Mayo Clinic Connect
Multiple Myeloma- I have smoldering Myeloma. Does anyone have this diagnosis?
Hi I have Smoldering mm since last June ,2018
Hi @beepoop and welcome to Connect. You may have noticed that I moved your post to the Blood Cancers & Disorders group so that you can connect with others who have multiple myeloma.
I wanted to introduce you to @1nan who has experience with multiple myeloma and may be able to offer you support.
@beepoop how have you been feeling?
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Hello @beepoop. You may be interested in checking out the following discussion on multiple myeloma as well, https://connect.mayoclinic.org/discussion/multiple-myeloma-1/.
Sent to wrong person Justin.
Hello@ bepoop. I am Nancy, and have had significant history with myeloma. Can you tell me about yourself, when and where you were diagnosed? I hope you have been reassured that there is much cause for hope as you follow this diagnosis into your future. My journey started in 2002, so I want to give you all positives possible. But first, about you.
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.
I am trying to learn all I can
Thank you,. I just feel tired otherwise ok. Lots of new things going on in Myeloma world. Hope for the future
Liked by Nancy, Volunteer Mentor
@beepoop …I also have been diagnosed with MGUS, about 2 years ago. Also Igg kappa. It seems to have stayed the same except for fluctuations in kappa/lambda ratio. Of course no treatment at these levels. What I'm surprised about your diagnosis is that many years have passed until it became smoldering. I see it can spike after a long time?? I always say, I'm gonna quit testing since it's going on close to 3 years of being stable. Well, I guess not!
I do have severe osteoporosis, and experience sudden tiredness and aches. But I'm rather active..just hits out of the blue. I also get widespread rashes, that drive me insane and cause awful side effects. Mayo continues to do biopsies and monitor everything.
I try best to eat lots of dark greens and broccoli to keep blood healthy. If my iron levels should drop(not sure if yours did) I would increase iron rich foods with vitamin C, or any citrus for better absorption. They say MGUS, or Smoldering is like a time bomb…but I say, no worries, cross that bridge if we get there. Yes, I heard treatment is promising. My best to you!
Liked by Nancy, Volunteer Mentor, Ginger, Volunteer Mentor
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.
Liked by Ginger, Volunteer Mentor
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.
I was diagnosed with both Amylodosis and smoldering myeloma in June 2019 any hints on diet or activity I should be doing?
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.
@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?
Liked by Colleen Young, Connect Director, Nancy, Volunteer Mentor
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