Hi Daniel,
Sorry for the pain you are going thru. I am a Kaiser patient in Southern California, diagnosed MGUS in 2009 and SMM in 2013. This month for the first time, my hemo/onc ordered a PET/CT whole body scan. Luckily for me, it did not show myeloma activity, whew!
I defer to the much better informed members here, but my impression is that the MRI can show where hot spots of where myeloma cell activity is high, but not the actual bone damage (though I think you said your report did mention bone damage), and x-rays show bone damage only (and not with as much accuracy as PET/CT). But I think the PET/CT shows both, though when done for the whole body it is not at the highest resolution.
This was my first PET/CT - only given whole body xrays before and never an MRI. It was done in a huge "trailer" (really a truck) that the woman escorting me explained was only parked there one day a week - and this is at a large Kaiser medical center/hospital. I guess it is used on the other days at other Kaiser hospitals - there are many in our very populated area. They have CT scanning facilities inside the hospital - I had one done of my kidneys. That was a smaller machine that would not have done the whole body.
I wonder if it possible that access to particular machinery drives decisions about what to use for diagnosis. MRI should show the myeloma activity. I understand the frustration about watching numbers climb and being told it's OK. I have that too, watching my smoldering numbers slowly get worse.
Forums
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Carol of Eden - Name: Carol
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: MGUS 2009, SMM 2013
- Age at diagnosis: 50
Re: Tracking progression of bone damage
Maybe I'm missing something. However, doesn't Dr. Kapoor's posting here in the forum, "To PET or not to PET" (July 24, 2014), basically address most of the questions people have had in this thread about the pros and cons of the different imaging techniques for detecting lesions and tracking myeloma?
The posting is referred to regularly in discussions here about imaging, so I've just assumed everybody knows about it. But, at least to me, it seems from some of the questions that have been raised that many people don't.
So I thought I would point it out!
The posting is referred to regularly in discussions here about imaging, so I've just assumed everybody knows about it. But, at least to me, it seems from some of the questions that have been raised that many people don't.
So I thought I would point it out!
Re: Tracking progression of bone damage
Coach Hoke,
Your comments have served to increase my apprehensions about the radiation treatments being appropriate. These misgivings have been present from the beginning, but I couldn't come up with a logical reason for those misgivings. Now they seem to be snowballing. All treatment protocols to this point have been a joint decision between myself and my oncologist. I certainly didn't like all of them, but I did agree with all of them.
In this particular case, I just don't feel like I've been receiving accurate info. I'm going to make a last ditch effort to talk to the radiation specialist again today.
Thanks for your comments!
DR
Your comments have served to increase my apprehensions about the radiation treatments being appropriate. These misgivings have been present from the beginning, but I couldn't come up with a logical reason for those misgivings. Now they seem to be snowballing. All treatment protocols to this point have been a joint decision between myself and my oncologist. I certainly didn't like all of them, but I did agree with all of them.
In this particular case, I just don't feel like I've been receiving accurate info. I'm going to make a last ditch effort to talk to the radiation specialist again today.
Thanks for your comments!
DR
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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
Terry H, Thanks for the link to Dr. Kapoor's report, and as you surmised, I was unaware of its existence.
I have read his report now several times. Unless I've missed something, he falls short of stating that the combo of PET/CT can absolutely recognize active Myeloma lesions, though still stating that it is probably the best combo we have available currently. I'm wondering if others read his report the same way?
That being said, Dr Kapoor does state that all Myeloma patients should have a CT, and that the CT combined with the PET provide the best possible information. So, why was I not given a CT and/or a PET?
Thanks again to all
Daniel
I have read his report now several times. Unless I've missed something, he falls short of stating that the combo of PET/CT can absolutely recognize active Myeloma lesions, though still stating that it is probably the best combo we have available currently. I'm wondering if others read his report the same way?
That being said, Dr Kapoor does state that all Myeloma patients should have a CT, and that the CT combined with the PET provide the best possible information. So, why was I not given a CT and/or a PET?
Thanks again to all
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
Daniel-
A couple of years ago I had knee replacement surgery. While going for PT to rehab I started to experience severe pain in the lower part of the same leg where I had had the surgery. It was so severe that I often had to stop doing my exercises in therapy. When I mentioned it to my oncologist at my next follow-up appointment he sent me for a new skeletal survey and for x-rays of my lower legs. Unfortunately at the same time I was told that I had relapsed and began treatment again, almost 3 years post transplant.
The x-rays of my lower legs showed that I had lesions in both of my fibulae, the small bone next to the tibia. Because the left one was symptomatic I was sent to the radiation oncologist. He recommended 6 sessions of radiation to the left leg. I questioned him about the need for radiation at that point. He said that if I was having severe pain in the bone that wasn't responding to pain meds, that the radiation was used as palliative pain control. He also said that if it wasn't treated that I would likely fracture it in the not too distant future. Because of the bone that was affected, he said that if it fractured that they would probably recommend the removal of the bone because it didn't have a huge impact on function. It is often used for bone grafts in other parts of the body. After a lot of thought, I finally agreed to proceed with radiation. I have no pain in that area now unless I am sick or over exert myself physically. Then it just aches and responds to acetominophen for pain control.
I have lesions throughout my body and my oncologist's approach to treating them, other than Zometa infusions, is to leave them alone unless they become symptomatic with pain or I begin to have any other problems that could be traced to the activity/growth of the lesions, like nerve compression, collapsed vertebrae, etc. Other than the fractured arm that led to my treatment initially and the symptomatic fibula, all of my other lesions have remained stable or improved over the last 6 years. No new ones have developed according to the skeletal x-rays that I have periodically.
So, lots of ways to approach looking at bone lesions and when and how to scan and how to interpret the results. Interestingly skeletal surveys don't image below the knee or elbow because the other bones don't have much bone marrow. My oncologist had to write separate orders for the lower legs to be scanned.
Nancy in Phila
A couple of years ago I had knee replacement surgery. While going for PT to rehab I started to experience severe pain in the lower part of the same leg where I had had the surgery. It was so severe that I often had to stop doing my exercises in therapy. When I mentioned it to my oncologist at my next follow-up appointment he sent me for a new skeletal survey and for x-rays of my lower legs. Unfortunately at the same time I was told that I had relapsed and began treatment again, almost 3 years post transplant.
The x-rays of my lower legs showed that I had lesions in both of my fibulae, the small bone next to the tibia. Because the left one was symptomatic I was sent to the radiation oncologist. He recommended 6 sessions of radiation to the left leg. I questioned him about the need for radiation at that point. He said that if I was having severe pain in the bone that wasn't responding to pain meds, that the radiation was used as palliative pain control. He also said that if it wasn't treated that I would likely fracture it in the not too distant future. Because of the bone that was affected, he said that if it fractured that they would probably recommend the removal of the bone because it didn't have a huge impact on function. It is often used for bone grafts in other parts of the body. After a lot of thought, I finally agreed to proceed with radiation. I have no pain in that area now unless I am sick or over exert myself physically. Then it just aches and responds to acetominophen for pain control.
I have lesions throughout my body and my oncologist's approach to treating them, other than Zometa infusions, is to leave them alone unless they become symptomatic with pain or I begin to have any other problems that could be traced to the activity/growth of the lesions, like nerve compression, collapsed vertebrae, etc. Other than the fractured arm that led to my treatment initially and the symptomatic fibula, all of my other lesions have remained stable or improved over the last 6 years. No new ones have developed according to the skeletal x-rays that I have periodically.
So, lots of ways to approach looking at bone lesions and when and how to scan and how to interpret the results. Interestingly skeletal surveys don't image below the knee or elbow because the other bones don't have much bone marrow. My oncologist had to write separate orders for the lower legs to be scanned.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Tracking progression of bone damage
Hi Daniel,
I don't know what imaging they used earlier in your treatment, but from Dr.Kapoor's excellent summary, I get the idea that MRI is more sensitive in showing active myeloma lesions. PET/CT as usually done shows more of the body, not just spine and pelvis as MRI usually done for.
So since you were having back pain, it sounds like the MRI would be more sensitive for the affected area.
I don't know what imaging they used earlier in your treatment, but from Dr.Kapoor's excellent summary, I get the idea that MRI is more sensitive in showing active myeloma lesions. PET/CT as usually done shows more of the body, not just spine and pelvis as MRI usually done for.
So since you were having back pain, it sounds like the MRI would be more sensitive for the affected area.
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Carol of Eden - Name: Carol
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: MGUS 2009, SMM 2013
- Age at diagnosis: 50
Re: Tracking progression of bone damage
Glad you found the article helpful, Daniel.
I think it's useful in a discussion like this one to figure out what the goal is. Is it find and identify lesions? Or is it to find and identify places in the body where myeloma cells are particularly active?
Myeloma cells in the bone often cause bone lesions. However, as all smoldering myeloma patients know, you can still have detectable myeloma cells in the bones and not be getting lesions from them.
PET scans were designed specifically to "light up" cancer cells in the body so they can be seen better in a diagnostic image. Before you actually have a PET scan, you get an infusion or injection of a radioactive tracer. The tracer is chemically designed to be absorbed mainly by cancer cells. The scan highlights the parts of the body where the radioactivity is concentrated. In most cases, those will be places where there are cancer cells.
The way PET scans work, and what their purpose is, was driven home to me by an article I posted about in this forum thread last year:
https://myelomabeacon.org/forum/article-a-cancer-doctor-on-losing-his-wife-to-cancer-t3249.html
The article was written by a doctor whose wife had cancer. The doctor wrote:
"PET scans are like that, radioactive tracers that travel around the body and measure how much work different cells are doing. And cancer cells are very active workers. The scans are like the ground seen from the air at night. When there is no cancer they look like Idaho, all quiet. Really bad news looks like downtown Chicago or Phoenix."
So I think that, if you're goal is to determine if there is still myeloma detectable in your bones or elsewhere in your body, PET or PET/CT scans are the way to go.
Other methods probably make more sense if you want to check the status of existing lesions, or if new lesions have developed.
I think it's useful in a discussion like this one to figure out what the goal is. Is it find and identify lesions? Or is it to find and identify places in the body where myeloma cells are particularly active?
Myeloma cells in the bone often cause bone lesions. However, as all smoldering myeloma patients know, you can still have detectable myeloma cells in the bones and not be getting lesions from them.
PET scans were designed specifically to "light up" cancer cells in the body so they can be seen better in a diagnostic image. Before you actually have a PET scan, you get an infusion or injection of a radioactive tracer. The tracer is chemically designed to be absorbed mainly by cancer cells. The scan highlights the parts of the body where the radioactivity is concentrated. In most cases, those will be places where there are cancer cells.
The way PET scans work, and what their purpose is, was driven home to me by an article I posted about in this forum thread last year:
https://myelomabeacon.org/forum/article-a-cancer-doctor-on-losing-his-wife-to-cancer-t3249.html
The article was written by a doctor whose wife had cancer. The doctor wrote:
"PET scans are like that, radioactive tracers that travel around the body and measure how much work different cells are doing. And cancer cells are very active workers. The scans are like the ground seen from the air at night. When there is no cancer they look like Idaho, all quiet. Really bad news looks like downtown Chicago or Phoenix."
So I think that, if you're goal is to determine if there is still myeloma detectable in your bones or elsewhere in your body, PET or PET/CT scans are the way to go.
Other methods probably make more sense if you want to check the status of existing lesions, or if new lesions have developed.
Re: Tracking progression of bone damage
TerryH
Your explanation of PET/CT scan is exactly how I understand the procedure (I've had it twice and it is very impressive, the amount of detail in every organ in your body).
Coach Hoke
Your explanation of PET/CT scan is exactly how I understand the procedure (I've had it twice and it is very impressive, the amount of detail in every organ in your body).
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 have non-secretory myeloma with lots of bone damage, so this question has been very relevant to me. After much debate and some false steps, my team and I have concluded that regular PET/CT is the way to go.
MRI is excellent at showing ANATOMIC STRUCTURES - this means that it is very good at showing damage to bones. However, it tells you nothing about whether or not that damage is currently on-going. Any damage seen could be old or new - you don't know without some other kind of information, which could come from lots of different sources (direct comparison with previous MRI, M-spike, PET scan, biopsy, etc).
PET/CT is excellent at showing CURRENT METABOLIC ACTIVITY - this means that it is very good at showing clusters of tumor cells being very busy and active. However, PET/CT will also show metabolic activity from sources other than tumor, such as healing fractures or severe inflammation. (This is also why you can see metabolically active organs light up, like the heart and the gut).
So you can see that with both of these tests, you must have context to get the optimal interpretation of the results.
For example, when I was first diagnosed I had a huge active tumor in my sacrum bone. The bone damage could be seen on the MRI, and the metabolic activity of the tumor cells could be seen on the PET/CT. Then I had treatment with Revlimid/ Velcade/ dex, which worked (at first).
So if you were to repeat both of those tests after successful chemo, you would still see abnormal results on the MRI bc the bone damage is still there. However, on the PET/CT you wouldn't see metabolic activity in the location where the tumor had been, because the chemo killed those tumor cells.
So let's say you had an MRI after chemo, and a NEW area of bone damage was seen (that was not present on the first MRI). In the context of pain + rising M-spike, you would conclude this is a new tumor, even though you didn't see the metabolic activity, right?
MRI is excellent at showing ANATOMIC STRUCTURES - this means that it is very good at showing damage to bones. However, it tells you nothing about whether or not that damage is currently on-going. Any damage seen could be old or new - you don't know without some other kind of information, which could come from lots of different sources (direct comparison with previous MRI, M-spike, PET scan, biopsy, etc).
PET/CT is excellent at showing CURRENT METABOLIC ACTIVITY - this means that it is very good at showing clusters of tumor cells being very busy and active. However, PET/CT will also show metabolic activity from sources other than tumor, such as healing fractures or severe inflammation. (This is also why you can see metabolically active organs light up, like the heart and the gut).
So you can see that with both of these tests, you must have context to get the optimal interpretation of the results.
For example, when I was first diagnosed I had a huge active tumor in my sacrum bone. The bone damage could be seen on the MRI, and the metabolic activity of the tumor cells could be seen on the PET/CT. Then I had treatment with Revlimid/ Velcade/ dex, which worked (at first).
So if you were to repeat both of those tests after successful chemo, you would still see abnormal results on the MRI bc the bone damage is still there. However, on the PET/CT you wouldn't see metabolic activity in the location where the tumor had been, because the chemo killed those tumor cells.
So let's say you had an MRI after chemo, and a NEW area of bone damage was seen (that was not present on the first MRI). In the context of pain + rising M-spike, you would conclude this is a new tumor, even though you didn't see the metabolic activity, right?
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Tracking progression of bone damage
OK, I think I've got this. In my mind, I should have had a PET/CT. In my oncologist, as well as the radiation Drs. minds, the combination of new bone damage evidenced by the new MRI(relative to my last MRI back in early 2013), rising M-spike (albeit only 1.4), and back pain, were sufficient to conclude active Myeloma.
My concern is that the new bone damage and the pain could just as likely have been caused by wear and tear on already weakened vertebrae resulting from the existing lesion damage, and not by currently active Myeloma. In this scenario the pain would be a by-product of nerve impingement.
I get my medical team's point of view. My concern is that I may be receiving radiation when it's not currently necessary. I am still concerned that none of them thought it was important to have made this distinction.
I feel like I've taken over this thread, which was not my intent. I hope others are getting some value from my questions.
Many thanks to all that have responded.
Aloha
Daniel
My concern is that the new bone damage and the pain could just as likely have been caused by wear and tear on already weakened vertebrae resulting from the existing lesion damage, and not by currently active Myeloma. In this scenario the pain would be a by-product of nerve impingement.
I get my medical team's point of view. My concern is that I may be receiving radiation when it's not currently necessary. I am still concerned that none of them thought it was important to have made this distinction.
I feel like I've taken over this thread, which was not my intent. I hope others are getting some value from my questions.
Many thanks to all that have responded.
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
23 posts
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