MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio
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).
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Hi. I do not see a pt. But I have 3 hematologist / oncologists.
I'm headed to mayo so hopefully they can answer all of my questions.
Thanks for getting back to me!
I have an appointment tomorrow for Consultation regarding my ProNueoporty condition
Yay! I hope your appointment goes well. Let me know how you fair with it.
@rebeccaakabeck
How did your Mayo visit go?
@anjill22
greetings! I agree with @kayabbott in that none of us are prepared to interpret your lab results. Your best bet is to find a hematologist/oncologist in whom you can place your trust. Even if you and I have the same lab results, our overall health will be different because of coexisting conditions, age and physical stamina.
It seems that there is a lot of variation in treatment strategies among physicians as well. When I was looking for a oncologist who could guide me in my MGUS journey, I looked for someone who treats multiple myeloma and is very conversant with the spectrum between MGUS and full-blown multiple myeloma.
I urge you to write your questions down and take them with you to your doctor's appointment. Take someone with you because there's a lot of information to absorb. Ask all the questions and don't allow any of the medical professionals to make you feel rushed. It's important that you have a good understanding of this blood disorder which is not cancer but a precursor condition to multiple myeloma and sometimes other blood cancers. The rate of progression is very low typically so you want to get enough information so you know what to expect. The gains made in the treatment of multiple myeloma have been pretty phenomenal over the past decade. Even if your MGUS progresses, multiple myeloma is treatable.
Make sure you have a physician who listens to you and is willing to answer all your questions. Don't feel apprehensive about asking for a second opinion if you haven't found the right match yet.
I'm really glad you found the forum and I know that our members will help support you in your journey. We have members that have had MGUS for decades.I hope you will let me know how you are doing with all this and if you got the answers that you seek.
I'll be there all of next week
Thanks
Rochester? I've been on that campus years ago with my late husband. I've not been on the other campuses.