[emsieParticipant]

Hi

My hubby is currently receiving a second Auto SCT after achieving a poor response from his first SCT 16 months ago. He is very young (45 years old) and whilst the consultants couldn’t offer any assurances that a second attempt would yield a better response they were willing to try for him so we decided we have little to lose by giving it another bash. They did say that he would not be able to have an Allo transplant as he is too high risk.

I was looking at his treatment programme whilst sat at the hospital with him this week with little to do other than look at him and have carried out some research with the information on there – some of which is new to me and as a result of that research I am now unsure of the risk status of his myeloma.

He has stage IIIA IgG Lambda Myeloma with a 1q gain and IGH CCND1 Gene Rearrangement.

The hospital have always been upfront that he has high risk myeloma and that they were going to need to treat it aggressively but as I now understand him to have 3 genetic abnormalities and based on the research I have been doing I now question whether he is in fact ultra high risk??

Can anyone help me with this as would be good to have absolute clarity on what we are dealing with. Afraid I have trawled through lots of information but could not get an answer myself

Thank you

[galaParticipant]

Hi Emsie

I would not be able to comment on the particular genetic abnormalities, just I am surprised that high risk of myeloma is presented as contraindication for an allo transplant. It is the most aggressive treatment out there and high risk myeloma requires aggressive treatment. What would make sense is your husband’s general health and level of functioning. If he is not fit and his functioning is seriously impaired that the risk would be in him surviving the transplantation. This is something to keep in mind. Allo transplant is a high risk procedure, but it also gives the best change of longer progression-free survival.

[Author]

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