I wonder if anyone knows what ways are used, or can be used, for measuring the progression of bone damage caused by multiple myeloma.
I am thinking of something besides periodic skeletal surveys. And something more precise than calcium blood levels.
For example, I have the kappa light chain version of multiple myeloma, and my oncologist measures my level of kappa free light chains monthly to determine the effectiveness of my therapy. Is there an analogous way to measure the bone destroying level of activity of the cancer?
The reason I ask is that I am currently on induction therapy with Revlimid, and my oncologist is pleased with my response, using the kappa light chain level test. But isn't it possible for bone destruction to progress rapidly, even if my light chain levels are on a downward trend? Also, it seems to me that knowing the pace of continuing bone damage would be useful in deciding how aggressive treatment should be.
In my case, the bone damage and its painful consequences are my major symptom, and I surmise from reading many posts that my situation is quite common.
Forums
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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 progression of bone damage
My onc has me do a bone density test (DEXA scan) periodically to make sure that my I'm not developing oteopenia or osteporosis as a result of my smoldering multiple myeloma In fact, I just had a DEXA scan done today.
He then couples the DEXA-scan monitoring with periodic imaging that alternates between skeletal surveys and PET/CTs (and the radiologist compares the latest images with the previous images and always comments on any changes).
Interestingly, my bone density has steadily improved since my smoldering myeloma diagnosis about 2 1/2 years ago (the DEXA-scan machine plots the trends of all my various density measurements over the past 2 1/2 years, and the technician hands me a nice printout of these trends as I leave the imaging facility).
I don't know if my improvement in bone density is due to a better diet, tons of hiking, and starting Vitamin D3 / K2 supplements since the time of my diagnosis? Or maybe it is just a false trend due to the imprecision of the DEXA scan itself, and my bone density really isn't improving?
He then couples the DEXA-scan monitoring with periodic imaging that alternates between skeletal surveys and PET/CTs (and the radiologist compares the latest images with the previous images and always comments on any changes).
Interestingly, my bone density has steadily improved since my smoldering myeloma diagnosis about 2 1/2 years ago (the DEXA-scan machine plots the trends of all my various density measurements over the past 2 1/2 years, and the technician hands me a nice printout of these trends as I leave the imaging facility).
I don't know if my improvement in bone density is due to a better diet, tons of hiking, and starting Vitamin D3 / K2 supplements since the time of my diagnosis? Or maybe it is just a false trend due to the imprecision of the DEXA scan itself, and my bone density really isn't improving?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Tracking progression of bone damage
My doctor also orders density scans every two years, I believe. In my case, my scans have shown increased osteopenia, but I believe this is still not that bad. I did the bone med pamidronate (Aredia) for two years after my diagnosis, and I think this medication helped control bone damage from getting worse and even helped heal it.
My treatment / transplant was in 2010 and currently I'm just in a watch-and-wait and have done no further treatment. I get a bone survey every year. And, if more symptoms come up, targeted imaging (i.e., spinal MRI every so often).
I'm in Canada, so our treatment tends to involve less routine imaging then south of the border
My treatment / transplant was in 2010 and currently I'm just in a watch-and-wait and have done no further treatment. I get a bone survey every year. And, if more symptoms come up, targeted imaging (i.e., spinal MRI every so often).
I'm in Canada, so our treatment tends to involve less routine imaging then south of the border
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Tracking progression of bone damage
I believe that the best way to track progress of bone damage from myeloma is with a PET/CT imaging technique. This technique shows if any of the lesions are active or not. MRI's, X-rays, bone density tests DO NOT show if the lesions are active, or not.
However the cost of the PET/CT test, and the amount of exposure to radiation, is a whole other story.
Coach Hoke
However the cost of the PET/CT test, and the amount of exposure to radiation, is a whole other story.
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Tracking progression of bone damage
I agree. Bone density scanning is such a crude and misleading measure. I myself read nothing into such trends unless they are truly significant, such as after taking Zometa.
I'm no doc, but am a scientist, and IMHO, smoldering myeloma is a serious disease and will not simply go away or get better. Indeed, it almost always will progress, reflecting silent but sinister carcinogenic processes evolving over time. I wonder whether nipping it in the bud early is the best prospect for a cure or at least very long-term survival.
I'm no doc, but am a scientist, and IMHO, smoldering myeloma is a serious disease and will not simply go away or get better. Indeed, it almost always will progress, reflecting silent but sinister carcinogenic processes evolving over time. I wonder whether nipping it in the bud early is the best prospect for a cure or at least very long-term survival.
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JiminSD
Re: Tracking progression of bone damage
Hi Jim,
Under the "old" definition of smoldering myeloma – the one before the change in the diagnostic criteria for multiple myeloma last year – about 20 percent of people diagnosed with smoldering myeloma did not progress to symptomatic disease within 20 years of diagnosis.
The new diagnostic criteria moved about 20 percent of people who previously would have been defined as having smoldering myeloma at diagnosis into the "symptomatic" myeloma category.
With some simple assumptions and some simple math, that means that someone diagnosed with smoldering multiple myeloma today, under the new diagnostic criteria, has a one in four chance of not progressing to symptomatic disease within 20 years of diagnosis.
Given that we don't yet have a cure for myeloma, and given that there is no definitive evidence thus far that early treatment of smoldering myeloma with existing treatments yields an overall survival advantage, can we justify treating ALL smoldering myeloma patients when one quarter of them would probably do fine without treatment?
It's probably worth adding that a curative treatment regimen for smoldering myeloma patients will probably be intensive – not some walk-in-the-park, single-drug therapy. Also, "curing" myeloma by treating it when it's in its smoldering stage won't help the tens of thousands of people who are diagnosed each year when the disease has reached the symptomatic stage.
Under the "old" definition of smoldering myeloma – the one before the change in the diagnostic criteria for multiple myeloma last year – about 20 percent of people diagnosed with smoldering myeloma did not progress to symptomatic disease within 20 years of diagnosis.
The new diagnostic criteria moved about 20 percent of people who previously would have been defined as having smoldering myeloma at diagnosis into the "symptomatic" myeloma category.
With some simple assumptions and some simple math, that means that someone diagnosed with smoldering multiple myeloma today, under the new diagnostic criteria, has a one in four chance of not progressing to symptomatic disease within 20 years of diagnosis.
Given that we don't yet have a cure for myeloma, and given that there is no definitive evidence thus far that early treatment of smoldering myeloma with existing treatments yields an overall survival advantage, can we justify treating ALL smoldering myeloma patients when one quarter of them would probably do fine without treatment?
It's probably worth adding that a curative treatment regimen for smoldering myeloma patients will probably be intensive – not some walk-in-the-park, single-drug therapy. Also, "curing" myeloma by treating it when it's in its smoldering stage won't help the tens of thousands of people who are diagnosed each year when the disease has reached the symptomatic stage.
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JimNY
Re: Tracking progression of bone damage
I agree with what Coach Hoke said about the info that one gets from a PET scan. Unfortunately, if you are on Medicare, they will only pay for a limited number of those, even if you are a nonsecretory and need the scan to track your disease.
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Tracking progression of bone damage
Thanks so much, everyone, for sharing your knowledge and opinions. I really appreciate it.
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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 progression of bone damage
This question is particularly timely for me. I am currently undergoing radiation for "active myeloma" and lesions in my upper thoracic. The path that finally led to this treatment has been frustrating and convoluted.
I am about 2 years post autologous stem cell transplantation (ASCT). About 3 months ago, my M-spike became quantifiable for the first time since the transplant. In addition, my IgG (I'm IgG kappa light chain) kept increasing to the top of the normal range, while my IgA and IgM were well below the bottom of the normal range, and my RBC was just below the bottom of the normal range.
Other than that, all my numbers were good, and my oncologist / hematologist didn't seem to think there anything to worry about. But I was worried. I had developed a pain in my mid back, again around the same timeframe, that I had interpreted as a muscle spasm except for the fact that it didn't get better, and it didn't go away.
I had this mystery muscle spasm looked at, but because there was no pain when compression was applied, my doctor didn't think much of it. Then between 3-4 weeks ago, the pain levels increased to where my usual pain med regimen was not effective and taking in a full breath became increasingly difficult. From the time that I began complaining in earnest until I finally got an emergency MRI, and then got those MRI results reported, was another 2 plus weeks.
I was then referred to a cancer treatment center outside of the Kaiser system that subs those treatments for Kaiser. My wife and I were told by their specialist that my myeloma was again active and I would, therefore, receive 12 radiation treatments.
I had looked at the MRI scans and read the attached report. I am not a doctor and I'm about as far from an expert as one can get, but I couldn't see anything in the scans or the report that demonstrated active myeloma. Don't get me wrong, there was new bone damage, compression, nerve involvement, etc., and given my history, active myeloma is a pretty safe bet.
What has vexed me is, why couldn't they do a test that would demonstrate active myeloma with certainty? The answer, so I was informed by the radiation cancer specialist and my own oncologist/hematologist, is that there is no test that could make that determination.
So imagine my surprise to read coachhoke's comment: " the best way to track progress of bone damage from myeloma is with a PET/CT imaging technique. This technique shows if any of the lesions are active or not. MRI's, X-rays, bone density tests DO NOT show if the lesions are active, or not."
I have always been impressed with my doctor's level of knowledge and expertise. And the radiation specialist is considered the best in his field, at least locally. So why are neither of them aware of the ability of PET/CT scans to demonstrate the activity, or absence of activity, of lesions?
Thanks and Aloha
Daniel
I am about 2 years post autologous stem cell transplantation (ASCT). About 3 months ago, my M-spike became quantifiable for the first time since the transplant. In addition, my IgG (I'm IgG kappa light chain) kept increasing to the top of the normal range, while my IgA and IgM were well below the bottom of the normal range, and my RBC was just below the bottom of the normal range.
Other than that, all my numbers were good, and my oncologist / hematologist didn't seem to think there anything to worry about. But I was worried. I had developed a pain in my mid back, again around the same timeframe, that I had interpreted as a muscle spasm except for the fact that it didn't get better, and it didn't go away.
I had this mystery muscle spasm looked at, but because there was no pain when compression was applied, my doctor didn't think much of it. Then between 3-4 weeks ago, the pain levels increased to where my usual pain med regimen was not effective and taking in a full breath became increasingly difficult. From the time that I began complaining in earnest until I finally got an emergency MRI, and then got those MRI results reported, was another 2 plus weeks.
I was then referred to a cancer treatment center outside of the Kaiser system that subs those treatments for Kaiser. My wife and I were told by their specialist that my myeloma was again active and I would, therefore, receive 12 radiation treatments.
I had looked at the MRI scans and read the attached report. I am not a doctor and I'm about as far from an expert as one can get, but I couldn't see anything in the scans or the report that demonstrated active myeloma. Don't get me wrong, there was new bone damage, compression, nerve involvement, etc., and given my history, active myeloma is a pretty safe bet.
What has vexed me is, why couldn't they do a test that would demonstrate active myeloma with certainty? The answer, so I was informed by the radiation cancer specialist and my own oncologist/hematologist, is that there is no test that could make that determination.
So imagine my surprise to read coachhoke's comment: " the best way to track progress of bone damage from myeloma is with a PET/CT imaging technique. This technique shows if any of the lesions are active or not. MRI's, X-rays, bone density tests DO NOT show if the lesions are active, or not."
I have always been impressed with my doctor's level of knowledge and expertise. And the radiation specialist is considered the best in his field, at least locally. So why are neither of them aware of the ability of PET/CT scans to demonstrate the activity, or absence of activity, of lesions?
Thanks and Aloha
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Tracking progression of bone damage
Early in my treatment my local oncologist (not a myeloma specialist) sent me for radiation treatments for my lytic lesions in my back (spine based on two previous MRIs). My myeloma specialist said let's do a PET/CT SCAN first. So the PET/CT scan showed that none of the lesions were active and therefore it would make NO sense to have them irradiated; the radiologist where I was to go to have the treatment agreed that radiation , in my case, made no sense.
Coach Hoke
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
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