Hi Clare, I don’t think you can ask offensive or stupid questions, a good doctor will try to answer whatever questions you have. It may be worth ringing the Myeloma UK nurse too, Ellen is very knowledgeable, kind and helpful.
As you’ve found myeloma is a very complex disease, or collection of very rare diseases which does impact on responses to treatments and your husband is not unique in having a myeloma that does not respond to the first few treatments.
If I was your husband I would ask for a second opinion referral to a myeloma specialist (if he is not already seeing one). The new myeloma treatments target myeloma in different ways and in trials work for refractory myeloma. Many of the physical and physiological consequences of myeloma enormously improve once myeloma is under control, so don’t lose hope.
My family history of cancer made me wonder if I (we) have BRAF gene, possible but not common in myeloma, so I asked my consultant to refer me to a geneticist, which I found helpful even though the geneticist declined doing full genetic testing at this point. This route may be an option for your husband?
There are an enormous number of genes potentially involved with myeloma, the most commonly mutated pathway being RAS-MAPK pathway, 57% of us patients have mutations of NRAS,KRAS,BRAF, NFI or EGFR genes at some point, so it may be useful to know whether your husband has one or more of these.
