Does anyone have any info on MGUS treatment or risk of progression?

Nick:
I can completely relate to everything you said. It’s a very normal human reaction. I was diagnosed about 2 years ago, and so far stable with labs every 6 months now. I don’t have an answer for how to manage the anxiety. Educate yourself but don’t over do it- especially use reputable sources for information. Much on line is out of date & this area is exploding with new research.

Get a specialist who treats plasma cell diseases and is experienced.

There are a few clinical trials ongoing to see if MGUS can be stopped in its tracks- but it’s got high risk patients only.
They’re looking at the possibility of the following:
1. Curcumin
2. Metformin
3. Plant based whole food diet
4. One more?

I’ve started taking 1gm curcumin a day to see if it can reduce inflammation. I’m almost 65 but been very healthy all my life so this is a shock.

This is a great source of support. Try not to let it take over your life.

Hi Nick,
Reading your post and your age brings tears to my eyes. I know it's not much comfort to say, but I'm right there with you in the anxiety. I'm glad leslie posted about the trials above. I truly think there are things we can do to try to prevent progression. I've been sniffing around the medical literature and saw some papers that talked about Metformin as well. One author wrote that progression prevention should be given more attention, and that Metformin has relatively few side effects so is worth the clinical trials. Obvi work with your docs before taking any meds and supplements. At some point I hope to organize my collection of journal articles and will ask the moderators whether I can share a list of links.

Re. anxiety/mental health: As a newly-minted psychotherapist and therapy client, I've been doing some Internal Family Systems (IFS) work on identifying and then working with the parts of me that frantically protect me, like the "researcher," "the distractor," and the "worst case scenario mist." I've had mixed results with some success. This morning was the first time I permitted myself to really feel those feelings of fear and anger - the ones that my protectors were hoping I'd avoid. It wasn't attractive and I probably said some awful things, but it felt more authentic than "thought-stopping" and other behavioral techniques. So finding a good therapy that fits with your approach may be worth a shot. Acceptance-based therapies like ACT and DBT may be helpful.

Joining a local MM support group has offered mixed results as well - I've met wonderful folk (I'm the baby of the group) but am probably also exposed to the other side of the fence a bit more than my liking. However, the networking benefits are real! If you find a MM support group and join with MGUS, you get a gaggle of elders with a wealth of recommendations, experience, and connections 😀

Keep us posted.

Thank you so much Leslie. Your reply is much appreciated. I'll have a look at the studies you mentioned and do my best to not let it take over.
Best wishes and positive thoughts to you.

Thank you so much for your reply. I'll have a look into Metformin. I'll see what I can find in the way of support groups. I'm sure they would be really helpful. I hope you're well and coping okay. Best wishes and positive thoughts to you.

Hi @nick86, there are many discussion about MGUS that you may also wish to explore. In particular, I encourage you to join these active discussions:
- Does anyone else have MGUS?
https://connect.mayoclinic.org/discussion/mgus-diagnosis/
- I am newly Diagnosed with MGUS.
https://connect.mayoclinic.org/discussion/i-am-newly-diagnosed-with-mgus/
- Question to ask about MGUS Diagnosis
https://connect.mayoclinic.org/discussion/question-to-ask-about-diagnosis/
-
See all discussion from these support group search results: https://connect.mayoclinic.org/search/discussions/?search=MGUS

I think part of what you are feeling has also been coined "survivor's guilt". It's okay to have dodged a bullet and to not have a more dire diagnosis. Having said that, you're wise to learn about MGUS and connect with others. Cheers.

Thanks so much Colleen

Hello Nick, welcome to the MGUS forum. I think you perfectly describe the reaction we all have when we hear about that interloper M protein hanging out in our bodies.
Then you start your Google searches and read the glut of sometimes contradictory information. Just like that ONE negative comment you read on your annual work evaluation, what you remember is the glass-half -empty analysis.
Then the anxiety sets in.
Anxiety, while it’s a pretty normal response, is not your friend. When I was first diagnosed I couldn’t eat. Couldn’t sleep and my white count responded like I had a soon-to-rupture infection going on in my appendix. In short, I made myself feel sick.
What helped was information from my physician. He calmed me by arming me with data.
1. The statistics are in my favor that my MGUS will not progress.
2. He will watch my numbers and be prepared to treat progression.
3. Typically, MGUS is a benign condition. Most people are symptom free. You will read on this forum that many people have symptoms, the genesis of which are believed to be this blood disorder. Stick to what you know about YOU. Don’t carry the burdens of others as your own.
4. I am 71 years old, and I am likely to die of something else. Now I know you’re a young person, but I have probably had MGUS for decades, and it was undiagnosed. MGUS is almost always diagnosed by accident when they are looking for something else.
You have to change your thinking, and live with MGUS. Emphasis on the word LIVE. Worst case scenario, and your MGUS progresses to smoldering or multiple myeloma, the progress that they have made over the last decade is amazing. This is no longer a death sentence. So enjoy your life. Don’t let fear rob you from the enjoyment of each day.
Healthy diet, exercise, friends, family and fun. Great prescription. Bonus: (!) you get to see your humorless oncologist/hematologist regularly who will draw blood and scrutinize it to guard against progression. I feel like I get better healthcare than anyone I know.
Having said all that, I’m so sorry that you have to be burdened by this. And I’m glad you found your way to this forum. There are some very smart and compassionate people here.

Patty

Dear Patty, I cannot express how much I needed that today. I have gotten into terrible habits with googling and have ended up in a mess. Your very kind and wise words are just what I needed to hear. From the bottom of my heart thank you 😊

@nick86 Exactly what @pmm said! MGUS is not a death sentence. I did not follow the normal course of things, but then I never have, so using my example is a poor thing to look at. MGUS in 2017, followed by smoldering myeloma in 2018, and myeloma in 2019. As my oncologist and I say, "I am an overachiever"!

Do not go down the Dr. Google rabbit hole! It will lead to sleepless nights and hours-long searches on the internet, cycling through some unreliable sources for information. We are here to support you, answer your questions, and although we are not medical doctors nor able to give medical advice, we will tell you our experience. Some of it will give you a head nod as you relate to it, other info won't. And that's okay.
Ginger

Thanks so much Ginger. I'm very inspired by your positivity in the face of all this. The Googling is something I definitely have to work on and I will do my best to try. It's both a comfort and a source of anxiety. I hope you have a great day and thank you 😊