[pkParticipant]

Hi,
My husband is going through his 1st relapse treatment with Carfilzomib/Lenalidomide/Dexamethasone and was wondering if someone can clarify a few points:
1. His Consultant has told him that Lenalidomide maintenance is not approved under NHS after stem cell transplant after 1st relapse, but only after 1st stem cell transplant. Is anyone currently going through this maintenance treatment after 1st relapse and if so, has it worked? It’s mind boggling that the NHS would continue with my husband’s expensive drug treatment if he doesn’t opt for stem cell transplant, but would not give him maintenance treatment after 1st relapse.
2. My husband had a 3 year partial remission after 1st stem cell and was wondering if it is possible to have a full remission after 2nd stem cell as his consultant has told him that the 2nd remission is usually for a shorter period compared to 1st remission. Initially my husband was thinking of staying on the 3 drug treatment rather than go through 2nd stem cell, but would welcome thoughts of someone who has stayed on the drug treatment and what has been their response.
3. The consultant has also told him that it is not advisable to go for more than 2 stem cell transplants. Does it mean that my husband will have to rely on new treatments which are all drug combinations and they more or less need to be taken regularly.

[raelParticipant]

Hi there. There are always lots of questions around treatment for Myeloma. From this Forum I’ve taken the message that the Myeloma journey is very much a personal one. Everyone responds differently to treatment. My husband was diagnosed with Myeloma in 2018. After intial chemotherapy treatment he had a SCT. Like your husband he had almost 3 years of remission. When I say remission, his paraproteins levels were exactly the same as before the transplant but were very stable. Unfortunately they didn’t collect enough cells for a second SCT. He is now going through chemotherapy again. Carfilzomib and dexamethasone. It’s early days but the results so far are excellent. His paraproteins levels are at the lowest they have ever been. His consultant is delighted, as are we! Hopefully that we’ll continue. As yet we don’t know what maintenance programme he will be on. He did have lenalidomid at the early stages of his chemotherapy and it didn’t really do much for him then. Anyway we are in a positive place at the moment. Husband is feeling good and once the Covid numbers reduce he will get out more. For him the drugs appear to be working better then the SCT. Hope things work out well for your husband.

[pkParticipant]

Thank you Rael for your detailed response. My husband has also responded well to the 3 drug treatment and has decided to opt for a 2nd Stem cell transplant. I don’t know if you can clarify how long your husband is expected to be on the current drug treatment.

[mulberryParticipant]

Two people in my local myeloma support group had longer after their second SCT than after their first. Like so many aspects of myeloma, we patients don’t all fit the average statistics.

[Author]

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