So I had the follow up after my BMB and it's a little different than what I expected.
The pathologist did state that the sample indicated only 2% plasma cells, but there were "groupings" of cells that put the total in the 5-10% category. I have no idea what that means, but I'm happy we confirmed MGUS.
That said, they want me to follow up in 3 months again because of my frequent illnesses. (I had intestinal illness for a week then later I had fever and chills for 3-4 days just in the past month).
Interestingly, they found I have low iron reserves in the bone, although my labs do not indicate anemia.
So I'm going to start taking iron supplements and I will increase my vitamin D supplements as I seem to remain a bit low.
My hope is that these supplements will help give me a little more energy.
Hope you all are well! If you haven't added to the comments, please do so. Thanks!
Forums
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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: Why were you tested for MGUS?
Hey Toni,
Glad to hear things turned out reasonably good for you.
It never got flagged by my doc on my BMB write-up, but it clearly mentions "Decreased Iron stores and decreased iron utilization" in the final diagnosis section of my BMB report. However, at the time, my hemoglobin and RBC were all perfectly normal and I was never flagged as having anemia or being at immediate risk of becoming anemic (at least when I was first diagnosed).
I therefore never was clear if this kind of finding in a BMB report is routine for folks with a monoclonal gammopathy, regardless if they have anemia or not.
Then, 20 months later, I went through the rigamarole described in this forum discussion:
"Counteracting anemia," Beacon forum discussion started July 22, 2014
I have no idea if any additional tests like measuring your ferritin or TIBC would be useful in your case or not.
The only thing I now know for sure is that iron utilization in the human body is a much more complex process than I first thought
Glad to hear things turned out reasonably good for you.
It never got flagged by my doc on my BMB write-up, but it clearly mentions "Decreased Iron stores and decreased iron utilization" in the final diagnosis section of my BMB report. However, at the time, my hemoglobin and RBC were all perfectly normal and I was never flagged as having anemia or being at immediate risk of becoming anemic (at least when I was first diagnosed).
I therefore never was clear if this kind of finding in a BMB report is routine for folks with a monoclonal gammopathy, regardless if they have anemia or not.
Then, 20 months later, I went through the rigamarole described in this forum discussion:
"Counteracting anemia," Beacon forum discussion started July 22, 2014
I have no idea if any additional tests like measuring your ferritin or TIBC would be useful in your case or not.
The only thing I now know for sure is that iron utilization in the human body is a much more complex process than I first thought
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Why were you tested for MGUS?
Gee, Multibilly, I was just reading that thread 
The health care specialist who did my bone marrow biopsy recommended I take an iron supplement. I'm more than happy to comply if it will make me feel any better!
Btw, that reminds me of a commercial for Geritol when I was much, much younger
"For iron poor blood"
I did post a question in here in the forum because there were a few things on the report I couldn't understand (um, how about everything?!). I hope someone answers because I'm mired in internet search sludge right now and I can't extract myself!!
The health care specialist who did my bone marrow biopsy recommended I take an iron supplement. I'm more than happy to comply if it will make me feel any better!
Btw, that reminds me of a commercial for Geritol when I was much, much younger
"For iron poor blood"
I did post a question in here in the forum because there were a few things on the report I couldn't understand (um, how about everything?!). I hope someone answers because I'm mired in internet search sludge right now and I can't extract myself!!
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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: Why were you tested for MGUS?
I was tested because my integrative health practitioner was concerned about 3 successive 6-monthly blood tests that showed neutropenia, mild anemia, and borderline Hb. She suspected that it was a bone marrow issue and referred me to a hematologist. I have probably had MGUS for at least 18 months prior to diagnosis.
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Spanish Mary - Name: Spanish Mary
- Who do you know with myeloma?: Self, MGUS
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 59
Re: Why were you tested for MGUS?
I was seeing a neurologist for neuro-lyme disease and had neuropathy complaints so he ordered the SPEP. Fortunately.
I had positive m-proteins (0.6 - 0.9 g/dL) in blood plasma with abnormal kappa / lambda free light chain ratio with high levels of lambda light chains. M-spike present in blood, urine (Bence-Jones) and BMB also showing 5% plasma cells and lambda light chains. Congo red & fat pad biopsy negative for amyloidosis.
Negative for amyloidosis or lymphoma.
This was all discovered / diagnosed age 36. I'm currently monitored every 6 months.
Oncologist believes it could be due to the chronic inflammatory process from having post Lyme disease severe arthritis.
I reccomend all chronic lyme sufferers to get an SPEP test.
I had positive m-proteins (0.6 - 0.9 g/dL) in blood plasma with abnormal kappa / lambda free light chain ratio with high levels of lambda light chains. M-spike present in blood, urine (Bence-Jones) and BMB also showing 5% plasma cells and lambda light chains. Congo red & fat pad biopsy negative for amyloidosis.
Negative for amyloidosis or lymphoma.
This was all discovered / diagnosed age 36. I'm currently monitored every 6 months.
Oncologist believes it could be due to the chronic inflammatory process from having post Lyme disease severe arthritis.
I reccomend all chronic lyme sufferers to get an SPEP test.
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Rosie+George - Who do you know with myeloma?: MGUS-myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 36
Re: Why were you tested for MGUS?
Hello,
Glad you asked that question! I was having joint pain, neuropathy, double vision, and fatigue. I was off balance from the neuropathy. This was all increasing over a period of years - in both frequency and amount of pain/neuropathy. I thought I had arthritis. I also had an increasing (and still do!) number of bacterial infections. I haven't had so many ear-nose-throat infections since I was 6!
I had a swollen thyroid for no reason (thyroiditis), and asked to see an endocrinologist. She thought I had MS, sent me to a neurologist. She did a lumbar puncture, and found "one O band", which she said did not rule out MS, but they found MGUS. So she sent me to the hematologist/oncologist.
I nicknamed him Dr. Acula from all the blood he took. Then he found IgG kappa MGUS. I never got any numbers so don't know why, but he scheduled me for a bone marrow biopsy. That was not fun. He said the paraprotein is in my blood and urine and bone marrow, but not high enough to treat.
I have had increasing neuropathy, severe fatigue & pain after doing too much, and other things that made them see me every 3 months. And do another 24 hr test. I see the doctor in 2 weeks. Hope there is no correlation between the increased pain and M protein levels!
Hope this answers your question!
Glad you asked that question! I was having joint pain, neuropathy, double vision, and fatigue. I was off balance from the neuropathy. This was all increasing over a period of years - in both frequency and amount of pain/neuropathy. I thought I had arthritis. I also had an increasing (and still do!) number of bacterial infections. I haven't had so many ear-nose-throat infections since I was 6!
I had a swollen thyroid for no reason (thyroiditis), and asked to see an endocrinologist. She thought I had MS, sent me to a neurologist. She did a lumbar puncture, and found "one O band", which she said did not rule out MS, but they found MGUS. So she sent me to the hematologist/oncologist.
I nicknamed him Dr. Acula from all the blood he took. Then he found IgG kappa MGUS. I never got any numbers so don't know why, but he scheduled me for a bone marrow biopsy. That was not fun. He said the paraprotein is in my blood and urine and bone marrow, but not high enough to treat.
I have had increasing neuropathy, severe fatigue & pain after doing too much, and other things that made them see me every 3 months. And do another 24 hr test. I see the doctor in 2 weeks. Hope there is no correlation between the increased pain and M protein levels!
Hope this answers your question!
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SKY
Re: Why were you tested for MGUS?
Thanks all for contributing! I think when it comes to MGUS (and maybe even SMM?) it helps to know what other people have experienced as well.
I just discovered I have a high kappa/lambda ratio. I've never been tested and I was surprised they finally called for testing.
I think that puts me still in low risk, but higher than if I were only IgG kappa, 5-10% BMB plasma cells and lower than 1.5 m-spike, all of which is true for me.
I think it's really helpful when we all share like this because then we know what kind of issues or even more so, what kind of unanswered questions we have about our health. I think the neuropathy is not uncommon in MGUS and there are studies that bear that out.
Does anyone else have a high kappa / lambda ratio and what did your oncologist tell you about it? Thanks!
I just discovered I have a high kappa/lambda ratio. I've never been tested and I was surprised they finally called for testing.
I think that puts me still in low risk, but higher than if I were only IgG kappa, 5-10% BMB plasma cells and lower than 1.5 m-spike, all of which is true for me.
I think it's really helpful when we all share like this because then we know what kind of issues or even more so, what kind of unanswered questions we have about our health. I think the neuropathy is not uncommon in MGUS and there are studies that bear that out.
Does anyone else have a high kappa / lambda ratio and what did your oncologist tell you about it? Thanks!
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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: Why were you tested for MGUS?
Hi Toni,
I am IgG lamda MGUS so my ratio is low but if I express it according to the new IMWG guidelines (involved/uninvolved), my ratio is 5,0. My latest m-spike is "about 15 g/L", so I am also just above low risk. My haematologist told me that she only becomes concerned when the involved light chain reaches 100 mg/L (mine is 52).
Unfortunately she added that she has found it is usually the lambda variant that progresses. This has bothered me for some time now, but I didn't want to put the question out there and scare others like me unnecessarily. I am seeing her later this month and will report my new results under the "Thyroid hormones and multiple myeloma" thread.
I am IgG lamda MGUS so my ratio is low but if I express it according to the new IMWG guidelines (involved/uninvolved), my ratio is 5,0. My latest m-spike is "about 15 g/L", so I am also just above low risk. My haematologist told me that she only becomes concerned when the involved light chain reaches 100 mg/L (mine is 52).
Unfortunately she added that she has found it is usually the lambda variant that progresses. This has bothered me for some time now, but I didn't want to put the question out there and scare others like me unnecessarily. I am seeing her later this month and will report my new results under the "Thyroid hormones and multiple myeloma" thread.
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Spanish Mary - Name: Spanish Mary
- Who do you know with myeloma?: Self, MGUS
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 59
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