Hello fellow MGUS patients,
I'm new to this forum despite having been diagnosed with MGUS 9 years ago. I was told MGUS is a benign blood disorder that "might" progress to multiple myeloma. My question is, why can't they treat MGUS before it progresses?
My most recent lab results (Nov 2016) seem to show my MGUS is stable:
Kappa free light chain value: 3.62 (This value has never gone above 4)
Lambda free light chain value: 0.71
Kappa/ Lambda ffee light chain ratio: 5.1 (previous value in July 2015 was 17.22)
IgG: 684
IgA: 121
IgM: 38
IFX Interpretation: Monoclonal IgG kappa band seen in serum immunofixation.
SEP Interpretation: Monoclonal protein band seen in serum electrophoresis. Pattern is
consistent with a monoclonal gammopathy. Concentration of monoclonal protein band in gamma region is 0.3 g/dl [3 g/l].
I understand from reading this forum that for a diagnosis of multiple myeloma the kappa-lambda ratio needs to be 100. I'm elated that mine ratio is only 5.1.
But my question is why can't they start treatment on me to prevent my ratio from ever reaching 100? Does this make any sense? I'm just frustrated on this "waiting for the other shoe to drop" feeling.
Additionally, in the past few months, I've developed pain in my joints that is getting progressively worse. I also wake up nightly with my hands and arms feeling numb. I have to turn over and lie on the other side for the numbness to go away from the side of my body that I had been laying on.
I appreciate any and all replies.
Forums
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AmigosPal - Who do you know with myeloma?: self- MGUS
- When were you/they diagnosed?: 2007
- Age at diagnosis: 45
Re: Why isn't MGUS treated? Why wait for it to progress?
My haematologist explained it to me as follows. MGUS is a condition that may or may not lead to cancer. So why put a healthy person through chemo, etc, if they may never develop something. There is also no cure for the related cancers, but only treatment options.
Hope it make sense.
Hope it make sense.
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Aussie - Name: Assue
- Who do you know with myeloma?: Nil
- When were you/they diagnosed?: 2015
- Age at diagnosis: 37
Re: Why isn't MGUS treated? Why wait for it to progress?
Thank you, Aussie. But what about other treatments, like a stem cell transplant before there is organ damage? I hate this feeling of waiting until there is irreversible damage before trying some other options.
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AmigosPal - Who do you know with myeloma?: self- MGUS
- When were you/they diagnosed?: 2007
- Age at diagnosis: 45
Re: Why isn't MGUS treated? Why wait for it to progress?
Well, for every 100 people, only 1 will progress. so why treat 99 healthy people? Any treatment will only slow down the progression, not cure a person. Best to keep the big guns for when you really need it.
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Aussie - Name: Assue
- Who do you know with myeloma?: Nil
- When were you/they diagnosed?: 2015
- Age at diagnosis: 37
Re: Why isn't MGUS treated? Why wait for it to progress?
Okay. That makes sense. Thanks for the input, Aussie. I really appreciate it.
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AmigosPal - Who do you know with myeloma?: self- MGUS
- When were you/they diagnosed?: 2007
- Age at diagnosis: 45
Re: Why isn't MGUS treated? Why wait for it to progress?
Happy to help.
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Aussie - Name: Assue
- Who do you know with myeloma?: Nil
- When were you/they diagnosed?: 2015
- Age at diagnosis: 37
Re: Why isn't MGUS treated? Why wait for it to progress?
I've read a few articles that they are trying to sort out which ones with MGUS will progress and which ones won't. I agree that I wish there was some form of treatment, not only for prevention, but for the symptoms of MGUS. I know doctors say MGUS is symptomless, yet so many of us have symptoms. Sigh. Hopefully medicine will get there soon! The only advice I was given by my hematologist was to meditate, be happy, and take care of my immune system – which I am following.
Re: Why isn't MGUS treated? Why wait for it to progress?
Thank you, Maple Tree.
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AmigosPal - Who do you know with myeloma?: self- MGUS
- When were you/they diagnosed?: 2007
- Age at diagnosis: 45
Re: Why isn't MGUS treated? Why wait for it to progress?
Hello AmigosPal,
You didn't post your bone marrow plasma cell percentage on your inquiry. Have you had a bone marrow biopsy? If not, then I suggest you request one. Also, what is your involved immunoglobulin?
I had symptoms when I had MGUS and they were mainly chronic infection and neuropathy. I am on IVIG as a smoldering patient, and this treats both of those ailments.
I also wanted to comment on your post because if your involved immunoglobulin is IgG, it is low, and this also occurred with me as an MGUS patient as well as suppression of the IgM immunoglobulin. This puts you at a higher risk for progression, so I think it would behoove you to get that baseline bone marrow biopsy.
Best,
J
You didn't post your bone marrow plasma cell percentage on your inquiry. Have you had a bone marrow biopsy? If not, then I suggest you request one. Also, what is your involved immunoglobulin?
I had symptoms when I had MGUS and they were mainly chronic infection and neuropathy. I am on IVIG as a smoldering patient, and this treats both of those ailments.
I also wanted to comment on your post because if your involved immunoglobulin is IgG, it is low, and this also occurred with me as an MGUS patient as well as suppression of the IgM immunoglobulin. This puts you at a higher risk for progression, so I think it would behoove you to get that baseline bone marrow biopsy.
Best,
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Why isn't MGUS treated? Why wait for it to progress?
Thank you, jhorner. I did have a bone marrow biopsy back in 2007 when I was first diagnosed. I don't remember the plasma cell percentage, but I go back to see my oncologist / hematologist on Friday and plan to ask her this question.
You also asked me what my involved immunoglobulin was. I'm not sure I understand this question or how to interpret my results.
This statement is on my latest lab results:
Monoclonal IgG kappa band seen in serum immunofixation.
Is this what you mean? If not, what do I need to look for on my results to find this answer?
You also asked me what my involved immunoglobulin was. I'm not sure I understand this question or how to interpret my results.
This statement is on my latest lab results:
Monoclonal IgG kappa band seen in serum immunofixation.
Is this what you mean? If not, what do I need to look for on my results to find this answer?
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AmigosPal - Who do you know with myeloma?: self- MGUS
- When were you/they diagnosed?: 2007
- Age at diagnosis: 45
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