[MrPotatohead]

Bone damage progression despite therapy response

by MrPotatohead on Thu Oct 22, 2015 9:23 am

Despite a good response so far to carfilzomib (Kyprolis), and monthly infusions of Zometa since last March, I continue to experience fractures, lytic lesions, and extreme bone pain. Most recently I have broken another rib, and a second skeletal survey shows new lytic lesions.

I am wondering how common this is. One thing that occured to me is that I may have more than one type of myeloma. My biopsy revealed kappa light chain myeloma, and I have been treated for that, with the results tracked using the free light chain assay test.

But perhaps I have another nonsecreting form as well, which would account for the continued bone deterioration. I suggested a PET scan to my oncologist, since I understand that test to show active colonies of myeloma in the bones, but he was not enthusiastic about the high radiation exposure.

Has anyone else had a similar experience with apparent progression of bone disease while myeloma numbers have come down, or thoughts as to what may account for it?

Thanks.

[Multibilly]

Re: Bone damage progression despite therapy response

by Multibilly on Thu Oct 22, 2015 10:56 am

I would suggest getting a second opinion from a different facility if your bone damage is still progressing and your doctor hasn't suggested a change in treatment based on these facts.

[JimNY]

Re: Bone damage progression despite therapy response

by JimNY on Thu Oct 22, 2015 12:41 pm

I agree with Multibilly, particularly since a second opinion is never a bad idea anyway.

Here are a couple of things you might want to think about as you decide what you want to do.

First, is it clear that you've experienced lesions that are very new? When was your last skeletal survey before the most recent one? Also, are you certain that the new lesions did not show up on the old survey?

Second, if I understand correctly, you've had trouble keeping your disease under control until you recently started treatment with Kyprolis. Is it possible that the new lesions that have been found developed while you were still having trouble controlling your myeloma -- that is, before you started treatment with Kyprolis?

I have to say that worrying about radiation exposure at this point, when you're struggling to keep your myeloma under control, seems like a second-order concern. That's why I wonder if your doctor has other reasons for not thinking that a scan would be a good idea at this point.

Good luck!

[MrPotatohead]

Re: Bone damage progression despite therapy response

by MrPotatohead on Fri Oct 23, 2015 8:42 am

I am plugged into a myeloma center for second opinions. I certainly agree that it is important to have that covered, but it's hard to tap into that for every issue that comes up.

What I am specifically curious about, but probably failed to state clearly in my original post, is whether one can, if diagnosed with kappa light chain multiple myeloma, also have a different kind of myeloma whose progression might be missed if one is looking at just the free light chain assay test to track cancer load, as is being done in my case.

JimNY, your points are all good and bear exploring. Thanks.

I am working on getting an orthopedic surgeon in place as part of my care team to critically look at these skeletal surveys. Right now, my oncologist gets a report, but I don't have direct access to the orthopedist who does the report, and in the case of the two surveys I had done - the first back in March when I was originally diagnosed, and the second about one month ago, in September - two different doctors did the reports. I think I need one set of informed eyes to look at these surveys and help me and my oncologist interpret them.

[NStewart]

Re: Bone damage progression despite therapy response

by NStewart on Fri Oct 23, 2015 8:03 pm

I can't answer your original question. That's something that an oncologist would answer for you. If you are going to see an orthopedist, I would suggest that you see an orthopedic oncologist. If there isn't one specifically called that where you are treated, or near you, look for a specialist who treats people with sarcomas. A regular orthopedist may not have the expertise to answer your questions or treat your bone problems. When my orthopedist learned that I had lesions in my femurs he referred me to a sarcoma specialist. Since then both the cancer center where I am treated and the orthopedic practice where I go have brought on orthopedic oncologists.

I also suggest that you get a 2nd opinion if your oncologist isn't giving you good reasons for not doing a PET/CT. I know that patients who are nonsecretors get them every 6 months to follow their disease. Radiation be damned if you are developing so many bone lesions even with your current treatment. It sounds like you need the scan and that you might need a change in your treatment regimen.

i hope you get some satisfaction soon,
Nancy in Phila

[MrPotatohead]

Re: Bone damage progression despite therapy response

by MrPotatohead on Sat Oct 24, 2015 6:57 pm

Thank you, Nancy.

I appreciate the suggestion of seeking out an orthopedic oncologist, and I think I will press for a PET/CT scan.