Kappa chain and K/L ratio keeps increasing

Posted by dmdinapoli81 @dmdinapoli81, Mar 5 7:09am

I was diagnosed with Kappa IGG MGUS in 2020 but every blood work since then have shown my kappa chain and my ratio have increase, my IGG has increased, they never settle or decrease. My M-spike is 1.2 or 1200(labcorp or quest) my kappa is over 90 and my ratio is over 7.5. I have not done a BMB and its been 4 years since a skeletal survey. Unfortunately my Hemonoc passed away suddenly and the practice is now changing hands.

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msh466 | @msh466 | Mar 5 12:27pm

Who is overlooking your care and lab results. Every six months and your lab values seem to be normal according to Mayo. 2/20/20 except the bone marrow part would need to be done. Not sure how often they do them either MGUS. I have SMM and am considered low risk with 15% PC in bone marrow. There is some fluctuations in lab work results but if you are seeing a trend upwards maybe a bone marrow would be in order.

dmdinapoli81 | @dmdinapoli81 | Mar 5 6:29pm

In reply to @msh466 "Who is overlooking your care and lab results. Every six months and your lab values seem..." + (show)

I do get blood work every 6 months. My numbers have tripled in the past 3-4 years.

msh466 | @msh466 | Mar 6 9:35am

MGUS needs to be watched and monitored. If you get labs drawn yearly and they tweak up a little over time it would be a good thing to get an oncologist involved to review labs and set a course of action.

kayabbott | @kayabbott | Mar 7 8:02am

I was diagnosed with IgA Kappa MGUS 8 years ago (I'm 70) and my numbers ramp up a bit with every 6 months bloodwork. My kappa is about 300 and kappa/lambda is 28; the BMB I had a few months ago had 15% plasma cells. Ten percent is generally the boundary for SMM but my oncologist says still MGUS due to absence of bone lesions or other damage; he says kappa will need to be in the thousand(s) to be SMM. He is kind of perky (I think of him as Dr. Ken Doll). I take more than 3 gm/day of bioavailable curcumin (Qunol), and my kappa curve has flattened a bit. Don't know if curcumin helps, but I'm fine being a lab rat. Every day I get in some aerobic and resistance exercise, try to escape into books and other interests, get enough sleep, and destress about things I have little or no control over (and screaming into pillows sometimes helps).

Patty, Volunteer Mentor | @pmm | Mar 7 8:55am

@dmdinapoli81
welcome to the Mayo Clinic Connect blood cancer and disorders discussion. I'm so sorry your provider died. I haven't lost any to death yet but many have retired. I guess that's what comes from being an older patient. I'm 72 and was diagnosed with MGUS about 3 1/2 years ago.
as other members have noted, it's important to have the right provider. Your first challenge will be to find someone in whom you can place your trust to get appropriate treatment. We all look at blood work because that blood analysis gives us some tangible information about possible progression, but your provider should also be looking for bone lesions which would be another indication that your MGUS has progressed. I get scans annually.
It's important to have a talk with your hematologist/oncologist about progression. Your physician will look at your health history and current coexisting conditions if you have some. That will factor into treatment planning. It's also relevant to your physician determining what "numbers" would cause him or her to be concerned. That's why what others have been told may not fit for you.
I try to focus on the things I can't control such as diet, exercise, and getting good medical care from my PCP and my hematologist/oncologist. My PCP stays on top of my blood work as well looking at my blood pressure and overall health. I feel like I'm doing what I can to stay involved in life and live it fully.
Where are you in the process of finding a new hematologist/oncologist and when will you be able to get into see him or her?

dmdinapoli81 | @dmdinapoli81 | Mar 12 9:36pm

I was diagnosed with when I was 36, and I have not had a skeletal survey since then. I am now 43. I have not had anything additional besides bloodwork and yearly 24hr bence jones. I have found a Hemanoc that is close but have also found one that specializes in all things plasma cell disorders.

andigold7 | @andigold7 | 6 days ago

Sorry to hear that.
Hoping you find an oncologist with compassion, hope and knowledge ♥️

harty | @harty | 4 days ago

In reply to @kayabbott "I was diagnosed with IgA Kappa MGUS 8 years ago (I'm 70) and my numbers ramp..." + (show)

Seems like some of the curcumin studies went up to 3 gm 2x/day? What does your doc say about curcumin?
Greg Hartman

kayabbott | @kayabbott | 4 days ago

In reply to @harty "Seems like some of the curcumin studies went up to 3 gm 2x/day? What does your..." + (show)

Mostly that it can't hurt to try it. Large doses of turmeric can have side effects in some people and does thin the blood, so check with a doctor/pharma before trying. Mostly I just eat a healthy FODMAP-esk diet, get enough exercise and sleep, avoid stress, and find something to look forward to every day. Hopefully research on the effects of curcumin on TNF and other cancer markers are not part of the medical research chopping block. My Kappa curve did decrease some after 1 gm/day of curcumin, but that is just anecdotal because MGUS numbers can ramp up and down. https://pmc.ncbi.nlm.nih.gov/articles/PMC10966979/ https://pmc.ncbi.nlm.nih.gov/articles/PMC9301229/

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