Resources for MGUS: What reading is helpful for the newly diagnosed?

@amyboylan1 There is a lot of information on the web, and you can easily find your inundated. Trying to pick through what to read, what to believe, can be daunting.

The International Myeloma Foundation myeloma.org is an incredible source of information. As is Mayo Clinic and Cleveland Clinic.

It is important to remember that each of us has our own journey. Most of us do not progress beyond MGUS. And, if you have other health concerns, they can play a part in what happens.
Please ask away with any questions. And, take a look at the other MGUS discussions here.
Ginger

Thank you Ginger. Can I ask how long you’ve had MGUS?

@amyboylan1 I was diagnosed with MGUS in 2017. In 2018 it advanced to Smoldering Myeloma, and in 2019 advanced to active Myeloma. But a gentle reminder, my case is way out of the normal path! As mentioned by my medical team, I am an overachiever LOL
Ginger

Quite independently of my MGUS (which is not really a "diagnosis", just a statement really that is a bit irregular and might, or might not cause something). Where I come from the "U S" part of the term means "Uncertain Significance" so you might not have anything to worry about. Everybody is different though, which is why MGUS needs to be watchfully-waited to turn into something else, - which it might never do.
On your coffee question, again everyone is different. My GP suggested nearly 10 years ago, I should cut back on my 16 cups per day, which I did , so I now only drink 6 cups a day and try to have them finished by 3pm. It did me no harm as a younger person, and I'm not aware of any difference now, but I continue to believe that coffee like many other things has some good and some not-so-good qualities. Overall I think it is good but it is always wise to check with your GP or other suitable health professional

Thank you for responding to me. Have you had MGUS a long time?

Some of us with MGUS (8 years) take bioavailable curcumin to hopefully decrease inflammation and TNF (tumor necrosis factor: means fewer nasty cells growing in bone marrow). Check with a doctor before starting; it does have minimal side effects including with some meds. Turmeric contains curcumin, but it is in small amounts and it is poorly absorbed by the GI tract. So, I take turmeric supplements that have increased concentrations of curcuminoids, with lipid (fat) and/or peperine (an ingredient in black pepper) to improve absorption. Take the supplement with meals. There are a lot of different supplements out there because being anti-inflammatory, people with some arthritis and kidney disease also try it. I add turmeric root or powder to soups. smoothies, curries, brownies and such; it is related to ginger and adds a bit of flavor.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7144558/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5664031/

My MGUS has been known since 2015 so it's been around a while.
I had not been told by my GP that he was arranging an appointment with an oncologist/haemotologist so you will imagine it was a bit of a rude shock when the appointment turned up in the mail.

Like you, I was really concerned after MGUS was confirmed and tried everything for a lengthy period but my condition remained stable. I started removing supplements one by one until I learned that Turmeric was the only thing making the difference so I added powdered (sunflower) lecithin to improve the bio-availability of the turmeric powder and have remained stable since. Everyone is different. So what is good for me might not be for you. Consult with your medical team and take good care of yourself too. You need both. I also exercise a lot and that is probably one of the keys. Good luck and health for your future.

Thanks so much. I haven’t received much information from the doctors. The oncologist basically said live my life. I feel like there has got to be something more I can do. I have bought turmeric. Can you tell me what bio available Tumeric is and where I might get that and where I might find the Sunflower lecithin? I bought Tumeric pills at Costco. Looks like there is powder inside the capsule. Do you use a powder? Sorry to be asking so much but I think doing some of these things would make me feel like I’m doing something to help myself. How much exercise a day would you think is a good amount. My doctor said 30 minutes of walking 5 times a week but I would like to do more. Thanks for all your guidance. It’s been really helpful and has given me some hope.

Turmeric root has around 2-9% curcumin (also called curcuminoids). Get a supplement with the highest concentration of curcumin. Eat with food that has some fat/oil, and the "bioavailable" means that it likely has peperine (from black pepper) and/or lipid (fat) to help move the curcumin from your GI tract into your bloodstream. I use Extra Strength Qunol has 500 mg of turmeric per capsule and 18-22% curcumin [90-100 mg]. Gaia Herbs "Turmeric Supreme" has 36 mg/capsule (plus peperine). People in the linked study ate 4-8 grams of curcumin/day for years, so a LOT of curcumin. I take 1 gm/day of curcumin; we'll see if it ramps down my IgA and Kappa on my next bloodwork. https://oatext.com/Long-term-follow-up-of-curcumin-treated-MGUS-SMM-patientsan-updated-single-centre-experience.php . I used to do 2 hours/day of biking (I'm 70) but got covid and long covid last year so walk an hour or more every day and some biking. Resistance training is good for keeping bones and muscles strong (weights, exercise bands, yoga...). Mentally escaping is important, meditation, hobbies, friends. ResearchGate has peer-reviewed papers on MGUS and a lot of other scientific topics (I'm a retired research scientist).

There are other way than piperine to make Turmeric bio-available. I personally use sunflower lecithin with Turmeric powder because the two powders mix easily. A UK university study (Oxford I think) found that lecithin makes turmeric as much as 30 times as bioavailable. Turmeric has been used as a medication for more than 3000 years. Even so, the limited knowledge we have of these events, I understand research into Turmeric is only recent but continuing suggests to me that the fresh turmeric root may be better than any alternative form. Best not to use without some medical team comment. You need to look after yourself and not rly on your doctors but you do need both.