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

Hi! I’ve been diagnosed with having hemosiderosis of the spleen, hemochromatosis and a paraprotein in my blood. I recently had blood work done which showed, my light chain Kappa high and my quantitative free light chain kappa/lambda ratio was high, but the IFE showed no bands of restricted mobility (paraprotein). Indication: Monoclonal Gammopathy. I have kidney issues as Gfr goes down to 27 at it’s lowest and goes back up, never making it to 60, closest is 54. I have back pain, rib pain along with hip pain. I also have extreme exhaustion, which I start out tired and than it just hits me that I feel so exhausted that I can’t hardly walk, breathing isn’t good but I have a lot of edema with I take 100 milligrams of torsemide which helps. My oncologist/ hematologist says there’s nothing to worry about, but we never go over test results as he says he reviewed them and they are good and he’ll see me in six months. I wanna believe that, so I’m assuming if the ratio is high but IFE shows no bands of restricted mobility that it means normal. It’s just so confusing when you go to your doctor and he has allotted 10 mins for our visit so he’s in and out, but he’s the expert and I’m sure his other patients may have more important health issues. Can anyone who’s experienced my symptoms offer any encouraging words that will put my mind at ease. I trust my doctor or I did in the beginning of my journey but still sometimes we just need a encouraging boost! Thanks for letting me rant. Sometimes you just have to let it out!

En la mía también!😏

My team does not do urine. My PCP did a 24 hour urine when my M protein was discovered, but my oncologist/hematologist says that it’s unnecessary. At the time there was no M protein in my urine and since then, kidney function has been good.
So many plates spinning.

Happy Monday.

I was a medical social worker for the last 15 years of my career, and I find it offensive that your oncologist hematologist only allows you 10 minutes. You need to find a similarly trained physician who will spend the time with you to assure you about what is going on with your blood work. That’s not right. You’re very generous to think of the other patients but you need to be thinking about you and what you need.
Is there a support group in your home community or can you find someone on this board who is from your home community? Surely someone knows a physician that has some humanistic skills in your area.
I don’t want a physician who will gaslight me, or make light of my diagnosis and risk associated in treatment but I want a physician who will spend enough time with me to answer all my questions, and who I can trust to give me a straight answer while at the same time being kind.
You might want to consider getting a second opinion from a recognized treatment facility that specializes in multiple myeloma.
The nice thing about this board is that there is a wealth of experience in dealing with treatment for MGUS… Watching and waiting… Smoldering multiple myeloma and unfortunately also multiple myeloma. It’s good to know that I have support and people I can go to if I have questions but I am absolutely insistent that I have a doctor that spends the time with me needed to educate and me.

Thank you for responding, your empathy is very appreciated for what I’ve been dealing with. I really thought about getting a second opinion because I don’t know from our visits if I have an issue or not. I ask about the test results and as always get told I’m ok and he’ll advise me if something is wrong and the standard see you in 6 months. I do believe I deserve better and will take your advice. Thank you for your encouragement, maybe in the future I will get some answers on what is going on with my health and not feel as if I’m just there for my insurance.

Absolutely! You deserve some answers. Best of luck and let us know how it goes.

@lclark918 I echo what @pmm said in her post. You deserve to have answers. If your doctor is too busy, does he have a nurse practitioner on staff whom you can confer with, and get solid information on your situation? It may be a matter of explaining that you don't understand exactly what is going on, and you need to feel comfortable with the diagnosis. And, please, your health and case is just as important as the next patient!
Ginger

Thank you Ginger, I’ve actually tried speaking with the nurse but she’s just as hurried as the doctor. I think I’m going to try to get a second opinion and maybe it’s like he says that if there was anything that was critical to my health he would make me aware but it seems like I’m feeling worse and no answers to my questions it’s totally frustrating. Sometimes I feel like saying can I just stay home and you file it on my insurance. It’s really sad as I have trusted this doctor for sometime with my health, he was attentive the first few appointments but now I feel dismissed and unheard. I’ve done some research today and do believe I’ve found another doctor that may be able to help me understand my test results. Reaching out tomorrow to see if he is taking new patients. I appreciate you responding, wish me luck maybe there will be answers for me in the near future.

I have Kappa Light chains of 44 but you can bet my Dr will be answering MY QUESTIONS when I get there next week. I'm new to this thing but I'm also an RN so I believe that one must advocate for themselves, ALWAYS! You are very important and don't forget that. I'm a 20 year colon cancer survivor and I've never stopped asking questions and proving that WE can beat the odds if we stand up for ourselves!

My PCP initially found my MGUS late fall of 2022 and referred me to a hematologist. The first appointment was in January and the second in April with blood work for both appointments. The hematologist never went over any of the bloodwork results with me and when asked he said no worries you are very low level MGUS. The need to know and understand cannot be brushed off, it just causes more anxiety. So I got on Dr Google (there are some very good resources) and did a lot of careful research and in doing so found that the Mayo Clinic has developed a progression assessment based on their research into MM and precursor conditions. Anyway, turns out I’m at a high-intermediate risk of progression. Since following this group and the recommendations to others of finding a MM specialist, I called the Mayo Clinic in Jacksonville and they informed me they are not taking anyone with a MGUS diagnosis at this time. I discussed all of this with my PCP and I now have an appointment with a specialist at MD Anderson later this month. I’m hoping I get a much needed explanation and understanding of what’s going on and how this will affect me going forward. I am IgA Kappa with a very low M spike but a kappa / lambda free light chain ratio of 5.18.