1. < Blood Cancers & Disorders

MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio

Posted by jart @jart, May 15, 2022

The above was found in his blood serum test but follow-up 24 hr urine test showed only 2 free Kappas. Has anyone had experience with this? Does the urine test supersede the serum testing? Either way, is there anything to do other than “watchful waiting?”

BTW, he also has Dysautonomia (Diabetic T2).

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harty | @harty | Jan 4 3:42pm

I have researched the follow up of MUGUS.
Clinical trials are finding modifications to just monitoring. These seem to be in 2 categories:
First investigating new markers of progression. Much of this research is genetics.
Second is investigating agents that show promise in slowing the progression. One such agent is curcumin.

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1 reply
Linybug | @garygeezy | Jan 20 9:13am

Last year routine blood was not my normal results. My kidney numbers were dyalis level. I was anemic potassium very low. I never had any issues w my kidneys and no family history of cancer or kidney disease. I go for bw every 6 wks n follow up appts w kidney, hemotologist and multiple myeloma specialist. My bone marrow biopsy was 8-10%, my kidney biopsy did nit indicate any mm but sarcadosis was listed. My case is difficult to diagnose. I am stressed when I wait for my bw results my light chains are high. Specialist thinks I have MGUS. I had petscan of whole body no lesions, CT scan was good. I had a bone density today hoping for good results. Thankfully I currently do not have pain but this is scary because there is no cure. Also my husband is suffering from radiation cystitus and there is no cure. I keep praying for strength and make most of every day.

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Linybug | @garygeezy | Jan 20 9:29am
In reply to @colleenyoung "@jart, I would like to bring @gingerw @justnate @loribmt and @packgb19 into this discussion to help..." + (show)
@colleenyoung

@jart, I would like to bring @gingerw @justnate @loribmt and @packgb19 into this discussion to help answer your questions or even to help you to formulate questions to ask the cancer care team.

I can see that you are concerned about the treatment protocol being "only" watchful waiting. I prefer to refer to this as active surveillance. Watching waiting doesn't mean do nothing. Instead it refers to not administering treatment that could potentially do more harm than good in the early stages of a condition that may progress very slowly.

Did you discuss the blood and urine tests with the doctor yet?

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That is exactly what my team of Dr's say

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kayabbott | @kayabbott | Jan 21 8:09am
In reply to @harty "I have researched the follow up of MUGUS. Clinical trials are finding modifications to just monitoring...." + (show)
@harty

I have researched the follow up of MUGUS.
Clinical trials are finding modifications to just monitoring. These seem to be in 2 categories:
First investigating new markers of progression. Much of this research is genetics.
Second is investigating agents that show promise in slowing the progression. One such agent is curcumin.

Jump to this post

I take ~3 grams of bioavailable curcumin/day for MGUS. Bioavailable means it has peperine (found in black pepper) and/or lipid (fat) that helps absorption, because otherwise curcumin is very poorly absorbed. Don't know if it helps; the curve of my Kappa proteins has flattened a bit, but that could be other. There is research now on the curcumin, how it affects TNF (tumor necrosis factor), and if there are modifications to the curcumin that could increase absorption and effects on TNF.

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1 reply
Linybug | @garygeezy | Jan 22 10:24pm
In reply to @colleenyoung "Catherine, I can understand being too afraid to look and I think it might be a..." + (show)
@colleenyoung

Catherine, I can understand being too afraid to look and I think it might be a good idea to wait until you can discuss with your doctor. Some people like to get the results as soon as they are available, but interpreting them is best done with a professional. You don’t want to worry unnecessarily.

How are you doing?

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My Dr's suggested that I wait too. I receive messages that results are ready & I get so nervous. I have bw 2/3 & 24 hr urine testing. Thanks for your kind words.

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gweiman | @gweiman | Jan 23 9:21am
In reply to @kayabbott "I take ~3 grams of bioavailable curcumin/day for MGUS. Bioavailable means it has peperine (found in..." + (show)
@kayabbott

I take ~3 grams of bioavailable curcumin/day for MGUS. Bioavailable means it has peperine (found in black pepper) and/or lipid (fat) that helps absorption, because otherwise curcumin is very poorly absorbed. Don't know if it helps; the curve of my Kappa proteins has flattened a bit, but that could be other. There is research now on the curcumin, how it affects TNF (tumor necrosis factor), and if there are modifications to the curcumin that could increase absorption and effects on TNF.

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What product are you taking?? An over the counter form of curcumin?

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1 reply
kayabbott | @kayabbott | Jan 23 12:32pm
In reply to @gweiman "What product are you taking?? An over the counter form of curcumin?" + (show)
@gweiman

What product are you taking?? An over the counter form of curcumin?

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I take Qunol brand, which is online, Walmart, and other places, but there are various brands out there.

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1 reply
gweiman | @gweiman | 6 days ago
In reply to @kayabbott "I take Qunol brand, which is online, Walmart, and other places, but there are various brands..." + (show)
@kayabbott

I take Qunol brand, which is online, Walmart, and other places, but there are various brands out there.

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Thanks I just orders some myself. So do you take 3 times a day to total 3000mg?

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1 reply
kayabbott | @kayabbott | 6 days ago
In reply to @gweiman "Thanks I just orders some myself. So do you take 3 times a day to total..." + (show)
@gweiman

Thanks I just orders some myself. So do you take 3 times a day to total 3000mg?

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I take one each with breakfast, lunch, and dinner, just in case spreading it out is easier on GI tracts (check side effects before starting) and helps absorption. Don't know if it helps, but it doesn't cause me any side effects and it is considered anti-inflammatory.

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anjill22 | @anjill22 | 5 days ago

Hi so I was diagnosed with MGUS about 5 yrs ago and my kappa and lambda are always fluctuating they are both high but one higher then the other I have stage 3 kidney disease and fatty liver disease I also have coronary artery disease what are the signs when MGUS turns into mm I get blood work every 3 months and also my iron levels are up and down

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