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

Posted by amyboylan1 @amyboylan1, Sep 14 7:05pm

I am recently diagnosed. Could you tell me what resources or reading might be helpful. Also, has anyone heard that coffee is not good for us? I am really having a lot of anxiety and need to learn how to manage it. Any suggestions would be appreciated.

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singularity | @singularity | Sep 17 8:15pm
In reply to @amyboylan1 "Thanks so much. I haven’t received much information from the doctors. The oncologist basically said live..." + (show)
@amyboylan1

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.

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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.

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8positive | @8positive | Sep 20 5:12pm
In reply to @kayabbott "Turmeric root has around 2-9% curcumin (also called curcuminoids). Get a supplement with the highest concentration..." + (show)
@kayabbott

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).

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The most crucial aspect of exercise is doing it most days if you overdo then you might not feel up to it the next day. Just saying the turtle wins the race.

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singularity | @singularity | Sep 20 5:33pm

Dunno bout turtles, but I do agree that consistency is important. It's important to try for daily and it is just as important not to beat yourself up if you miss a day for any reason or no reason at all. If you miss 2 days in a row or more, cut back on how much you do daily and build up to that level again daily but at a speed your body is comfortable with.

The real secret to exercise is to keep at it.

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kakc19 | @kakc19 | Sep 21 6:33am

International Myeloma Foundation has great information on labs, MGUS etc. worth following up with that!
They also mailed me the hard copies as well which at 66 years old I appreciate!

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singularity | @singularity | Sep 21 10:40pm
In reply to @amyboylan1 "Thanks so much. I haven’t received much information from the doctors. The oncologist basically said live..." + (show)
@amyboylan1

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.

Jump to this post

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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1 reply
amyboylan1 | @amyboylan1 | Sep 22 12:37am
In reply to @singularity "What you can buy and where is different in different places. I buy my turmeric in..." + (show)
@singularity

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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Thanks. I saw they have the sunflower lecithin on Amazon. I started taking Tumeric with curcumin and black pepper. I am so worried. I wish I could not think about this for a day or two. I want to live my life. You’ve been really helpful and I appreciate it.

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singularity | @singularity | Sep 22 4:37am

Don't forget to give fresh Turmeric root a shot too, sometime. The researchers would not be researching it if they knew for sure already that curcuminoids were the whole story. Lecithin probably helps with other things too. My earlier point was that piperine (black pepper) is not the only way to improve the bio-availability of turmeric. Lecithin is probably as good and doesn't taste of pepper.

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