[ninja performance]

Bone pain but nothing on x-rays

by ninja performance on Fri Dec 09, 2011 11:51 pm

Originally diagnosed at 8.9 g/dL (89 g/l) M-spike and 80% plasma cell percentage in the bone marrow, with rib, shoulder, and back pain. One of the original tests in trying to diagnose me was full head-to-toe x-rays. No spots / lesions showed up, and we were glad since that meant the disease did not soften / weaken my bones.

After 5 cycles Velcade, Revlimid, and dexamethasone (VRD), I am down to 0.1 M-spike and 2% plasma cell percentage. I have a consult at Johns Hopkins (Kimmel) December 15th about a possible stem cell transplant (SCT).

But ... my bones still hurt. Not as bad as when I was being diagnosed, but some or most of the spots still hurt. Some pretty bad. Stabbing pains at times. And they worsen with activity.

I guess my question is, how / why do I have the pain when nothing showed up on x-ray? My doctor thinks I had pain from the swelling of the bones, as the cancer was 80% inside the bones. But now that I am at 2%, is it from small cracks from the swelling? Is there damage that would have shown up, and still would, on an MRI that does not show on an x-ray?

Overall, I feel 100% better than at time of diagnosis. But this dang bone pain is relentless. Also, I don't take any pain meds. All of the narcotic pain meds make me sick / throw up / pass out, so I can't take them. Sometimes I will break down and take an Aleve (naproxen).

Thanks for the help,
Chris

[rumnting]

Re: Bone pain but nothing on x-rays

by rumnting on Sat Dec 10, 2011 11:06 am

All areas of myeloma bone disease does not show up on standard xrays. A PET scan would be more helpful.

Are you getting Zometa? My husband has more bone pain the first 2 weeks after a Zometa in­fusion. It is a common side effect.

[ninja performance]

Re: Bone pain but nothing on Xrays

by ninja performance on Sat Dec 10, 2011 11:12 am

rumnting,

Thanks for the response. I have not taken anything for my bones. Only chemo - VRD.

-Chris

[Stann]

Re: Bone pain but nothing on x-rays

by Stann on Sat Dec 10, 2011 2:33 pm

I agree with rumnting on both points.

When I was first diagnosed, I had no pain and x-rays showed no bone involvement. I then started the chemo and I was really achey for a few weeks. Then I had a PET scan which showed I had multiple small lesions in various places. So I started Aredia (like Zometa), which really made my bones ache for a few more weeks. But only after for the first infusion.

After a month or two, I had no more achiness.

Good job on your M-spike drop!

Stan

[Dr. Edward Libby]

Re: Bone pain but nothing on x-rays

by Dr. Edward Libby on Sat Dec 10, 2011 3:39 pm

Greetings Chris,

Although plain skeletal x-rays are the standard of care for the initial evaluation of multiple mye­loma, they can miss subtle bone fractures and subtle involvement with myeloma. In addition plain x-rays are not a good way to screen for osteoporosis (thinning of bone) caused by mye­lo­ma. Be­cause of that, the other imaging techniques (like MRI, CT/PET and bone densitometry) add a lot to our ability to find myeloma bone disease.

MRI of the bones of the body is more sensitive to bony disease and based on what you are telling me should be considered in your case.

In addition, obtaining a bone densitometry study could help your doctors to understand and treat the bone pain. Thinning of the bones from myeloma is hard to detect with regular x-rays and bone density studies are the state of the art.

If you have myeloma lesions on MRI that could not be seen with regular x-rays, or thin bones by a bone density study, then bisphosphonates (Aredia or Zometa) should be started and hopefully this would improve the pain and decrease the chances of further bone complications.

I wish you good luck and good outcomes in your journey with this disease Chris .

[ninja performance]

Re: Bone pain but nothing on x-rays

by ninja performance on Tue Dec 27, 2011 7:21 pm

Are there alternatives to Zometa?

-Chris