Multiple Myeloma- I have smoldering Myeloma. Does anyone have this diagnosis?

Posted by Debbie @debbie1, Jul 10, 2011

Multiple Myeloma- I have smoldering Myeloma. Does anyone have this diagnosis?

I was diagnosed with both Amylodosis and smoldering myeloma in June 2019 any hints on diet or activity I should be doing?

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@pro

I was diagnosed with both Amylodosis and smoldering myeloma in June 2019 any hints on diet or activity I should be doing?

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I have smouldering myeloma (mcus) they have never said any diet for this but check out mayo clinic diseases and symptoms. It give you also for https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178. I don't anything about that. Sounds like might be related but that is just a thought on my part could be totally wrong. I would do more research on some medical sites you trust. But keep trying they have done so much for mcus in the last few years.

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@pro

I was diagnosed with both Amylodosis and smoldering myeloma in June 2019 any hints on diet or activity I should be doing?

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@pro Welcome to Mayo Connect! We're glad you found us. We are patients/caregivers/family members here, offering strength and support to others, sharing what has [and has not!] worked for us. We cannot give medical advice. But we know that each of us is different and what works for one is not successful for another.

For information on amyloidosis try this website from the Amyloidosis Foundation https://amyloidosis.org/facts/ You didn't mention which type you have, so there are several options to look at and read up on. The response by @lkzvlk gives a link for information from Mayo Clinic

I was diagnosed with smoldering multiple myeloma officially in Nov 2019, and have quarterly testing done. Here is the link for Mayo Clinic information on multiple myeloma https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378
From WebMD, here is their article about diet and multiple myeloma https://www.webmd.com/cancer/multiple-myeloma/diet-blood-cancer-myeloma And from Medical News Today, their thoughts on diet https://www.medicalnewstoday.com/articles/321081#diet-tips

One thing to remember, is if you have other existing health concerns, you may need to "tweak" these suggestions to match to you individually. For example, I am also a Stage 3b kidney patient, so I need to watch my dietary protein intake, plus some other foods. A good rule to think about is the eat healthy, get proper rest and exercise, keep stress levels as low as possible.

How are you feeling these days? Are you seeing your specialist every few months?
Ginger

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@beepoop

I was diagnosed with MGUS in 2005 after my father passed away from MM. I was followed since then. Last summer I progressed to Smoldering myeloma. IGG kappa light chain.

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I have BIg kappa light chain too but said I had mgus??!!

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@cctoo

I have BIg kappa light chain too but said I had mgus??!!

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IgG!!

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@cctoo

I have BIg kappa light chain too but said I had mgus??!!

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@cctoo Sometimes the medical group will call it MGUS for insurance/blood test reasons, while your dr will say smoldering multiple myeloma. That has been my experience, anyway. I have IgM kappa light chain, and go in for quarterly testing this coming week, then the annual CT-scan and dr appt for review of everything on Aug 21st.

Do you follow any special protocols at this time?
Ginger

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@gingerw

@cctoo Sometimes the medical group will call it MGUS for insurance/blood test reasons, while your dr will say smoldering multiple myeloma. That has been my experience, anyway. I have IgM kappa light chain, and go in for quarterly testing this coming week, then the annual CT-scan and dr appt for review of everything on Aug 21st.

Do you follow any special protocols at this time?
Ginger

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No I do nothing!! Dr said .62 in mid region IGg kappa….what does that mean? All other blood tests normal except total protein….

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@cctoo

No I do nothing!! Dr said .62 in mid region IGg kappa….what does that mean? All other blood tests normal except total protein….

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Hello from PA. I have a history that may give you some help with perspective of your cancer. From 2002 until 2004 I was followed for MGUS. From 2004 – 2016 I was followed by local hematologist/oncologist for smoldering IgG Kappa every 2-3 months here and annually at Mayo Clinic Rochester. In 2016 my labs reached the parameters set by my Mayo physician and treatment was initiated. My two oncologists continue to coordinate care. Today I am in remission and being followed very closely. Having said all this, my overall take has been my choice of personal involvement. I have relied on my doctors for answers as I learned everything possible along the way. Armed with information, I became my own best advocate with all levels of testing and care. And I was always aware of what my choices were. Between appointments etc. I enjoyed life on my own terms. Operative word, “enjoyed”! I chose not to be held hostage by fear of something that might never happen. You, too, have choices. While those of us here on Connect must leave medical advice to your medical care providers, we can help you navigate the systems, offer ideas for direction from our own experience, and support you along the way. Will you let us know how things progress for you and continue to let us know where we can help? Peace, Nancy

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@1nan

Hello from PA. I have a history that may give you some help with perspective of your cancer. From 2002 until 2004 I was followed for MGUS. From 2004 – 2016 I was followed by local hematologist/oncologist for smoldering IgG Kappa every 2-3 months here and annually at Mayo Clinic Rochester. In 2016 my labs reached the parameters set by my Mayo physician and treatment was initiated. My two oncologists continue to coordinate care. Today I am in remission and being followed very closely. Having said all this, my overall take has been my choice of personal involvement. I have relied on my doctors for answers as I learned everything possible along the way. Armed with information, I became my own best advocate with all levels of testing and care. And I was always aware of what my choices were. Between appointments etc. I enjoyed life on my own terms. Operative word, “enjoyed”! I chose not to be held hostage by fear of something that might never happen. You, too, have choices. While those of us here on Connect must leave medical advice to your medical care providers, we can help you navigate the systems, offer ideas for direction from our own experience, and support you along the way. Will you let us know how things progress for you and continue to let us know where we can help? Peace, Nancy

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Yes, thank you….when I question …what does .62 in mid regionmeans? the nurse said that is amt. of M protein in blood…..it was 1.1 at my primary Dr's originally! So not sure nurse was right.

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Hi again. This is a factor that you can make sense of When you know which lab result they reference to answer you. For example, I keep a log of the few results that have meaning to me: hemoglobin, M Spike (protein), kappa free light chain, lamda free light chain, their ratio, and kidney function results. Others may have a different list. When I look at kappa free light chain I see the normal is 0.3300 to 1.94. My last result was 1.14. Pretty much in the middle of normal range. I have asked my doctor what that relationship is to other results so it can make more sense to me. When I was learning about all this, believe me I peppered them with questions. And still do! But this is how we take the mystery out of all that and begin to be our own best advocates. Some sample questions might be, what were you expecting to see?; when you looked at my report what caught your attention?; does this suggest the need for change? And so forth. Regarding your 0.63, the nurse might have been showing you a progress report, that you are seeing progress to reduce the protein they measured. Good, right? Does this help you think about your next appointment? Or even consider a call before then to clarify your interest? Never hesitate to ask if an unknown worries you. You deserve answers.
Hope this helps. Nancy

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Today I received an email from CURE, who posts articles regarding different cancers. As a multiple myeloma patient, that is the focus of the posts I get from them, and today there was a very interesting article, about treatment and remission. This is something to bear in mind when/if your disease progresses into a treatment stage.
https://www.curetoday.com/view/myeloma-the-first-remission-is-the-deepest
Ginger

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@gingerw

Today I received an email from CURE, who posts articles regarding different cancers. As a multiple myeloma patient, that is the focus of the posts I get from them, and today there was a very interesting article, about treatment and remission. This is something to bear in mind when/if your disease progresses into a treatment stage.
https://www.curetoday.com/view/myeloma-the-first-remission-is-the-deepest
Ginger

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@gingerw That was definitely worth sharing. How did it help you the most? Nancy

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