First off, thank you for being here. I really have found this site to be very helpful and truly appreciate the knowledge!
I have a couple of questions:
1st - Does a patient diagnosed with MGUS get a 2nd opinion, or do you wait until / if you progress to smoldering myeloma / multiple myeloma?
2nd- Is it a good idea as an MGUS patient to request a MRI/PET, or do you wait until progression or symptoms?
My history- Diagnosed IgA lambda MGUS November 2014. All labs seem to be stable. Bone marrow biopsy - 8% with 60% hypercellular with trilineage hematopoiesis. CD38+ / Lambda+ / CD56 = lambda-restricted. No FISH was done. Full skeletal x-rays done, all normal.
M-Spike
Nov 2014 - 1.0 g/dl with 2nd 0.50 g/dl
Apr 2015 - 1.3 g/dl
Aug 2015 - 1.1 g/dl
Immunoglobulins
Nov 2014 Apr 2015 Aug 2015
IgA - 1870 2050 1989
IgG - 655 658 607
IgM - 48 50 42
Free Light Chains
Apr 2015 Aug 2015
Kappa Light 8.4 mg/l 4.2 mg/l
Lambda Light 60.2 mg/l 57.6 mg/l
Kappa/lambda 0.14 0.07
Forums
3 posts
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Re: MGUS - when do you get a second opinion?
Regarding:
"Does a patient diagnosed with MGUS get a 2nd opinion...?"
I think most oncs that have basic familiarity with multiple myeloma, can monitor MGUS over time just fine, especially if you take the time to educate yourself on the tests and the things to monitor. But I think it's good to also extrapolate out and think about which doc and which kind of treatment you want (drug-only, transplant, clinical trials, etc), should you progress.
You should also be asking yourself if you feel totally comfortable with your current doc, if he/she is truly a multiple myeloma specialist, and if he/she is taking the time to answer all your questions and if this is the person that you want to manage your treatment in the future. Having thought those issues through, it would then be good to do your homework and seek out a second opinion at your leisure, so that you already have a relationship with this doctor should you continue to progress (and to have him/her re-confirm your current diagnosis and ongoing monitoring plan). At least, that was the approach that I took and I now know who my "go-to" doc will be should I ever need treatment.
" Is it a good idea as an MGUS patient to request a MRI/PET, or do you wait until progression or symptoms?"
First, I'm not a doc and this is just my own opinion as a layman. But given your "mild" numbers, it doesn't strike me that a PET/CT is immediately needed. But you might ask your doc when he/she was thinking of doing the next radiological exam (in x number of months, or only when your numbers were going south, or only when you experienced bone pain, or ??)... and to then ask that a PET/CT (or whole body MRI) be the imaging modality you want used at that time.
"Does a patient diagnosed with MGUS get a 2nd opinion...?"
I think most oncs that have basic familiarity with multiple myeloma, can monitor MGUS over time just fine, especially if you take the time to educate yourself on the tests and the things to monitor. But I think it's good to also extrapolate out and think about which doc and which kind of treatment you want (drug-only, transplant, clinical trials, etc), should you progress.
You should also be asking yourself if you feel totally comfortable with your current doc, if he/she is truly a multiple myeloma specialist, and if he/she is taking the time to answer all your questions and if this is the person that you want to manage your treatment in the future. Having thought those issues through, it would then be good to do your homework and seek out a second opinion at your leisure, so that you already have a relationship with this doctor should you continue to progress (and to have him/her re-confirm your current diagnosis and ongoing monitoring plan). At least, that was the approach that I took and I now know who my "go-to" doc will be should I ever need treatment.
" Is it a good idea as an MGUS patient to request a MRI/PET, or do you wait until progression or symptoms?"
First, I'm not a doc and this is just my own opinion as a layman. But given your "mild" numbers, it doesn't strike me that a PET/CT is immediately needed. But you might ask your doc when he/she was thinking of doing the next radiological exam (in x number of months, or only when your numbers were going south, or only when you experienced bone pain, or ??)... and to then ask that a PET/CT (or whole body MRI) be the imaging modality you want used at that time.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Very Helpful!!
3 posts
• Page 1 of 1