I posted in an earlier discussion thread ("Free light chain criteria for relapse?", started Mar 5, 2015) about my lambda free light chain numbers increasing and received some excellent advice.
I talked to my doctor about having a MRI and / or a bone marrow biopsy done. He indicated he did not feel this was necessary, that we would use the blood test results to determine when to change medications (his criteria are actually different than the standard criteria).
Is there any standard protocol for when to do MRI for an individual who is beginning to show progression in the disease?
It seems, regardless, you would want tests done on a periodic basis just so you would be able to measure the speed of the progression.
Thanks,
Bob
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bgmiller80 - Name: Bob
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2010
- Age at diagnosis: 58
Re: MRI to detect progression - any standard protocol?
Bob,
I probably will not be much help to you, because my situation seems to be just the opposite of what you describe. In the beginning when I was diagnosed in April 2014, all my labs were "normal". They have continued to be normal as of three weeks ago, when I had my most recent labs in clinic.
My doctor told me that usually they are able to gauge a patient's progress by the labs and know when to make changes in the medications, but he said in my case it would be necessary to do periodic MRI or bone marrow biopsy in order to know what is going on. Sounds like maybe they don't do these procedures unless they really need to?
Initially, I had a bone marrow biopsy, MRI, and bone survey. I had one follow-up MRI four months following the first one. That was August 2014. Have not had anything else done since then.
The MRI showed the plasmacytoma in the sacrum, bone survey showed no lesions, not even the plasmacytoma, and BM biopsy did confirm myeloma. Only a questionable lesion in femur showed up in the second MRI, as well as the known plasmacytoma in sacrum, and I assume at some point the doctor will want to do another MRI to see what is going on with that.
I do want to know as much as possible about what is going on with my myeloma, and have a need to be completely informed. I understand your concerns.
I probably will not be much help to you, because my situation seems to be just the opposite of what you describe. In the beginning when I was diagnosed in April 2014, all my labs were "normal". They have continued to be normal as of three weeks ago, when I had my most recent labs in clinic.
My doctor told me that usually they are able to gauge a patient's progress by the labs and know when to make changes in the medications, but he said in my case it would be necessary to do periodic MRI or bone marrow biopsy in order to know what is going on. Sounds like maybe they don't do these procedures unless they really need to?
Initially, I had a bone marrow biopsy, MRI, and bone survey. I had one follow-up MRI four months following the first one. That was August 2014. Have not had anything else done since then.
The MRI showed the plasmacytoma in the sacrum, bone survey showed no lesions, not even the plasmacytoma, and BM biopsy did confirm myeloma. Only a questionable lesion in femur showed up in the second MRI, as well as the known plasmacytoma in sacrum, and I assume at some point the doctor will want to do another MRI to see what is going on with that.
I do want to know as much as possible about what is going on with my myeloma, and have a need to be completely informed. I understand your concerns.
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Bonnie - Name: Bonnie
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April, 2014
- Age at diagnosis: 73
Re: MRI to detect progression - any standard protocol?
Thanks, your approach seems very logical.
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bgmiller80 - Name: Bob
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2010
- Age at diagnosis: 58
Re: MRI to detect progression - any standard protocol?
I don't get scans done unless I report a problem that is new. When I report what appears to be bone pain that is new, excruciating and continuous then my doctor orders scans. He listens to me because I have reported new bone pain previously that did turn out to be new problematic lesions. But, that is very rare. My bloodwork is what is used to monitor my myeloma and response to treatment. The only biopsy that I've ever had was when I was being diagnosed.
Because the path that my oncologist has chosen to follow with me seems to be working, I don't feel a need to have more often scans or biopsies. I do have a good relationship with my oncologist and feel that I can raise any problems with him and question his course of treatment when I think maybe something should be addressed.
Nancy in Phila
Because the path that my oncologist has chosen to follow with me seems to be working, I don't feel a need to have more often scans or biopsies. I do have a good relationship with my oncologist and feel that I can raise any problems with him and question his course of treatment when I think maybe something should be addressed.
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: MRI to detect progression - any standard protocol?
If a patient is asymptomatic during follow-up, I do not order an MRI. In fact, an MRI is not recommended as a part of routine follow up of patients with multiple myeloma unless there are specific clinical indications such as bone pain, symptoms of spinal cord compression, or suspicion of vertebral fracture. Some investigators use it for response assessment although, in general, outside of clinical trials, this indication is rarely considered.
Other than the above mentioned conditions, if there is a concern about the disease progression, one could perform an MRI (preferably whole body MRI, rather than spine MRI) for comparison with the baseline MRI . However, I usually perform it only if I think that the results would provide me additional information that would sway me in a certain direction of managing the patient.
Hope this helps. Good luck.
Prashant Kapoor
Other than the above mentioned conditions, if there is a concern about the disease progression, one could perform an MRI (preferably whole body MRI, rather than spine MRI) for comparison with the baseline MRI . However, I usually perform it only if I think that the results would provide me additional information that would sway me in a certain direction of managing the patient.
Hope this helps. Good luck.
Prashant Kapoor
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Dr. Prashant Kapoor - Name: Prashant Kapoor, M.D.
Beacon Medical Advisor
Re: MRI to detect progression - any standard protocol?
My doctor does the same as Nancy's. If I'm experiencing bone pain or any thing like that, then he will ask for an MRI. But for now, even with my high kappa light chains, I am asymptomatic as Dr. Kapoor points out, so no MRI is needed.
In my recent thread on high kappa light chains, I too received great info. My other tests are all in the normal range except kappa light chains and M protein of 0.4 g/dL (4 g/L).
So I understand what you're going thru. Since my kappa free light chains have remained the same for 3 months, my doctor feels there is no need to change medication yet.
I'd suggest to be tested monthly (I do) so your doctor can monitor any changes.
In my recent thread on high kappa light chains, I too received great info. My other tests are all in the normal range except kappa light chains and M protein of 0.4 g/dL (4 g/L).
So I understand what you're going thru. Since my kappa free light chains have remained the same for 3 months, my doctor feels there is no need to change medication yet.
I'd suggest to be tested monthly (I do) so your doctor can monitor any changes.
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
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