Thank you all for your replies which are all very helpful. Thank you also for your good wishes
Here is some more information about my particular situation. I am 75 years old and, until February 2021, I was active, fit and healthy and on no medication at all. I think that the discovery of myeloma came about by an unusual route. I had none of the usual CRAB symptoms but had an intense and persistent pain in my right thigh which was so bad that I needed a wheelchair. An MRI scan revealed that a growth on my L4 vertebra was compressing the nerves in the spinal cord. What I was experiencing as leg pain was referred from this compression. Within a few days I had an operation to remove the growth and the pain disappeared. The growth was analysed and proved to be myeloma and this was confirmed by a bone marrow extract.
I am told by my consultant that blood tests show that my paraprotein levels are consistently low and that they aren’t any help in monitoring progress. My own research tells me that this is typical of oligosecretaory myeloma. which is a rare form. I’m coming to the conclusion that the risk of myeloma to me is much more from bone damage than from a cmpromised immune system. But, of course, my immune system is being compromised by chemotherapy. So that’s all the more reason for not prolonging it unnecessarily.
I have asked whether a stem cell transplant is on the cards for me, but apparently not. I guess that I’m deemed to be too old.
I have also asked about the possibility of a break in my treatment but the cnsultant says that would only happen if the treatment was cuasing me physical harm and not merely discomfort.
I had an MRI scan just before my treatment started and another at the end of my sixth cycle, and, without being specific, my consultant told me that the result showed signs that the treatment was working. But these scans are six months apart so it’s not clear whether the benefit was gained early on in the treatment or whether it is continuing. My next MRI scan will be at the end of my 12th cycle. Clearly, I don’t want to stop treatment that is benefitting me, but we seem to be working blind. And, from what I have found out so far, the duration of my treatment is planned to take twice as long as what Blood Cancer UK and MyelomaUK say is typical.
As you may have gathered, my consultant is not very forthcoming with details and explanations. It’s taken me six months to work it out but it seems that I need to be armed with very specific questions and requests. And I’ve found that it’s best to email them in advance of the consultation. Otherwise I get vague and non-committal replies.
Thank you again for your replies and best wishes to you all
Norman
