My husband was diagnosed with smoldering myeloma 5 months ago.
September 18, 2014 :
Kappa 93.33 Range 3.3-19.4
Lambda 15.67 Range 5.7-26.3
Ratio 5.96 Range 0.26-1.65
M-spike 1.0
IgG 1751 Range 694-1618
His bone marrow biopsy showed 10% and and his PET scan dated November 13, 2015 was clear. His FISH showed a lot of abnormal chromosome types and possibly high risk. All was polyclonal (they tested further and found a lot of light chain).
He had his first 3-month routine test a couple of days ago. The WBC and RBC and hematocrit and hemoglobin actually improved a bit (he always was just a bit low on those 4 items). After the blood results posted, we got a post that his oncologist appointment is canceled this Friday. I assume because they were satisfied that the blood work was not deteriorating ?
Is this the normal routine for smoldering patients - only a 3-month CBC blood work and no appointments needed ?
Also, we have our first visit with a myeloma specialist in 2 weeks and I want to be sure that we have enough info and lab follow ups for the specialist to look at.
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brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: Smoldering myeloma - how often should testing be done?
Hi Brandyjoco,
3-month routine testing for SMM patients is pretty normal. Testing may drop to every 4 months or 6 months if things are quite stable and one's numbers aren't that high and there aren't any high risk items. If you are really anxious or some key markers are changing quite a bit, you could ask for 8 or 10 week testing, but you can sort that out when you see the specialist.
From the results you posted here, it seems like you've got most of the key tests in hand. Bone marrow biopsy/FISH, serum protein electrophoresis, serum immunofixation, free light chain, quantified immunoglobulins, metabolic panel and CBC are the key tests you want to have in hand. Any radiological reports and the CD from any imaging session would be good to take to the specialist as well.
3-month routine testing for SMM patients is pretty normal. Testing may drop to every 4 months or 6 months if things are quite stable and one's numbers aren't that high and there aren't any high risk items. If you are really anxious or some key markers are changing quite a bit, you could ask for 8 or 10 week testing, but you can sort that out when you see the specialist.
From the results you posted here, it seems like you've got most of the key tests in hand. Bone marrow biopsy/FISH, serum protein electrophoresis, serum immunofixation, free light chain, quantified immunoglobulins, metabolic panel and CBC are the key tests you want to have in hand. Any radiological reports and the CD from any imaging session would be good to take to the specialist as well.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Smoldering myeloma - how often should testing be done?
Are the 3 month checkups only blood work?
There were no other tests given, so are we really sure the light chains are not increasing.
There were no other tests given, so are we really sure the light chains are not increasing.
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brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: Smoldering myeloma - how often should testing be done?
Hi Brandyjoco,
As a smoldering myeloma patient, I get blood work done every 2-3 months and then have a follow up appointment with my oncologist about 7-10 days later to discuss the results each time. However, if you know which markers to track and graph them over time, you could make a case for occasionally skipping the appointment with the oncologist to discuss the results (as I've done a couple of times due to travels), unless you happen to notice a very dramatic change in the numbers.
The routine tests I get include CBC, metabolic panel, SPEP, IFE, quantified immunoglobulins and free light chains. If I'm understanding your earlier comment, you can't rely on only a CBC test for routine screening purposes, IMHO.
Depending on your husband's situation, one might routinely get re-imaged every year or so. However, this is something which may end up being done less often (or more frequently) based on your husband's particular situation. It's also a good idea to get a DEXA scan every year or so. I happen to push for getting re-imaged less frequently, but ask for a PET/CT instead of a skeletal x-ray survey when I do get imaged.
My oncologist will not order another bone marrow biopsy for me unless my numbers were to change pretty dramatically and were signalling a change to symptomatic myeloma.
Lastly, my oncologist and I agree that there's really no reason to do a routine 24-hour urine test in my particular situation and stage. But doctors seem to have different policies when it comes to this test.
As a smoldering myeloma patient, I get blood work done every 2-3 months and then have a follow up appointment with my oncologist about 7-10 days later to discuss the results each time. However, if you know which markers to track and graph them over time, you could make a case for occasionally skipping the appointment with the oncologist to discuss the results (as I've done a couple of times due to travels), unless you happen to notice a very dramatic change in the numbers.
The routine tests I get include CBC, metabolic panel, SPEP, IFE, quantified immunoglobulins and free light chains. If I'm understanding your earlier comment, you can't rely on only a CBC test for routine screening purposes, IMHO.
Depending on your husband's situation, one might routinely get re-imaged every year or so. However, this is something which may end up being done less often (or more frequently) based on your husband's particular situation. It's also a good idea to get a DEXA scan every year or so. I happen to push for getting re-imaged less frequently, but ask for a PET/CT instead of a skeletal x-ray survey when I do get imaged.
My oncologist will not order another bone marrow biopsy for me unless my numbers were to change pretty dramatically and were signalling a change to symptomatic myeloma.
Lastly, my oncologist and I agree that there's really no reason to do a routine 24-hour urine test in my particular situation and stage. But doctors seem to have different policies when it comes to this test.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Smoldering myeloma - how often should testing be done?
Hi Brandy:
Of the many fine points posted by Multibilly, I just wanted to emphasize one of which I had posted earlier, that you may not have seen.
When you first get diagnosed for smoldering, whether it's your first encounter with the condition, or advancing from MGUS, you need to be very, very vigilant, and I would certainly follow up at least every 3 months, as noted by Multibilly. There is a sub-group of smoldering patients that stays there for 10+ years. I hope you are in that group. But (after the fact for us), there is a sub-group that blasts through smoldering in one to two years. My wife was at the MGUS stage for 8 years, plus more time that we are not sure of before the initial MGUS diagnosis. It took her that 8 years to go from an M-Spike of about 2 g/dL to about 3 g/dL (20 to 30 g/L), all this time it was a low-level worry, but we were able to live our lives without issue, thank God.
At a little above 3 g/dL, the doctor did a bone marrow biopsy, and declared it was smoldering. Reading the general literature, and not being as educated as others (e.g. Multibilly) at this stage, we were hoping for another 10 years or so before having to deal with the issue. In about a year, her M-spike shot up to 7 g/dL. We almost let it get out of hand, but fortunately we got induction started before symptoms kicked in, but in reality, they were starting to kick in.
So please be very vigilant, if you make it to 3 years at smoldering, that would be good sign, but have it followed up at least every 3 months at this point.
Good luck
Of the many fine points posted by Multibilly, I just wanted to emphasize one of which I had posted earlier, that you may not have seen.
When you first get diagnosed for smoldering, whether it's your first encounter with the condition, or advancing from MGUS, you need to be very, very vigilant, and I would certainly follow up at least every 3 months, as noted by Multibilly. There is a sub-group of smoldering patients that stays there for 10+ years. I hope you are in that group. But (after the fact for us), there is a sub-group that blasts through smoldering in one to two years. My wife was at the MGUS stage for 8 years, plus more time that we are not sure of before the initial MGUS diagnosis. It took her that 8 years to go from an M-Spike of about 2 g/dL to about 3 g/dL (20 to 30 g/L), all this time it was a low-level worry, but we were able to live our lives without issue, thank God.
At a little above 3 g/dL, the doctor did a bone marrow biopsy, and declared it was smoldering. Reading the general literature, and not being as educated as others (e.g. Multibilly) at this stage, we were hoping for another 10 years or so before having to deal with the issue. In about a year, her M-spike shot up to 7 g/dL. We almost let it get out of hand, but fortunately we got induction started before symptoms kicked in, but in reality, they were starting to kick in.
So please be very vigilant, if you make it to 3 years at smoldering, that would be good sign, but have it followed up at least every 3 months at this point.
Good luck
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JPC - Name: JPC
Re: Smoldering myeloma - how often should testing be done?
My husband just got his 3 month test results (actually it has been 5 months since the September 2015 tests and diagnosis of smoldering):
Result Sep 2015 Feb 2016 Ref Range
Kappa 93.33 104.72 (3.3-19.4)
Lambda 15.67 14.69 (5.7-26.3)
Ratio 5.96 7.13 (0.26-1.65)
M-spike 1.0 1.2 g/dL
IgG 1751 1809 (694-1618)
I asked for a bone density test and the results seemed to be average for my husbands age of 54 and his mineral deposits were considered pretty good, so I am glad for that (though I don't know how important that is in the scheme of things).
We will be visiting a myeloma specialist for the first time in 2 weeks. I have a lot of very technical questions ready for him especially considering the TP53 mutations on the FISH ('DEL17P DETECTED').
I am so glad that we live so close to such educated doctors. I hope they will soon find a cure using T-cell or other type of targeted antibodies.
Result Sep 2015 Feb 2016 Ref Range
Kappa 93.33 104.72 (3.3-19.4)
Lambda 15.67 14.69 (5.7-26.3)
Ratio 5.96 7.13 (0.26-1.65)
M-spike 1.0 1.2 g/dL
IgG 1751 1809 (694-1618)
I asked for a bone density test and the results seemed to be average for my husbands age of 54 and his mineral deposits were considered pretty good, so I am glad for that (though I don't know how important that is in the scheme of things).
We will be visiting a myeloma specialist for the first time in 2 weeks. I have a lot of very technical questions ready for him especially considering the TP53 mutations on the FISH ('DEL17P DETECTED').
I am so glad that we live so close to such educated doctors. I hope they will soon find a cure using T-cell or other type of targeted antibodies.
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brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
6 posts
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