[Charlotte]

How to measure treatment response if only bones affected?

by Charlotte on Sun Jun 10, 2018 6:30 pm

My husband is recently diagnosed with myeloma (currently aged 48) and is halfway through treatment with Velcade, cyclophosphamide, and dexamethasone (VCD), to be followed by a stem cell transplant.

He has had less than 5% plasma in his bone marrow on each of 4 bone marrow biopsies, no M-spike, and only a slightly raised light chain ratio (approximately 8), which has already gone back to normal. However, he had extensive skeletal involvement with approx. 7 plasmacytomas and many more foci points throughout his spine, pelvis, ribs, collar bones, sternum, upper arms and upper legs.

He was only diagnosed with myeloma because of the bone involvement after he suffered back pain for a short period of time, which led to a spinal MRI. All pain went quickly, though, and it has only been temporary each time it reappears.

Does anyone know how to track response to treatment when the usual ways of measuring will not work? Do you rely on PET scans, or is it enough that the light chain ratio went back to normal quickly (which already suggests a complete response)?

I'm also concerned how they will monitor for a relapse in future; blood test and bone marrow biopsies offer little. How regularly should he have PET scans?

Any helpful tips would be greatly appreciated.

And just to confirm what so many people have said: this forum is wonderful. I've found so many answers to other questions I've had, which have helped immensely with our journey so far.

[stu1975]

Re: How to measure treatment response if only bones affected

by stu1975 on Thu Jun 14, 2018 3:02 am

Hi Claudia,

As always, I'm sorry to hear about your situation and your husband's diagnosis.

I am in a similar position myself, with my myeloma not really showing any of the normal markers in the blood or at bone marrow biopsy.

I was almost given the all clear after a solitary plasmacytoma was removed and all of my results looked fine. Even an MRI showed no activity.

However, a cautionary PET CT showed 4 active lesions in my ribs, sacrum, and sternum.

Since then, I have continued with my regular bloods on a 3 monthly basis, and my specialist and I have agreed that I will have a PET CT annually unless I have bone pain.

Clearly not an ideal situation, but it gives me at least some peace of mind.

It may be worth searching the forum for threads on nonsecretory myeloma as I believe your husband may fall into this category.

I hope this helps somewhat.

[Charlotte]

Re: How to measure treatment response if only bones affected

by Charlotte on Wed Jun 20, 2018 1:29 am

Thanks Stu. I had never looked at it in terms of nonsecretory myeloma, but having looked through the posts at the link you sent through, I now see my husband does fit the profile. Thanks so much for pointing me in the right direction. There is a lot of useful and relevant information there.

Good luck with your journey. Sounds like it has been going for a while.