What to think when only free light chain ratio is abnormally high?

@georgiagurl I concur with @wesleym. Starting treatment is a decision best weighed using all the diagnostic information and hearing about the merits of treatment as well as watchful waiting.
I find waiting for test results nearly intolerable so hugs. I’m so glad you are getting a second opinion as you really have not yet received a first from your actual physician.
Deferring to a nurse practitioner for such a weighty discussion may be simply convenience, but that would not sit well with me (even though my nurse practitioner has a MUCH better bedside manner than my Hem/onc doc. 😉).
Do advocate for yourself and get the information you require in order to make this weighty decision.
Will you let me know how this goes for you?

@georgiagurl I am going to weigh in here and agree with @wesleym and @pmm that an actual doctor visit with diagnostic results are in order.
I will however say that treatment, if I am reading those numbers correctly (I am not an MD) cannot wait forever.
I say this because of the recent event with high light chains and my husbands kidneys.
I would add that a call to the current doctors office to find out if this appointment is with the doctor might be helpful.
This in addition to a second opinion at the cancer center.
I know this is a crazy ride but try to stay in the fight until you get all the results you need. It is amazing how much better we felt once we knew all the particulars of my husbands myeloma, and the plan moving forward.
Do you have your appointment yet at the cancer center?

@pmm I will post here and let you know how it goes. Thank you for posting here. I see that you are a volunteer mentor; I think that is awesome.

@auntieoakley I see that you are also a volunteer mentor and that is an awesome thing for you to do. I don't have my appt yet at the cancer center. They are supposed to call me by today to set up. I agree the light chains are very high and that they can impact the kidneys but my egfr is at 76 so they are above the concerning number of 60. I keep thinking that since I only have one of the R-ISS myeloma events that I must be smoldering mm (which the Bone Marrow pathologist said in his report). I also know there is much debate over when a smm patient should begin treatment. I think the second opinion at the Cancer center should help weigh the importance of each test. As an aside, I worked in the insurance industry for over 27 years and I thought we had a million acronyms. But the acronyms I have encountered in researching this disease far surpasses my old industry!

Hello! I've just come across this thread in my research for more information about light chain myeloma. I was diagnosed with MGUS almost 4 years ago, but it's been watch and wait with just blood work, no bone marrow biopsy yet.

But I continue to have the CRB symptoms out of the CRAB (had anemia but another iron infusion supposedly fixed that again), slightly elevated kappa free light chains, slightly elevated k/l ratio, normal lambda. Most other blood work is normal except slightly elevated calcium, creatinine, always low alkaline phosphatase, and high ferritin.

My general oncologist still refuses to do a bone marrow biopsy or any other testing beside the "watch and wait" blood testing, because my k/l ratio is below 100.

I am unable to travel to see a myeloma specialist, not sure what my next steps should be.

@georgiagurl I am very interested to know your outcome and how things are going for you. I hope you are doing well!

@siouxbee19 I am currently in a watch and wait situation as you are. I was given a bone marrow test because my light chain ratio was over 100. My ratio then went down and the kappa level has dropped significantly on its own (from 89 to 65; still high but getting lower every month!). My ratio has gone up to 134 again but only because my lambda went down. So, still watch and wait. You should try to travel to see a specialist because a specialist can determine if you need a bone marrow biopsy. It is important to do this; I highly encourage you to seek one out.

@siouxbee19
Yes! I agree with (@georgiagurl so glad to know you are doing well on your MGUS journey)
in that a good diagnostic workup by a hematologist/oncologist is a good investment in your wellbeing. You may well decide that a bone biopsy is not necessary for you at this time but it’s good to have those eyes on your total health picture. The specialized training has proven invaluable to me in making my own healthcare decisions related to MGUS.
I’ve lived in areas that were poorly served by healthcare professionals before and it’s a commitment for sure to travel, but in this case, it would be well worth your commitment.
The Mayo clinic is one of many medical facilities that have hematologist/oncologists located throughout the country.
I am fortunate to have a large teaching complex and a cancer care facility in my city, but I would travel for a second opinion should my MGUS progress. The regional health facility professional would coordinate treatment with your local provider. In the unlikely event that your MGUS progresses, it would be optimal to have this relationship in place. Does that make sense?
Patty