I have smoldering Myeloma. Does anyone have this diagnosis?

I hope everyone saw that Mayo Clinic is hosting a free online webinar for patients tomorrow, Jan 8, 2022. Learn more here:
- Myeloma and You: A Day for Patients and Caregivers Webinar https://connect.mayoclinic.org/event/myeloma-and-you-a-day-for-patients-and-caregivers-webinar/

My active 82 year old husband was diagnosed with Smoldering Myeloma three months ago. We are in the watching stage, and he just had the second batch of blood work done. The plan is to do that again in three months plus another bone marrow biopsy. We live in the Twin Cities. Any thoughts or suggestions from other with this diagnosis?

Welcome @dbont, I'm tagging fellow members living with smoldering multiple myeloma like @beepoop @1nan @pro @lkzvlk @lfevold @gingerw and @cctoo into this discussion. You may also be interested in this discussion:
- Newly Diagnosed with Smoldering Multiple Myeloma: Watch & wait https://connect.mayoclinic.org/discussion/newly-diagnosed-with-smoldering-multiple-myeloma/

You may also be interested in this video with Mayo Clinic hematologist Dr. Kumar
– Multiple Myeloma: Smoldering, disease progression, and changes in approach: https://connect.mayoclinic.org/page/hematology/newsfeed-post/smoldering-myeloma/

For some people watch and wait can be disconcerting. I prefer to call it active surveillance. How do you feel about active surveillance as your primary treatment option?

Welcome!
I was diagnosed with SMM in Sept. 2020. I do blood work every three months and CT Full scan annually. I did add Curcumin 400x to supplements but please discuss with your Hematologist. I am in central Iowa and my Hematologist is at Mayo- Rochester. Look into Health Tree for Multiple Myeloma. https://healthtree.org/myeloma They have excellent free webinars that are very educational.
Linda

@dbont Let me add my welcome to Mayo Clinic Connect!

Watching and waiting in any situation can feel like you are not doing anything worthwhile, doesn't it? I totally understand that. Here, pull up to the table and have a cuppa tea with a couple of cookies. Having a diagnosis of smoldering myeloma is just as @colleenyoung suggested, active surveillance. There is nothing to be done while the numbers stay within certain parameters. Go on with your life as normal, and try not to look for things that might go wrong. Many of us place the situation on a back burner, accepting it as a matter of life.

How are you doing with all this? And how is your husband doing? Be sure to check with the social worker at his medical office for additional local resources if you feel the need.
Ginger

It’s good to connect with you all!
I am smoldering since January IGG lambda with 2 risk factors!
It is scary because I have had a steady increase since 10 years with a jump in 2022.
Besides polyneuropathy which is burning hands and feet I feel fine. I am currently on 8grams of curcumin 95%
I am hoping and praying that the progression slows down or stops.
Mascot

One more welcome here @dbont . Colleen kindly invited me to meet you and share my thoughts with you. I was diagnosed with MGUS in 2002 and smoldering myeloma in 2004. I have aspects of that journey in my profile, but know that I was in care of a specialist at Mayo Clinic in MN and monitored every 3 months by my local oncologist until 2016 when treatment was first indicated. I was one of those "back burner" patients Ginger mentioned who continued to live life without concern until it was time get to work. I was not about to be held hostage by fear, especially fear of something that might never happen. Fast forward to February 2023. I am 81 years old, coming out of remission and again watching and waiting. And the back burner has been used again. We all will suggest that you arm yourself with information, stay close with your faith based sources if appropriate, have a support system, and be your own best advocate. I will also suggest that you make Connect a reliable source of information, encouragement, and strength. Please consider help that has come since your initial contact, and let us know if we are meeting your needs and what else we may do for you.
Peace, Nancy

You mention you started treatment for smoldering myeloma in 2016. Can you share your treatment ?

It's been a process for me. First comes lab results for tests done for a totally different issue which reveals "abnormalities". So you get the recommendation to see an oncologist. Which, for most of us, is the same as getting a death sentence. You see an oncologist, get more blood tests, and are diagnosed with Asymptomatic or Smoldering Myeloma. You're told it's not quite cancer but ... and are given information regarding SM including the big one: the % chance it might progress to Multiple Myeloma each year. So you're started on quarterly blood/urine tests, perhaps have a full body x-ray and/or a PET CT scan. Your results may be stable or show degradation. At first I obsessed that I had SM but now I live with it stress-free. It's out of my hands except for trying to live as healthy as I can. Best to you.

I have Smoldering Myeloma, begain 14 years ago. when a M spike was found, told that I would probably always have MGUS, then they detected iron deficiency anemia. Had blood transfusion (20) and a lot of iron infusions. Now, I am stable but they are reconsidering the iron defiency anemia. I am guessing it may be a form of hemolytic anemia. I was on 4 month follow-up for many years and now on 3 week follow-ups. My hemo-onc and the PAs want me for testing but are mum about what I have. I want to decide before I move in the summer to Las Vegas. They don't anyone experienced in MM there, so will try to go to CA for checkups on the MM and have local hemo/onc deal with whatever I have,