and if he goes ahead and has 6-12 months of not feeling good and it makes no difference then again we will feel gutted. I wish we had a crystal ball x
