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Questions and discussion about smoldering myeloma (i.e., diagnosis, risk of progression, potential treatment, etc.)

When are bone loss diseases considered a symptom of myeloma?

by jhorner on Thu Sep 18, 2014 10:29 am

In a response in the forum discussion "Can myeloma-related bone lesions develop really fast?", Dr. Hoffman said

I think this thread brings up a few important points ...

In a significant minority of myeloma patients with bone disease, the bone ab­nor­mal­i­ty is osteopenia / osteoporosis without overt lytic lesions. This renders patients sus­cep­tible to fractures despite the absence of lesions on normal skeletal survey.

This has stimulated a question on when bone loss diseases have significance in precursor diseases.

Bone loss seems to be pretty common occurrence in precursor diseases, but Dr. Hoffman's recognition of these abnormalities as myeloma potentially indicates that some smoldering patients with osteopenia and osteoporosis may actually have active disease.

I'm just wondering when, if ever, these bone loss diseases are considered symptomatic of the myeloma, an identifiable CRAB criteria, and when they are not?

Best,
J

jhorner
Name: Magpie
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2013
Age at diagnosis: 49

Re: Bone loss diseases as symptoms of myeloma?

by Dr. James Hoffman on Thu Sep 18, 2014 5:30 pm

In general, osteoporosis alone is not considered formal 'end organ damage' in many cases. Particularly in post-menopausal women, for whom osteoporosis is fairly common, we do not use this criterion as an indication to treat as symptomatic myeloma.

In pre-menopausal women and in men, without other risk factors for osteoporosis, this CAN be con­sid­ered end organ damage and a reason to treat.

This is not an absolute and, in my opinion, a trial of bisphosphonate therapy in such patients (with close monitoring) is reasonable as well.

Can clarify further if needed.

Dr. James Hoffman
Name: James E. Hoffman, M.D.
Beacon Medical Advisor

Re: Bone loss diseases as symptoms of myeloma?

by jhorner on Fri Sep 19, 2014 12:49 pm

Thank you once again Dr. Hoffman. Just wondering if compression fractures or spontaneous fractures would give cause to osteoporosis alone being considered "end organ damage" and effectually a CRAB criteria?

Best
J

jhorner
Name: Magpie
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2013
Age at diagnosis: 49

Re: Bone loss diseases as symptoms of myeloma?

by Dr. James Hoffman on Sun Sep 21, 2014 7:51 am

When osteoporosis is significant enough to cause fractures, etc., this certainly needs to be factored in.

In general, for me to deem the osteoporosis multiple myeloma-related (and therefore an in­di­ca­tion for treatment), the primary question is: Does the patient have another potential reason to have osteo­porosis. The answer for post-menapausal women is yes. So it is harder to use osteo­porosis as an indication for therapy in that group.

This is another good example of how guidelines cannot and should not direct patient man­age­ment completely in this complicated illness. The doctor and the patient need to have a dialogue that is individualized to the patient's condition and mind frame and construct a treatment plan accordingly.

Dr. James Hoffman
Name: James E. Hoffman, M.D.
Beacon Medical Advisor

Re: Bone loss diseases as symptoms of myeloma?

by Toni on Sun Sep 21, 2014 10:21 am

You are so kind to explain all this to us, Dr. Hoffman, as I think for us MGUSers and smol­derers, this is one of those vague areas for which we don't have answers. I think you've helped considerably. Thanks for all you do for the myeloma community.

I truly appreciate the complexity of the myeloma continuum as I think that's why we have this forum – to try and understand these things. We'd all have to go to med school to begin to get a realistic grasp of it all, I think!

I have osteopenia. I'm 52 years old but premenopausal (everyone assumes I'm post meno­pausal). I have no reason to believe I'm somehow at increased risk since my M-spike is not high, I'm IgG kappa, etc. But I am prone to being ill quite a bit and have slightly suppressed IgM.

There was a mention earlier in this discussion of osteopenia. Is it safe to assume osteopenia really isn't a risk factor unless other factors are also there?

Toni
Name: Toni
Who do you know with myeloma?: self - MGUS
When were you/they diagnosed?: April 2014
Age at diagnosis: 51

Re: Bone loss diseases as symptoms of myeloma?

by Dr. James Hoffman on Sun Sep 21, 2014 10:41 am

Osteopenia in your circumstance is probably not enough to be deemed related to the MGUS. Again, the best decisions are made between a patient and their doctor taking into account more than can be reviewed in a forum like this.

Happy to help!

Dr. James Hoffman
Name: James E. Hoffman, M.D.
Beacon Medical Advisor

Re: Bone loss diseases as symptoms of myeloma?

by Toni on Sun Sep 21, 2014 10:49 am

Of course. Thank you!

Toni
Name: Toni
Who do you know with myeloma?: self - MGUS
When were you/they diagnosed?: April 2014
Age at diagnosis: 51

Re: Bone loss diseases as symptoms of myeloma?

by Recyclednew on Sat Nov 01, 2014 6:51 pm

I'm 36 years old (obviously premenopausal) and I have severe osteopenia (-2.1), hyper­cal­cemia, hyper­para­thy­roidism, severe anemia (I get IV iron treatments), immuno­defi­ciency (IgG and IgM), pro­teinuria, and dysautonomia. I'm IgA kappa type. I was diagnosed with MGUS over a year ago but the more I read and all the symptoms I have, I feel this diagnosis is way too con­serva­tive con­sidering all the symptoms and diseases that can be associated with myeloma.

I just had the dexa scan 2 weeks ago. Last October I was also tested and my score was -1.7 and now a year later it's -2.1. That seems extremely too rapid of bone loss to be ignored! Any thoughts or recom­menda­tions? Thank you.

Recyclednew

Re: Bone loss diseases as symptoms of myeloma?

by Multibilly on Sat Nov 01, 2014 10:27 pm

Recyclednew,

Are you working with a doctor that specializes in multiple myeloma? If you let us know what city your are in, folks on this forum can make recommendations as to where to find one.

Either severe osteopenia, hypercalcemia or anemia would qualify you as having symptomatic multiple myeloma, provided any one of those conditions has been determined to be due to multiple myeloma.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Bone loss diseases as symptoms of myeloma?

by Recyclednew on Mon Nov 03, 2014 1:31 am

I live in Pittsburgh PA. I haven't been able to find a really good doctor that truly specializes in myeloma and I feel like I'm being ignored and serious symptoms are being overlooked and dismissed. Any info on good myeloma specialist in or near my area would be greatly appreciated!

Thank you.

Recyclednew

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