Does anyone else have MGUS?

@pmm thanks Patty! I just had my labs done on January 21st, a week ago! My m spike was .2 g/dl down from .29 on Dec 29 which was when they found the first abnormality. My ratio is .7 and my kappa is 13.77, lambda 19.41. I had a call from the nurse today who told me to keep living my life and try to forget about it. I wish!!

Although I am now a multiple myeloma patient, and on treatment for that since 2021, reading the stories here makes me wonder. Officially I was diagnosed with MGUS in 2017, progressed to SMM in 2018, and to MM in 2019. But before all of that, back even to the late 1990s, my iron was low and labs were inconclusive. Doctors said it was due to my fibroid tumors, and I had a hysterectomy in January 1999. But truly, I have been wondering if it was MGUS all that time, as there was no testing done. My insurance was an employer sponsored HMO, notorious for not looking into special testing [that might cost more money!] I had no clue about MGUS and all.

That said, it is so important for us to be our own healthcare advocates. In these times of bountiful accurate information available to us, it is imperative we educate ourselves! Not be scared, and take into account our own best healthcare interest. Yes, even when that means being a "thorn in the side" of our medical team!

Just reflecting here today, and wondering how things might have been different years ago, for me....
Ginger

@pmm thanks Patty! I just had my labs done on January 21st, a week ago! My m spike was .2 g/dl down from .29 on Dec 29 which was when they found the first abnormality. My ratio is .7 and my kappa is 13.77, lambda 19.41. I had a call from the nurse today who told me to keep living my life and try to forget about it. I wish!!

@theadosi Thea, my last numbers were a bit higher than usual. I attribute that to surgery I had (hip replacement) on 4.1. We’ll see when I go back in March. I was diagnosed in August of 2021.
Ratio 4.53, m spike 0.02, kappa 80.7 mg/L, Lambda 17.8 last go around.
Those numbers aren’t far from what they were in 2021
No lesions or anything showing up on my scans that my physician is worried about.
I think it’s important to get bones scans annually from what I’ve read.
I often get my labs the same day as my doctors appointment. They crank results out pretty fast, but I insist on having early morning labs and then a late morning doctors appointment if I’m going to do that. Since I live only 25 miles away from my cancer center, I don’t mind going in a couple of days in advance to get the labs and that way I’m sure that the doctor will have them in his hand when I see him. Not only is that better for my anxiety, but I want to be able to ask my questions while I’m in the room. It’s so hard to get them on the phone otherwise. I write my questions down and I literally check them off as they are answered so he knows that he’s not leaving the room until I get all my questions answered. Poor guy. I was a medical social worker so I can be pretty assertive with doctors. The other thing that I think is important at least for me is to take someone with me to my appointment. So often I get so much information all at once and I have been known to forget what was said in the room. These initial appointments are so important because we’re just learning about the disease and of course we’re anxious. For me, I was anxious for the first two years and then I’d say I calmed down and didn’t feel like I was going to immediately get multiple myeloma. The other thing that helps me is that I found a doctor that works pretty well with me. He doesn’t sugarcoat anything, but he’s also not a hand ringer. And every darn time when I leave his office, he says “you’re doing fine and in the unlikely event that you get smoldering or multiple myeloma it is very treatable and we know so much more about it now than we did even a decade ago.”
That is really reassuring to me. I hope you let me know how you’re doing and if we can be helpful to you by providing some information from our own experience. We’re not doctors and anecdotal information is certainly limited by the perspective of the patient, but we also have some pretty good experience researching this blood disorder. Would you mind sharing how your journey is going?

@pmm thanks Patty! How long have you had MGUS and how low are your numbers? Just wondering at what point I should maybe push for a BMB? He said he wouldn’t have even done the skeletal scan. I have to go back to see him in 6 months with labs on the day of my visit. Not sure I understand that as wouldn’t they want the lab results back before my visit?

Although I am now a multiple myeloma patient, and on treatment for that since 2021, reading the stories here makes me wonder. Officially I was diagnosed with MGUS in 2017, progressed to SMM in 2018, and to MM in 2019. But before all of that, back even to the late 1990s, my iron was low and labs were inconclusive. Doctors said it was due to my fibroid tumors, and I had a hysterectomy in January 1999. But truly, I have been wondering if it was MGUS all that time, as there was no testing done. My insurance was an employer sponsored HMO, notorious for not looking into special testing [that might cost more money!] I had no clue about MGUS and all.

That said, it is so important for us to be our own healthcare advocates. In these times of bountiful accurate information available to us, it is imperative we educate ourselves! Not be scared, and take into account our own best healthcare interest. Yes, even when that means being a "thorn in the side" of our medical team!

Just reflecting here today, and wondering how things might have been different years ago, for me....
Ginger

@theadosi They don’t always do a BMB. My numbers are low so I have opted not to have one. I avoid as many of the invasive procedures as I can as none are without risk.
It’s always good to ask questions though. If the purpose is to establish a baseline, my question was “is it necessary since we have gamma, kappa, the k/g ratio and m spike and can see progression in those levels?”
Some hematologist/oncologist are reluctant to even diagnose MGUS without the bone marrow biopsy in the past, but there is data to suggest that the BMB is not always necessary. I would certainly get one if my physician compelled me.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5757684/
It sounds like your doctor is not working hard to compel you. What is has he or she said about it?

@roosa1005 hey there! My M spike was .2 G/DL. Is yours 1.1 G/L? Or 1.1 G/DL? I haven’t had a bone marrow biopsy yet but I just got diagnosed a week ago. I’m assuming they’re waiting to see what my numbers come back as in six months to see if they go up at which point perhaps they’ll order a bone marrow biopsy? I had an MRI of my back done recently as I have some lower back issues that are unrelated and they said that my bone marrow looked good. So I guess that’s good news. My free light chain ratio is .7, what about you? I agree, it is nice to have others who understand and can help ease the worry a little bit!

I was diagnosed in 2013. They found I had almost no iron stores when anyone marrow biopsy was done. I don't know that my stores are any better since then. I was not able to get iron transfusions (thanks insurance, though I head it is unpleasant) so I had to take these huge horse pills. But I couldn't take it the amount of months necessary due to it upsetting my stomach. I can't remember how far I got but I had like several bottles left after I stopped. I have never been able to get checked for my iron stores since then. I have been chronically tired for a while and lately it has been much worse so thinking maybe iron is really low. Hard to get it checked. The last time I was checked for MGUS was in 2019 and there was a little improvement. I told my doctor that I was finally ready to get checked again and he said they can do the tests and the one to check iron stores...I had labs done last week. Neither year was part of it. I messaged them in the portal and the nurse said they can use the CBC test and mine is fine. But you can have normal CBC results and have MGUS, it's not concerning generally. They didn't find anything weird originally that I recall .but it was 2013 so ..I just know it was a different test or tests. I will probably have to find a hematologist who specializes in MGUS and and iron.... so I already found some locally. Mayo Clinic would be a great option but don't want to drive that far.