John,
What multiple sclerosis drugs is your wife on? The free light chain values and accompanying ratio might suggest a small amount of bone marrow suppression, but this suppression can be caused by several of the drugs that are used to treat MS. See this thread for why I say this:
"Kappa & lambda free light chains down, but ratio up?" (started May 12, 2015)
As stated before, the VERY small M-spike could suggest MGUS (as does this specific combo of free light chain values). But, again, the M-spike is very small and the free light chain values are just barely out of range.
I'm not a doc and I'm not that educated about 24-hour urine tests, since I don't get them myself, but these urine test results by themselves don't scream any sort of monoclonal gammopathy to me.
In any case, the bone marrow biopsy is still going to be the telling test for whether a monoclonal gammopathy such as MGUS is occurring.
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Have multiple sclerosis, possibly multiple myeloma
John,
I was diagnosed with RR MS in January 2012 and multiple myeloma March 2014. I had been on weekly Avonex but was still having relapses and progression, so was in the process of getting approved for Tysabri when multiple myeloma became acute. Since no data is available for combining Tysabri or any MS disease modifying therapy with multiple myeloma therapies, my MS doc and I decided to treat MS symptoms only so we could focus on myeloma therapy.
We were hopeful that the auto stem cell transplant (SCT) would slow or stop the MS progression, which is not clearly understood since in the US it is not approved for MS treatment currently. I think it has slowed it some, but not completely.
This is definitely uncharted territory, so please keep us posted on treatment options offered to your wife and any supporting data if available, and I will do the same. As of now, however, all MS disease modifiers are on hold for me.
All the best! BN
I was diagnosed with RR MS in January 2012 and multiple myeloma March 2014. I had been on weekly Avonex but was still having relapses and progression, so was in the process of getting approved for Tysabri when multiple myeloma became acute. Since no data is available for combining Tysabri or any MS disease modifying therapy with multiple myeloma therapies, my MS doc and I decided to treat MS symptoms only so we could focus on myeloma therapy.
We were hopeful that the auto stem cell transplant (SCT) would slow or stop the MS progression, which is not clearly understood since in the US it is not approved for MS treatment currently. I think it has slowed it some, but not completely.
This is definitely uncharted territory, so please keep us posted on treatment options offered to your wife and any supporting data if available, and I will do the same. As of now, however, all MS disease modifiers are on hold for me.
All the best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Have multiple sclerosis, possibly multiple myeloma
Hi John,
I hope your wife is doing well.
Sorry if I missed something, but are any of the test results you shared in your latest posting more recent than those you posted earlier in the discussion thread? Or are they just duplicates of the values?
If you have not seen it already, this recent forum discussion may have information helpful to you and your wife:
"M-protein detectable but unable to quantitate" (started May 6, 2015)
Cheers!
I hope your wife is doing well.
Sorry if I missed something, but are any of the test results you shared in your latest posting more recent than those you posted earlier in the discussion thread? Or are they just duplicates of the values?
If you have not seen it already, this recent forum discussion may have information helpful to you and your wife:
"M-protein detectable but unable to quantitate" (started May 6, 2015)
Cheers!
Re: Have multiple sclerosis, possibly multiple myeloma
Dear all,
On Tuesday, after having bone marrow biopsy and fine needle aspiration procedures, the doctor, who specializes in multiple myeloma at MD Anderson, reviewed the results with us and concluded she has MGUS, requiring monitoring on a 6 month basis, followed by annually.
Needless to say, we are relieved and thankful.
It does not answer one of the questions (the MD Anderson doctor does not as well) we have, concerning the MS medication she takes (Rebiff 44 mcg - a beta interferon) and her blood work – it may never. We will continue to search for the answer in the MS community.
Thank you all for your excellent information and support in our process. I will continue to monitor the site – it is very progressive and informative along the journey of understanding, treating, and coping with multiple myeloma.
On Tuesday, after having bone marrow biopsy and fine needle aspiration procedures, the doctor, who specializes in multiple myeloma at MD Anderson, reviewed the results with us and concluded she has MGUS, requiring monitoring on a 6 month basis, followed by annually.
Needless to say, we are relieved and thankful.
It does not answer one of the questions (the MD Anderson doctor does not as well) we have, concerning the MS medication she takes (Rebiff 44 mcg - a beta interferon) and her blood work – it may never. We will continue to search for the answer in the MS community.
Thank you all for your excellent information and support in our process. I will continue to monitor the site – it is very progressive and informative along the journey of understanding, treating, and coping with multiple myeloma.
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octopus13 - Name: octopus13
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: Still under investigation
- Age at diagnosis: 61
Re: Have multiple sclerosis, possibly multiple myeloma
John,
I'm very glad to hear that you were able to clarify with the doctors what your wife's diagnosis is, and that it is MGUS. As you probably have read many times here in the forum, most people with MGUS never see their disease progress to the point where it requires treatment. I hope that will be the case for your wife.
If you haven't already, start creating a file with all your wife's myeloma-related test results. If you're good with computers, you also may want to start a spreadsheet where you keep track of her key test results. You can see the sort of test results Multibilly tracks in this forum thread he's been contributing to regularly since early last year:
https://myelomabeacon.org/forum/fenofibrate-tricor-and-multiple-myeloma-t2690.html
Finally, I want to say thank you for letting us know what you found out during your wife's recent doctor's appointment. It's really helpful to all of us here trying to learn more about this disease when we get follow-up postings like the one you just made this morning.
Good luck!
I'm very glad to hear that you were able to clarify with the doctors what your wife's diagnosis is, and that it is MGUS. As you probably have read many times here in the forum, most people with MGUS never see their disease progress to the point where it requires treatment. I hope that will be the case for your wife.
If you haven't already, start creating a file with all your wife's myeloma-related test results. If you're good with computers, you also may want to start a spreadsheet where you keep track of her key test results. You can see the sort of test results Multibilly tracks in this forum thread he's been contributing to regularly since early last year:
https://myelomabeacon.org/forum/fenofibrate-tricor-and-multiple-myeloma-t2690.html
Finally, I want to say thank you for letting us know what you found out during your wife's recent doctor's appointment. It's really helpful to all of us here trying to learn more about this disease when we get follow-up postings like the one you just made this morning.
Good luck!
Re: Have multiple sclerosis, possibly multiple myeloma
Cheryl,
Thank you - we have downloaded and made copies of all the test results, as well as put together a spread sheet that summarizes key statistics -
A question, for her PET scans, we have the interpretation of the results -- how about the actual CD of the films - does anyone keep these and are the Doctor's / hospitals required to give you a copy of these as well?
John
Thank you - we have downloaded and made copies of all the test results, as well as put together a spread sheet that summarizes key statistics -
A question, for her PET scans, we have the interpretation of the results -- how about the actual CD of the films - does anyone keep these and are the Doctor's / hospitals required to give you a copy of these as well?
John
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octopus13 - Name: octopus13
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: Still under investigation
- Age at diagnosis: 61
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