I have smoldering Myeloma. Does anyone have this diagnosis?

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

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

@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

IgG!!

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

@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

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.

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

Good morning, beepoop.
I have wondered if you got the information you hoped for, and if you have confidence to reach out in the future if you have questions or concerns. There is a community ready and willing to do all possible to be here for you.
Peace, Nancy

Hello again @beepoop. I am sorry about your father, and getting your MGUS diagnosis at that time must have been so difficult.
After my 2002 MGUS diagnosis, my Mayo doctor diagnosed Igg kappa smoldering myeloma in 2004. He established the number goal that would require treatment to begin, and he and my local physician followed my status until 2016 when I started treatment. For those 12 years I was very active in spite of spinal surgeries and anemia. But during that wait time, and now your wait time, there was major progress in blood cancer research. My current treatment options didn't even exist those 15 years ago. Or one year ago. I was told that we will manage it like a chronic disease, changing treatment as indicated. And that is what happens. I wish you the same peace of mind as you go forward. Your life has meaning and purpose, and I have found that doesn't have to change. Having faith, family and friends gives me such support that hope is ever present. I wish the same for you.
Blessings, Nancy