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

Posted by jart @jart, May 15 2:43pm

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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@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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@jart When I have had the 24-hour urine test, they are looking for protein levels, so i cannot speak to findings like you have in that test.

MGUS typically is a "watch and wait" situation. Yes, it may put you on edge, but there is not any positive if you are worrying all the time! In my case, my myeloma progressed rather rapidly from MGUS to Smoldering Myeloma, to mutiple myeloma, in the course of 2 years. That was highly unusual, from everything I have researched, and my comorbidities no doubt played a factor. The very big majority of people go for many years without any progression of MGUS, and that is why a 3 or 6 month re-check protocol is put in place.

I hope this eases your mind.
Ginger

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@gingerw

@jart When I have had the 24-hour urine test, they are looking for protein levels, so i cannot speak to findings like you have in that test.

MGUS typically is a "watch and wait" situation. Yes, it may put you on edge, but there is not any positive if you are worrying all the time! In my case, my myeloma progressed rather rapidly from MGUS to Smoldering Myeloma, to mutiple myeloma, in the course of 2 years. That was highly unusual, from everything I have researched, and my comorbidities no doubt played a factor. The very big majority of people go for many years without any progression of MGUS, and that is why a 3 or 6 month re-check protocol is put in place.

I hope this eases your mind.
Ginger

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Thank you, Ginger. I know MGUS can lay dormant for one’s whole life. What I’m wondering about is the connection to Free Kappa Light Chain which is now quite high, as is the Kappa/Lambda ratio. I’m interested in learning if the two are connected and, if so, how … and what does it mean? Smoldering MM or Active. He sees hematologist tomorrow so trying to become more informed in prep for the appt.

I’m sorry to hear your situation progressed so rapidly. Sounds like you have a very good attitude. You have my admiration.

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@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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“Watchful waiting” is a term used sometimes in prostate cancer. So I know, if that’s the outcome this time, it means only that there will be regular checkups for the time being.

Doc appt with hematologist tomorrow. Am sure he’ll address all of it. Up til now, we’ve been going thru extensive testing with neurologist (Dysautonomia diagnosis along with B12 deficiency anemia). She’s now turning all other results back over to hematology.

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Dear friends,
Any change in our health can be startling and cause us to feel concerned. I like Coleen’s reply. For seven years I have been keeping track of IgM kappa MGUS. Mine is considered stable while it gradually increases. From researching peer-reviewed studies online, I gather that increasing weight can be a factor in MM progression. So preventing increase may be one way to be proactive.
Even though I see my hematologist only every six months, it is important to find one I like. The fifth one tried was a charm. Good luck with your appointment.

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Anyone with high 28.9 kappa but lamb a 24.1
I also have Undifferentiated Connective Tissue Disease . I have MGUS but no m spikes for a year . I keep reading about Kappa Myeloma , is that a disease all it's own ? My hematologist says as long as ratio is fine so am I .

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@confusedkoala

Anyone with high 28.9 kappa but lamb a 24.1
I also have Undifferentiated Connective Tissue Disease . I have MGUS but no m spikes for a year . I keep reading about Kappa Myeloma , is that a disease all it's own ? My hematologist says as long as ratio is fine so am I .

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@confusedkoala As I recall from studying my own situation, there is too much emphasis placed on just the kappa-lambda ratio. Truth is, that ratio is very important, BUT only as long as both K & L are within the target range. If EITHER slips out of range, that is a danger sign and should be investigated much farther. Or, if only the proBNP blood protein gauge is used, and not the NTproBNP, your hematologist needs a little education. And the sFLC (Bindings) is critical. oldkarl

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Unfortunately my sister died of multiple myeloma 5 years ago and protein was found in my bone marrow and I go every three months to check the m Spike. I never feel like I know the difference between what's going on with my undifferentiated tissue disease or the issue with my blood work. I feel like when I mention the things about the free Kappa myeloma I'm just ignored, I really don't want to make a mountain out of a molehill but I do not want to end up like my sister who's her come after 5 years of this horrible disease. Thank you so much for listening and taking the time to answer me I really do appreciate it and if you have any other insights please feel free to share as I feel sometimes like I'm all alone in this

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@confusedkoala Hi, CK. Believe me, you are not alone in this. You may not be getting the support from the medical community you need, but you are not alone. I am in about the same boat. One of my sisters has died of myeloma of some kind, two others are close to death. 5 of the nieces and nephews are on the close death road, and I have dX of Gelsolin and several other diseases LGMD, leukemia, CKD, and have had 55 cancer-related surgeries and other procedures. Only one doc in the world seems to care, and he is 2,500 miles away. But we who have these buckets of crap, or have devoted our lives to the support of this community, have to cling together. So unload on us whenever you need to. Know that most of us will read every word you print, whether we respond or not. And if we have a thought we believe will be helpful, we will tell you. oldkarl

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I have mgus and for 2 years my monocytes, lymphocytes, and leukocytes absolute are high..and now have enlarged lymph node in armpit and getting biopsy on 8th june….scared might be lymphoma of some kind….also ratio was high now..never feel really well. Have awful pain, low fever low in abdomen like bladder infection. Dr said all blood tests normal!!!!!

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@cctoo

I have mgus and for 2 years my monocytes, lymphocytes, and leukocytes absolute are high..and now have enlarged lymph node in armpit and getting biopsy on 8th june….scared might be lymphoma of some kind….also ratio was high now..never feel really well. Have awful pain, low fever low in abdomen like bladder infection. Dr said all blood tests normal!!!!!

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@cctoo, I hope you get to the bottom of this. What were the results of the biopsy?

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@colleenyoung

@cctoo, I hope you get to the bottom of this. What were the results of the biopsy?

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Have biopsy tomorrow… Please 🙏

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