I recently had a PET/CT scan to determine whether there was still evidence of active myeloma in my bones, despite the complete response indicated by my free light chain tests (I have kappa light chain myeloma). The reason I asked for the test is the persistence of my intense bone pain despite the complete response.
I have had numerous skeletal surveys and MRI's that have shown a large number of lytic lesions throughout my spine, hips, and ribs. The question was, is there still active disease?
The curious thing about the radiologist's report was its ambiguity. It reported uptake activity at the site of the lesions, but stated that this could be due to either normal osteoblastic activity, or to active myeloma.
I thought that a PET/CT would give you a definitive answer on whether there was active myeloma. Have others had the same experience of getting an ambiguous interpretation that does not settle the question, or is it true that uptake cannot be definitively attributed to myeloma rather than other processes? Could it be an issue of the radiologist's experience and skill?
Any insights or experiences that anyone can share would be very much appreciated.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Tracking multiple myeloma with PET/CT scans
Thanks, Multibilly.
That was indeed an excellent discussion, and I agree with you about Tracy's great input.
However, in the process of continuing to find an explanation for my intense bone pain despite evidence of complete response from the free light chain assay, I got some additional input from a well-known myeloma center that flatly contradicted the notion that all you could definitively tell from the PET/CT was evidence of increased uptake. According to this source, the pattern of uptake and its precise location with respect to any lytic lesions would distinguish active myeloma from osteoblastic activity quite readily.
That's why I went to the mine again, but in retrospect I should have appended my new post to the original thread.
Thanks again. I'm still interested in any other views/experiences concerning this issue, as it seems to me that if such distinctions cannot be made, the PET/CT – given its expense and the higher exposure to radiation it entails – would hardly be worth doing only to get an ambiguous result.
That was indeed an excellent discussion, and I agree with you about Tracy's great input.
However, in the process of continuing to find an explanation for my intense bone pain despite evidence of complete response from the free light chain assay, I got some additional input from a well-known myeloma center that flatly contradicted the notion that all you could definitively tell from the PET/CT was evidence of increased uptake. According to this source, the pattern of uptake and its precise location with respect to any lytic lesions would distinguish active myeloma from osteoblastic activity quite readily.
That's why I went to the mine again, but in retrospect I should have appended my new post to the original thread.
Thanks again. I'm still interested in any other views/experiences concerning this issue, as it seems to me that if such distinctions cannot be made, the PET/CT – given its expense and the higher exposure to radiation it entails – would hardly be worth doing only to get an ambiguous result.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Tracking multiple myeloma with PET/CT scans
I understand your frustration.
Why not get a second opinion from a different radiologist? I had very different interpretations of my original xrays when I was first diagnosed (the first radiologist was just about convinced I had lytic lesions and the second radiologist and some of his peers could not find any indication of lesions whatsoever ... go figure).
As I recall, you are in LA. I remember suggesting a different specialist in LA who could likely provide his own interpretation and could also likely point you to a radiologist that he uses and trusts. Or you go back to the "well known myeloma center" and have their staff review the PET/CT results?
Why not get a second opinion from a different radiologist? I had very different interpretations of my original xrays when I was first diagnosed (the first radiologist was just about convinced I had lytic lesions and the second radiologist and some of his peers could not find any indication of lesions whatsoever ... go figure).
As I recall, you are in LA. I remember suggesting a different specialist in LA who could likely provide his own interpretation and could also likely point you to a radiologist that he uses and trusts. Or you go back to the "well known myeloma center" and have their staff review the PET/CT results?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Tracking multiple myeloma with PET/CT scans
Multibilly,
I am pursuing a review of the PET/CT scan radiographs by a different radiologist, one whom I am told has a great deal of experience in this space.
The myeloma center I mentioned will do it also, but only in the context of my soliciting an overall third opinion from them on my diagnosis and treatment, in which case they will want all of my medical records. This then starts to get into insurance issues (I have already gotten a second opinion on my overall case.)
I have consulted with the specialist you recommended, just not on this point. Thanks for suggesting I go back to him on this issue – I will look into that.
I am pursuing a review of the PET/CT scan radiographs by a different radiologist, one whom I am told has a great deal of experience in this space.
The myeloma center I mentioned will do it also, but only in the context of my soliciting an overall third opinion from them on my diagnosis and treatment, in which case they will want all of my medical records. This then starts to get into insurance issues (I have already gotten a second opinion on my overall case.)
I have consulted with the specialist you recommended, just not on this point. Thanks for suggesting I go back to him on this issue – I will look into that.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Tracking multiple myeloma with PET/CT scans
I'll be curious what you find out.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Tracking multiple myeloma with PET/CT scans
I was under the impression, contrary to Tracy, that PET/CT scans are pretty accurate at tracing myeloma's response to treatment and looking for relapse.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Tracking multiple myeloma with PET/CT scans
Multibilly, coachhoke
Sorry this took so long. But the second radiologist – one experienced in tracking multiple myeloma through PET/CT scans – reported that it is quite easy to distinguish multiple myeloma FDG uptake from uptake by normal cells. Any FDG uptake by cancer cells is generally much more intense – showing up as significantly brighter – than uptake by normal cells, e.g., osteoblasts.
That is the whole premise behind tracking active myeloma activity in one's bones using PET/CT.
So, in my case, and apparently this is not unusual, the free light chain assay shows a complete response to my Cytoxan / Kyprolis / dex regimen by my kappa light chain myeloma, and yet there is still active myeloma in my bones. Not a lot of it, but it is still there, presumably munching away.
Sorry this took so long. But the second radiologist – one experienced in tracking multiple myeloma through PET/CT scans – reported that it is quite easy to distinguish multiple myeloma FDG uptake from uptake by normal cells. Any FDG uptake by cancer cells is generally much more intense – showing up as significantly brighter – than uptake by normal cells, e.g., osteoblasts.
That is the whole premise behind tracking active myeloma activity in one's bones using PET/CT.
So, in my case, and apparently this is not unusual, the free light chain assay shows a complete response to my Cytoxan / Kyprolis / dex regimen by my kappa light chain myeloma, and yet there is still active myeloma in my bones. Not a lot of it, but it is still there, presumably munching away.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Tracking multiple myeloma with PET/CT scans
Mr PH,
This is really good to know. Thanks for the follow-up.
On the complete flip side, I found this article to be interesting where one could have skewed FLCs, but then have no other indication of disease.
Abbi, K.K., et al, "Potential pitfalls of serum free light chain analysis to assess treatment response for multiple myeloma," British Journal of Haematology, May 2016 (abstract)
This is really good to know. Thanks for the follow-up.
On the complete flip side, I found this article to be interesting where one could have skewed FLCs, but then have no other indication of disease.
Abbi, K.K., et al, "Potential pitfalls of serum free light chain analysis to assess treatment response for multiple myeloma," British Journal of Haematology, May 2016 (abstract)
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
9 posts
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