Hi everybody,
I am very new to all of this. My family doctor found an M-spike in my blood and sent me to an oncologist; lots of blood tests, and in result I am here, very, very confused! I don't have any symptoms, just a little bit of back pain, which I think that has to do with my herniated disc.
The M-spike is 1.1 g/dL (11 g/L), my IgG is 1850 (high), IgM 350 (high), IgA normal, kappa, lambda and ratio also normal, slightly low in lymphocytes, and slightly high in red blood cells, also slightly high in gamma globulin.
I have not done a bone marrow biopsy yet. Honestly, I don't believe in conventional medicine very much. The oncologist wants to see me in three months, and I said if my numbers went up or down, then I will consider bone marrow biopsy. I also made an appointment with a multiple myeloma specialist in the Los Angeles area.
I started to take lots of supplements like curcumin, resveratrol, green tea extract, vitamin D3 and C, omega 3 fatty acids, and milk thistle, about 2 weeks now.
Honestly I don't know what I have! The oncologist said MGUS, but is this eventually getting me to the myeloma world? Can I prevent it?
I am thirsty for any kind of info and appreciate any thoughts.
Forums
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Mojbahar - Name: M
- Who do you know with myeloma?: Self mgus
- When were you/they diagnosed?: Jully 2016
- Age at diagnosis: 48
Re: MGUS diagnosis, but will I progress to multiple myeloma?
Welcome to the forum.
The myeloma specialist will undoubtedly go over all the risks of progression from MGUS to multiple myeloma with you. In general, the risk of progression of MGUS developing into multiple myeloma is only about 1.5% - 2% per year for most MGUS patients.
What exactly did your serum immunofixation test state? I ask because you have both an elevated IgG and IgM level. If you have an IgM M-spike, that raises some additional considerations which the myeloma specialist will almost certainly go over with you.
Note that if a myeloma specialist recommends doing a bone marrow biopsy (or any other procedures for that matter), I would suggest following through with the procedure. In my opinion, this is not a disease where you want to abandon "conventional" medicine or a doctor's recommendations. That's not to say that you shouldn't try alternative approaches and diets (a lot of us experiment with these things on this forum), but I wouldn't recommend doing them at the expense of following a multiple myeloma specialist's recommendations.
The myeloma specialist will undoubtedly go over all the risks of progression from MGUS to multiple myeloma with you. In general, the risk of progression of MGUS developing into multiple myeloma is only about 1.5% - 2% per year for most MGUS patients.
What exactly did your serum immunofixation test state? I ask because you have both an elevated IgG and IgM level. If you have an IgM M-spike, that raises some additional considerations which the myeloma specialist will almost certainly go over with you.
Note that if a myeloma specialist recommends doing a bone marrow biopsy (or any other procedures for that matter), I would suggest following through with the procedure. In my opinion, this is not a disease where you want to abandon "conventional" medicine or a doctor's recommendations. That's not to say that you shouldn't try alternative approaches and diets (a lot of us experiment with these things on this forum), but I wouldn't recommend doing them at the expense of following a multiple myeloma specialist's recommendations.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS diagnosis, but will I progress to multiple myeloma?
Thank you very very much for your response, truly appreciated.
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Mojbahar - Name: M
- Who do you know with myeloma?: Self mgus
- When were you/they diagnosed?: Jully 2016
- Age at diagnosis: 48
Re: MGUS diagnosis, but will I progress to multiple myeloma?
I think it is written in the stars as to whether MGUS develops into myeloma.
In my case, I had MGUS for ten years before it switched over to multiple myeloma. However, I also had other bone marrow troubles (a lymphoproliferative disorder, anemia, neutropenia and monocytopenia). I suspect these factors increased my chances of getting multiple myeloma.
The best thing is to make sure your MGUS is monitored. I found graphing in a spreadsheet program to be a very useful way to keep an eye on my blood numbers. It was obvious when my M-protein numbers shot up to 50 g/L (5 g/dL) from roughly 17 g/L. (A logarithmic graph was also useful.)
Keep to your healthy ways.
Joe
In my case, I had MGUS for ten years before it switched over to multiple myeloma. However, I also had other bone marrow troubles (a lymphoproliferative disorder, anemia, neutropenia and monocytopenia). I suspect these factors increased my chances of getting multiple myeloma.
The best thing is to make sure your MGUS is monitored. I found graphing in a spreadsheet program to be a very useful way to keep an eye on my blood numbers. It was obvious when my M-protein numbers shot up to 50 g/L (5 g/dL) from roughly 17 g/L. (A logarithmic graph was also useful.)
Keep to your healthy ways.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: MGUS diagnosis, but will I progress to multiple myeloma?
Thanks Joe.
Could you please tell me if you did anything to remain MGUS for 10 years? If you don't mind
of course.
Could you please tell me if you did anything to remain MGUS for 10 years? If you don't mind
of course.
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Mojbahar - Name: M
- Who do you know with myeloma?: Self mgus
- When were you/they diagnosed?: Jully 2016
- Age at diagnosis: 48
Re: MGUS diagnosis, but will I progress to multiple myeloma?
Dear Multibilly,
I checked my blood result again. He did order immunofixation serum. It says:
"Monoclonal IgG lambda protein present, consistent with monoclonal gammopathy."
He ordered the same thing in urine which says it is not present.
I checked my blood result again. He did order immunofixation serum. It says:
"Monoclonal IgG lambda protein present, consistent with monoclonal gammopathy."
He ordered the same thing in urine which says it is not present.
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Mojbahar - Name: M
- Who do you know with myeloma?: Self mgus
- When were you/they diagnosed?: Jully 2016
- Age at diagnosis: 48
Re: MGUS diagnosis, but will I progress to multiple myeloma?
I wish I knew a magical elixir that would do the trick, but I do not.
However, I can say that when I first came down with my blood disorders, I thought a lot about what I could do to tilt the table in my favour. I decided early on that it was up to me to do everything possible to keep my overall health at a high level. For me, this meant eating properly (modified low meat Mediterranean diet), exercising (I like to walk), engaging in mental stimulations (crosswords, pursue knowledge), and enjoying the emotional side of my life (friends, opera, good books, …). I also learned to drop the small stuff that was cluttering my life.
I had hoped that my MGUS would not transform to multiple myeloma, but it did. To be sure, I do not regret my general approach and still think it is a really good way to go for almost any disease.
Best of Luck, Mojbahar.
Joe
However, I can say that when I first came down with my blood disorders, I thought a lot about what I could do to tilt the table in my favour. I decided early on that it was up to me to do everything possible to keep my overall health at a high level. For me, this meant eating properly (modified low meat Mediterranean diet), exercising (I like to walk), engaging in mental stimulations (crosswords, pursue knowledge), and enjoying the emotional side of my life (friends, opera, good books, …). I also learned to drop the small stuff that was cluttering my life.
I had hoped that my MGUS would not transform to multiple myeloma, but it did. To be sure, I do not regret my general approach and still think it is a really good way to go for almost any disease.
Best of Luck, Mojbahar.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: MGUS diagnosis, but will I progress to multiple myeloma?
Hi Mojbahar,
I'm in a similar early stage of disease, though on a different trajectory from yourself. Everyone on this journey gets their own path to follow. I, too, have a deep suspicion of the modern medical industry. I'm doing what I can to manage the disease with supplements at this point, but it is probably not going to work out – at least, the supplements / diet / exercise aren't going to cure me.
So I'd echo what Multibilly said – in spite of my suspicious nature regarding the motives of the modern medical industry, the myeloma treatments on offer today really do improve life expectancy and quality of life in the vast majority of cases. Personally, I will be following standard medical advice as soon as it becomes rather more likely than not that my disease has progressed to myeloma.
I'm in a similar early stage of disease, though on a different trajectory from yourself. Everyone on this journey gets their own path to follow. I, too, have a deep suspicion of the modern medical industry. I'm doing what I can to manage the disease with supplements at this point, but it is probably not going to work out – at least, the supplements / diet / exercise aren't going to cure me.
So I'd echo what Multibilly said – in spite of my suspicious nature regarding the motives of the modern medical industry, the myeloma treatments on offer today really do improve life expectancy and quality of life in the vast majority of cases. Personally, I will be following standard medical advice as soon as it becomes rather more likely than not that my disease has progressed to myeloma.
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Trae - Name: Trae
- Who do you know with myeloma?: me (plasmacytoma with MGUS)
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 43
Re: MGUS diagnosis, but will I progress to multiple myeloma?
Regarding the statement "Monoclonal IgG lambda protein present, consistent with monoclonal gammopathy", that's good news. However, your IgM also seems to be elevated. Since the IgM rise isn't monoclonal in nature (again, good news), it could suggest the presence of an infection or inflammation. It might be good to discuss the situation with the myeloma specialist at your upcoming appointment.
Also, when you say your "kappa and lambda are normal", was your statement based on SERUM (blood) FREE light chain kappa and lambda values?
Also, when you say your "kappa and lambda are normal", was your statement based on SERUM (blood) FREE light chain kappa and lambda values?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS diagnosis, but will I progress to multiple myeloma?
Dear Multibilly,
First, I want to acknowledge your care, kindness, and effort. Before I became active here in the forum, I was reading a lot to see if it would be helpful for me, and of course I noticed your activity and knowledge. It made met start writing and I knew you were going to be a first person to reply to my post.
Yes, my statement is based on SERUM (blood) FREE light chain kappa and lambda values.
First, I want to acknowledge your care, kindness, and effort. Before I became active here in the forum, I was reading a lot to see if it would be helpful for me, and of course I noticed your activity and knowledge. It made met start writing and I knew you were going to be a first person to reply to my post.
Yes, my statement is based on SERUM (blood) FREE light chain kappa and lambda values.
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Mojbahar - Name: M
- Who do you know with myeloma?: Self mgus
- When were you/they diagnosed?: Jully 2016
- Age at diagnosis: 48
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