I have smoldering Myeloma. Does anyone have this diagnosis?

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

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

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

@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

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

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?

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?

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/

@wyom1998 My kidney disease is not related to the multiple myeloma, but to a very rare autoimmune condition. The oncologist who is treating me is using as light a dose as possible of the chemo, just so we do not upset the apple cart if it can be avoided, with my kidneys. Earlier this week my kidney function level was tested at 15%.

I will be curious to hear from you just how everything fares for you. You tske care, too!
Ginger

My team is not specifically treating mastocytosis, but feel that my bone marrow transplant process will address it. That is the part that has made me nervous. My tryptase levels have decreased under MM treatment so something is helping.
My bone pain and lesions continue to increase and I would like to treat, but am afraid of kidney effects.
It is a tough balance. Please take care and thanks for conversation.