[dishevelled]

no lesions or tumors but I have terrible back and hip pain

by dishevelled on Fri Apr 05, 2013 5:22 pm

I was just diagnose with multiple myeloma. I don't have a plan yet. I had my skeletal survey and MRI and everything is normal. Am I having back and hip pain that is unrelated to multiple myeloma? I walk with a limp and my ribs hurt to be touched. The Doctor told me that I only have 10 % plasma cells and no crab symptoms. He said because of a FISH test, I need to have treatment. I don't know what that means. Can I have pain from multiple myeloma without lesions or tumors. I have also had daily fevers for a year. Severe headaches are torture.

[Multibilly]

Re: no lesions or tumors but I have terrible back and hip pa

by Multibilly on Fri Apr 05, 2013 6:57 pm

Well, first I'm very happy to hear that you have no CRAB issues. Based on the limited data you've presented here, it seems like you are "smoldering" regardless of what your FISH data says. FISH is part of a chromosome test suite that tells you if you have any chromosome abnormalities in your myeloma cells. FISH tests are "prognostic" and are used along with other markers to tell you if you are at a higher risk for progression and/or how you might react to particular treatments.

The standard course of treatment for smoldering multiple myeloma has historically been to do nothing except monitor the disease until it progresses to symptomatic (CRAB develops). But there are studies and trials that are ongoing right now for starting chemo if you are smoldering and are "high risk" (again, FISH results are one of the factors doctors use to determine if you are high risk). A couple of folks on this site are participating in these trials and can comment on this and why they started treatment. As you dig into this, you will also find that the medical industry doesn't quite agree on what constitutes "High Risk" smoldering multiple myeloma, so it can be a bit subjective depending on whose standard you use to define "High Risk".

This might help you:

https://myelomabeacon.org/news/2013/01/23/mayo-pethema-risk-of-progression-smoldering-myeloma-more-disagreement-than-agreement/

http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2012-C-0107.html

https://myelomabeacon.org/forum/formal-risk-of-progression-classification-for-smoldering-multiple-myeloma-t1542.html


In any event, I'd really suggest getting a second opinion from a multiple myeloma specialist before undergoing any chemo...and talk with the others on this site that are doing the High Risk Smoldering multiple myeloma chemo trial (I'm sure it has a different name than this).

Regarding your pain, I'm not sure what to say if you have no lesions. Others may have ideas?

Good luck kiddo.

[Multibilly]

Re: no lesions or tumors but I have terrible back and hip pa

by Multibilly on Fri Apr 05, 2013 9:31 pm

Hey Disheveled, here is another thread that talks to your issue:

https://myelomabeacon.org/forum/bone-pain-t1019.html