I have a question sparked by the discussion in the thread "How to measure disease progression in smoldering myeloma?".
I also have been smoldering for 9 years. I have had one round of radiation for a plasmacytoma in my hip. My M-spike has been slowly increasing for the past three visits, from 1.5 to 1.9 g/dL. My IgG went up about 500 points.
When I had radiation, my numbers had dropped some.
Now my question is. Do I worry about back, rib and sternum pain that is worse at times?
I also have a weird burning sensation that starts in upper sternum and goes across my chest.
I have dropped my hematologist a note. Sometimes I feel as though he thinks I worry too much.
Is there a chance I am progressing?
My kappa / lambda free light chain ratio is normal.
Forums
Re: Smoldering, wondering if I am progressing
How frequently do you go in for tests? Have you told your physician of your concerns re: your sternum? And when are you scheduled to go in next?
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Smoldering, wondering if I am progressing
Camille,
Some docs recommend getting routine skeletal surveys as part of monitoring SMM (my local onc falls into this camp). Others suggest only imaging for smoldering myeloma monitoring purposes when there is new bone pain and/or serological changes warrant it (my primary multiple myeloma specialist falls into this camp). I end up splitting the difference and get imaged routinely, but less frequently than what my local onc suggests (and I will be alternating doing a PET/CT with a bone survey).
I would think that any new bone pains like the ones you've mentioned would be a good reason to get imaged, especially since your markers are increasing. Your M-spike change is not that large of a swing, but the change is also not trivial (but really, only a doc can say this for sure).
When was the last time you got imaged?
Have your individual FLC values remained unchanged (some would argue that the FLC ratio is good for diagnosis, but not necessarily the key FLC marker you should be using for ongoing monitoring).
What about your calcium level? Although calcium levels don't always go up when you have multiple myeloma bone damage that is occurring, it definitely can in some folks.
If you didn't see this earlier article regarding imaging, you might want to read it if you are going to get re-imaged.
https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html
Hope this helps ... and I wouldn't worry about appearing to your doc as though you are worrying too much about your disease. Better safe than sorry, especially if you are having new bone pain.
Some docs recommend getting routine skeletal surveys as part of monitoring SMM (my local onc falls into this camp). Others suggest only imaging for smoldering myeloma monitoring purposes when there is new bone pain and/or serological changes warrant it (my primary multiple myeloma specialist falls into this camp). I end up splitting the difference and get imaged routinely, but less frequently than what my local onc suggests (and I will be alternating doing a PET/CT with a bone survey).
I would think that any new bone pains like the ones you've mentioned would be a good reason to get imaged, especially since your markers are increasing. Your M-spike change is not that large of a swing, but the change is also not trivial (but really, only a doc can say this for sure).
When was the last time you got imaged?
Have your individual FLC values remained unchanged (some would argue that the FLC ratio is good for diagnosis, but not necessarily the key FLC marker you should be using for ongoing monitoring).
What about your calcium level? Although calcium levels don't always go up when you have multiple myeloma bone damage that is occurring, it definitely can in some folks.
If you didn't see this earlier article regarding imaging, you might want to read it if you are going to get re-imaged.
https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html
Hope this helps ... and I wouldn't worry about appearing to your doc as though you are worrying too much about your disease. Better safe than sorry, especially if you are having new bone pain.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Smoldering, wondering if I am progressing
My calcium never went up with my hip lesion. None of my labs changed before. The only imaging I have had done since my radiation is MRI of hip and a few hand and hip xrays. Which the xrays have NEVER showed anything.
Never had a complete MRI except for PET scan. The MRI of my back showed a small lesion on my spine. But PET showed nothing, so they said nothing there, that the radiologist was looking too hard.
Never had a complete MRI except for PET scan. The MRI of my back showed a small lesion on my spine. But PET showed nothing, so they said nothing there, that the radiologist was looking too hard.
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Camille
Re: Smoldering, wondering if I am progressing
Actual the MRI was of my hip. The back was an incidental
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Camille
Re: Smoldering, wondering if I am progressing
So, how long ago was the MRI and PET/CT? I assume the new pains you are experiencing happened since then, right?
Note that finding places that do full body MRIs is really hard. So a PET/CT is a good choice (but again, read the previous article to get a good idea of which imaging modality might make best sense in your case).
Note that finding places that do full body MRIs is really hard. So a PET/CT is a good choice (but again, read the previous article to get a good idea of which imaging modality might make best sense in your case).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Smoldering, wondering if I am progressing
The last PET was two years ago. I put in message to my doctor. He has 48 hours to respond. So I should hear from him by Friday.
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Camille
Re: Smoldering, wondering if I am progressing
Best of luck to you. Let us know how things turn out.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Smoldering, wondering if I am progressing
Good for you Camille. It might not be anything, but the nagging worry is enough to make us crazy. I'm sure your physician will get back to you and I hope all is well. Let us know please.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Smoldering, wondering if I am progressing
Dear Camille,
I share Multibilly's and Toni's concern. Pain in the setting of rising monoclonal protein should be investigated further.
I am assuming that you have had a bone marrow biopsy and aspiration at some point previously, and were diagnosed only with a plasmacytoma that was treated with localized radiation therapy.
You have indicated that your MRI had previously shown a small lesion in the spine. I would start with checking a skeletal survey which should capture your ribs, spine, sternum and long bones of your hands and feet. If the skeletal survey shows lytic lesion, systemic therapy would be required.
If it is unremarkable, an MRI of the entire spine (cervical, thoracic, and lumbo-scaral) would be reasonable. Alternatively, a PET-CT can be performed, but for the sake of comparing the spine lesion, it may be best to perform the same test that had previously shown an abnormality (i.e MRI).
I hope all your tests results are unremarkable.
I share Multibilly's and Toni's concern. Pain in the setting of rising monoclonal protein should be investigated further.
I am assuming that you have had a bone marrow biopsy and aspiration at some point previously, and were diagnosed only with a plasmacytoma that was treated with localized radiation therapy.
You have indicated that your MRI had previously shown a small lesion in the spine. I would start with checking a skeletal survey which should capture your ribs, spine, sternum and long bones of your hands and feet. If the skeletal survey shows lytic lesion, systemic therapy would be required.
If it is unremarkable, an MRI of the entire spine (cervical, thoracic, and lumbo-scaral) would be reasonable. Alternatively, a PET-CT can be performed, but for the sake of comparing the spine lesion, it may be best to perform the same test that had previously shown an abnormality (i.e MRI).
I hope all your tests results are unremarkable.
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Dr. Prashant Kapoor - Name: Prashant Kapoor, M.D.
Beacon Medical Advisor
12 posts
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