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Resources for MGUS: What reading is helpful for the newly diagnosed?
Blood Cancers & Disorders | Last Active: Sep 22 4:37am | Replies (17)Comment receiving replies
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.
Replies to "Thanks so much. I haven’t received much information from the doctors. The oncologist basically said live..."
How much exercise really depends on so many things, including many you can't alter, like age and gender and possibly some other ailments of affected physical condition.
Every-body is different. I have always been active and made good health and exercise, in particular, a priority years ago. I have 7 different exercise regimes and I'm happy if I get 4 out of 7 done daily. Two of those can be done in just under 2 minutes each. Both include stretching and both include short isometric periods. Just about everyone in the age group where we get told about MGUS can find 2 minutes. One is a standard 6-minute walk test. When I do it I do two (one in each direction). One is a 5km walk which takes about 50 minutes and another is to row my small boat around the speed limit sign outside when weather permits.
What you can buy and where is different in different places. I buy my turmeric in powder form (which is probably not a good as the fresh turmeric root), from any store that supplies asian, especially Indian food products. I also buy sunflower lecithin powder usually on-line form whichever supplement supplier has it at the moment. Most of it originated in Ukraine but that has become difficult in the last couple of years. As for exercise, the answer has to be "It depends". I have always been active and do about 1 hour per day. What it depends on is how active you have been and your age as well as your appetite for exercise. Half an hour per day or even 3 times a week would probably be the minimum for me but might easily be the maximum for you.
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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).