[heyshParticipant]

My hubby diagnosed with IgA lambda MM beginning of year. He is on Cycle 2 VCD of 6 months. Saw Consultant today and she had full results. Diagnosed at Stage 3 (wish I had not asked) but she said he has responded extremely well to the chemo high light chains down from about 1000 to 27. Unfortunately due to his age late 70s and medical history not suitable for SCT. He is actually feeling a lot better although in quite a lot of pain in back and going to be fitted with a brace. However, cannot get my head around the Stage 3 diagnoses as most people seem to have had SCT to gain full remission over any length of time. Anyone else been in this situation without SCT,

[suew1960Participant]

Hello

Just thought I would say hi and say how sorry I am that you have had to seek out this forum on your husband’s behalf. I was diagnosed in 2018 and it is a terrible shock to deal with. There are so many appointments and just so much to cope with.

I too had spinal damage and wore a back brace for about four months. I cant say its very pleasant but you do get used to it. Most importantly it worked and one day I was able to throw it away! I hope your husband finds that the pain diminishes quite quickly as he progresses on with the chemo. If its any help at all as i understand it the staging in myeloma is not so important. You were braver than me I never asked!

Im not sure if you have come across a blog by a chap called Ian Crisp. I stumbled across it a while ago. I’m pretty sure he hasnt had a STC at all. He writes about his everyday activities and he puts me to shame quite honestly! He always seems to be very busy.
I guess what I trying to say is that things do get better. Its a long and winding road the myeloma journey. Trestment has come on tremendously. I find it helps to consider it a long term chronic condition that can be managed.

I wish you both the very best

Sue

H

[heyshParticipant]

Thank you so much for responding. I have been told not too worry about the staging as it is not so important as with other cancers and I wish now I had not asked as it is at the back of my mind although I am trying to stay on the positive side as I do not want hubby to think I am really worried. I am also on the fb Myeloma UK Support Group who have made similar reassuring comments and some people have not had STC and do seem to be doing well so that has made me feel better as I concerned that without this his chances were not as good. I hope that you continue to do well and thank you once again for taking the trouble to write. Sandy

[mulberryParticipant]

Welcome to the forum. Myeloma really earns it’s “multiple” name in so many ways, one being the sheer number of prognostic factors. Yes, stage 3 is less good than stage 1, but response to treatment is even more significant. The vast majority of us have a few negative prognostic factors and a few positive ones, certainly I have. Although SCTs are standard care in UK for young & fit enough patients, increasingly in USA myeloma specialists are very split about whether they should still be used in this era of more, and more effective, treatments. SCT is not without side effects,not only at the time but things like bone marrow damage. Although I had a SCT myself, and got over it very quickly, I’m not sure that I’d have another. In my local support group we have some older members who have not had SCTs and have had myeloma for a good many years. There really is every reason to be optimistic if your husband is starting to feel better, and his light chains are dropping so significantly. (I hope his spine improves too)

[heyshParticipant]

Thank you so much it is really uplifting to receive positive comments.I wish you well on your journey and hope you stay well xx

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