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

Regular imaging for smoldering myeloma - what type?

by DanaH on Sun Mar 16, 2014 9:49 am

Hi everyone,

What type of bone imaging would be best to do at regular intervals for those with smoldering myeloma? Full skeletal surveys, MRI's, or PET/CT w/ FDG, DEXA ?

Is this standardized or on more of an "as needed" basis?

I have had all of the above during my initial assessment. We now plan annual full spine MRI's without contrast and annual DEXA's.

Would like to hear what type of protocols others are following.

Thanks !

Dana H

DanaH
Who do you know with myeloma?: Myself, SMM as of 1/2012
When were you/they diagnosed?: 1/2012
Age at diagnosis: 54

Re: Regular imaging for smoldering myeloma - what type?

by Terri Michigan on Sun Mar 16, 2014 5:54 pm

I am not educated enough in this to answer, but would like to share my experience.

My first solitary plasmacytoma was found by having an x-ray of my hip. The spot they found 5 yrs later was my iliac bone by using a PET scan & recently found spots on my spine after having a MRI. The spots in my spine didn't show up on the PET scan but after radiation to my iliac I was still having back pain so they did the MRI which is when they found the back spots.

Seems like this is a tricky thing to catch. My blood counts have hardly ever even moved.

Terri Michigan
Name: Terri Michigan
Who do you know with myeloma?: Self
When were you/they diagnosed?: 2009
Age at diagnosis: 45

Re: Regular imaging for smoldering myeloma - what type?

by Mary T on Mon Mar 17, 2014 10:42 pm

Hello,

I have MRI's every 6 months for ongoing back, arm, and shoulder pain. I have a dexa every 2 years, and had a skeletal survey last year (the second one since 2006 diagnosis). I have had one PET scan a few years back.

Mary T

Re: Regular imaging for smoldering myeloma - what type?

by Multibilly on Tue Mar 18, 2014 8:17 am

I have been getting an xray skeletal survey every 6 months. If there were whole body MRIs available in Colorado, I would drop the xray skeletal surveys in a heartbeat and switch to whole body MRIs simply because of their increased accuracy and lack of radiation. Going forward, I will likely go to a 9 month xray cycle given that my numbers have stabilized over the last few months.

I had one PET/CT when I first got diagnosed and my first radiologist saw some bone lesions on my xray (turned out there were no lesions present whatsoever when other radiologists that looked at the xray confirmed this, as did the PET/CT).

I will probably only do a PET/CT again if my numbers pop up quite a bit or if something shows up on my xray....or if perhaps a couple more years go by and I just want to be sure if any lesions that have popped up that the xray didn't catch. I am distrustful of xrays given Dr. Landgren's recent findings that xrays didn't catch lesions in 30% of smoldering patients in a study he was conducting. But Xrays are really the only viable routine imaging option I have in Colorado since I definitely would not get a PET/CT every few months.

I have a DEXA scan done once a year to evaluate my bone density. A DEXA doesn't replace the need for any of the other imaging modes...and vice-versa.

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

Re: Regular imaging for smoldering myeloma - what type?

by DanaH on Tue Mar 18, 2014 4:47 pm

Hello All,

Thanks for your responses everyone !

Multibilly, I agree about xrays and the whole body MRI, especially after reading the most recent findings in yesterdays Beacon article.

https://myelomabeacon.org/news/2014/03/17/whole-body-mri-smoldering-myeloma-progression/

And right, DEXA is useful to assess bone density. I did understand that lumbar/hip DEXA's should be representative of body bone density, but I wonder if that applies to those w/ SMM or multiple myeloma? Any thoughts/info on that ?

Thanks again everyone,
Dana H

DanaH
Who do you know with myeloma?: Myself, SMM as of 1/2012
When were you/they diagnosed?: 1/2012
Age at diagnosis: 54

Re: Regular imaging for smoldering myeloma - what type?

by Blee on Wed Mar 19, 2014 3:39 am

My thoughts are that available imaging is suboptimal because:

Skeletal survey is easily available, but limited accuracy as it may require 30% destruction to visualize a lesion.

PET/CT involves significant radiation.

Whole body MRI is not widely available, and has limitations on specificity. However, it is very sensitive and does not have radiation exposure.

DEXA can be confusing especially for women and age-related osteoporosis.

I have had all of the above (within the past 6 months), and there is no specific plan to repeat in the near future. Seems like my doctor is going with following blood tests for now.

Blee
Name: Blee
Who do you know with myeloma?: me
When were you/they diagnosed?: Oct 2013
Age at diagnosis: 58

Re: Regular imaging for smoldering myeloma - what type?

by jbh on Mon Apr 21, 2014 7:18 pm

Hello,

I was diagnosed with MGUS in 2005 and the only follow up I had for the next 7 years was SPEP. It wasn't until I had my first bone marrow biopsy confirming progression that I had my first imaging. Full body MRI is not widely practiced in my area either, but after the skeletal survey showed moderate osteopenia, my oncologist scheduled separate MRI's with contrast for my back, (lumbar, sacral, cervical), my arms and my legs - entire axial skeletal system. I had 4 3-4 hour appointments to complete them.

There were some small questionable lesions, but I chose to watch and wait. Now that I have a baseline MRI, I feel better about monitoring moving forward. Here is the monitoring schedule he has me on...

Blood work every six months.
Imaging annually
Bone marrow biopsy only if there is cause.

Because smoldering myeloma can have up to 60% plasma cells in the marrow, he doesn't think it is necessary to use this for monitoring because it doesn't "currently" affect treatment options.

If the osteopenia gets progressively worse, then it may be considered organ failure. Apparently some multiple myeloma patients peppered bones start with osteopenia - a gradual thinning vs. punch holes. I think a baseline MRI with contrast is important and that, without this, you can't be sure you don't have active disease.

Best

jbh


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