Bone marrow biopsy and/or blood tests for MGUS

Re: BMB, I’ve had IgM kappa MGUS for eight years and seen five hematologists in search of one I liked. Found him, love him!
Only one suggested a BMB, but not the one I kept. A physician friend had a BMB. He said it was painful and he wished he had had anesthesia. Good luck!

@raye Not all bone marrow biopsies are uncomfortable. My first one was, but the last three have been no issue. My current oncologist has done those three, with no ativan nor anesthesia, and no big pain issue afterwards. In fact, I drove 2 hours home after each one of them! Personally, I think it depends on the technique and the person doing it!
Ginger

I have had MGUS for 18 months with minimal symptoms. I had a BMB before Christmas with anesthesia. Needed a day in bed. Other that that, a sore butt for a week. Nothing that kept me down. I am glad I had it, though the results showed my MGUS progressing to marginal zone lymphoma. I am on a watch and wait program. Glad I had the procedure but would NOT no it without anesthesia. I live in LA and am a very active 75 year old. Good Luck

Hello all,
I was diagnosed with MGUS in June 2023 and I've got some questions for anyone willing to answer. I've been reading posts on here about people with MGUS having bone marrow biopsies done. Others that see their Hematologist every 3 months, some who see theirs every 6 months. Can I ask those that have had the biopsies done, what precipitated you into having the biopsy in the first place? Was it a progression of your MGUS? Was it at your request or your doctor's? When I was diagnosed, the doctor I had, who I did not like, told me I had nothing to worry about that my MGUS probably wasn't going to progress into anything further. This same doctor also told me that I would test negative for a Free Light Chain Test but he was going to run it anyway. I told him not to speak too quickly because I would show him otherwise. Which I did. I tested positive, but that didn't seem to faze him or change his diagnosis or outlook on me and my situation. It is time for me to go back for a follow up appointment and I've been granted a different doctor (undetermined at this time) to see. Can I also get opinions as to whether or not you guys think I should ask for a completely new work up by this new doctor so it is an unbiased diagnosis? Or?? I don't know what to do or ask for or expect....I need some good solid advice and help, no one around me has the answers as this isn't something they've dealt with. Thank you in advance for your help, knowledge and understanding with my many questions....I do sincerely appreciate any and all help and advice.

@newfiesgirl1 First, welcome to Mayo Clinic Connect. You will find differing experiences and opinions here from fellow patients. We seem to have a variety of medical professionals that we work with, and that comes along with a variety of the ways we are treated!

First question I have, is if the doctor you have seen is a general practitioner, or a hematologist oncologist with experience in MGUS? That, to me, makes a difference. I was first seen by an oncologist with some hematology experience. Unfortunately, she did not have the background I needed for a comprehensive care of my case. On the fortunate side, it was at the time of a move 800 miles away, and I am now with a Mayo Clinic trained doctor, who specializes on blood cancers.

Seeing a new doctor, let's primarily make sure you are in agreement with your treatment plan and his/her outlook for your care. The test is the same test. Make sure you have a list of questions to propose; you have already put them in this latest post! Ask this new dr if a repeat of any test is warranted, or if any new ones should be ordered. A three month follow-up is not uncommon. A bone marrow biopsy is not uncommon, to establish a baseline, and may be repeated as symptoms or tests might indicate. Yes, MGUS can remain stable for a long time, but consistent monitoring is important.

Healthful eating, moderate exercise, reducing stress, and following suggestions by your medical team are all good guidelines. And if you have any other health issues/concerns, staying on top of them is always beneficial. In my own experience, my medical team has appreciated that I want to have an active role in my own health. When there is information to be had, I want to read about it!

The International Myeloma Foundation http://www.myeloma.org has a lot of great resources to check out! And we are here for you to ask questions. It makes the journey easier to know we are not alone, doesn't it?
Ginger

I agree with Ginger, I was diagnosed with MGUS IN 2022 when trying to discover why I was anemic. Hematologist/Oncologist is following the “watch and wait” protocols. Very frustrating for someone who like to get things done and would love a more proactive approach! In 2023 had the bone biopsy and now I’ve been “upgraded” to smoldering myeloma. Just a little further along the spectrum toward full Multiple Myeloma! But still just testing every three months and watching! Investing whole plant bad diets as there seems to be some help there. But big life style change if I go that direction.
Follow Ginger’s suggestions and find a good Oncologist with experience and educate yourself, You have to be your own best advocate!

Hi Ginger,
Thank you so much for responding and for your questions and comments. I'm going to answer in order asked. The doctor I seen was a Hematologist, but I don't believe his area of focus was MGUS. He was all about statistics when he spoke to me. It drove me absolutely bonkers listening to him, because no two people are alike...but according to him, based on the statistics he was referring to about MGUS, I had nothing too worry about. He wouldn't listen to me afterwards, out of clinic, when I had questions regarding some test results that came back questionable. When I brought it to his attention he "reran" one of the tests I was questioning, which changed a couple of the other lab results in that area, which made ZERO sense to me. But it didn't change his diagnosis. It really just made me question his ability to diagnose me at all and that's when I asked to be seen again by a different Hematologist and was granted that opportunity and will be making that appointment soon. This doctor didn't want to let me show him any test results from other facilities from prior years that could possibly lead to a different outcome. He said and I quote " I think we have all the test results we need right now". He is extremely condescending when talking to me and makes a person feel silly and or stupid for asking the questions they are asking when they shouldn't be feeling that way. No question is silly or stupid. I don't care how many times I ask the same question, it deserves to be answered!! Lol. I really wish I could name him to see if anyone else had this feeling about him as a doctor but I don't want this to turn out to be a witch hunt. That's not my intention. I'm just really very grateful that they have given me another chance to be seen by another doctor who hopefully won't be anything like the first one.
Ok so you talked about a bone marrow biopsy being a common thing to do to establish a baseline right? I am in total agreement with you Ginger. I agree that some type of baseline needs to be established so that the progression or hopefully lack there of can be monitored. But then WHY WOULDN'T HE DO IT? That makes me SO angry!! I asked for different tests to be done, labs repeated and he refused to do them saying again, that we had all we needed. I left that appointment feeling empty as hell. Like I was NO closer to finding out what was wrong with me than I was when I first started. Which made me incredibly sad, angry, depressed, more stressed than I needed to be and which isn't good for me as I've got other health issues to be concerned with. I should also mention that besides MGUS I also have Lupus ('05), Fibromyalgia ('07), Lyme's('16), severe edema, interstitial lung disease, to name a few. There's more issues than that but those are the main ones I have that I deal with on an every day basis. After I came home from my appointment last year after being diagnosed with MGUS, I developed an even more severe case of edema in my right leg than I've previously had in years before. I had an ultrasound done on both legs and the findings were that it was highly possible that it was venous insufficiency. That doctor I seen that diagnosed me with MGUS didn't tell me what to look out for with respect to signs or symptoms of anything that would indicate a progression of the MGUS. So I have NO idea what to expect, look for, etc. I am COMPLETELY lost. Does it show?? I feel like I don't know if I m coming or going half the time and I hate feeling like this!! Half the time I don't feel like I'm making any sense when I talk about it to others or I feel like I'm just repeating myself. I just don't know what to do or how to ask for the help I want or if I have he right to ask for what I want. That doctor really did a number on me!! Shame on him!!

@newfiesgirl1 Sending you a big hug!

There is a difference having a hematologist, and a hematologist oncologist. Aim for the latter. There are simply so many nuances of medicine we, as patients, can't expect our team to be up-to-speed on all aspects, but we can advocate to get the best qualified for our situation. I am truly sorry you experienced a less-than-stellar interaction with this first guy. But please don't let it reflect on how things go in the future!

I was diagnosed with Systemic Lupus in 1988, and also diagnosed with fibromyalgia, so we share some things in common! My suggestion is to educate yourself from reputable sources like Mayo Clinic, Cleveland Clinic, myeloma.org. Keep your entire medical team informed about your conditions/situation. The edema could be related to one of your conditions, but I am not a medical doctor. If you can increase your activity, and/or wear compression stockings, that could help.
Ginger

Gweiman, Thanks for your advice and input. I very much appreciate it. As I mentioned before when I asked for other labs to be ran, I got shot down by the first doctor. I asked for a more definitive test to be done because I "felt" something wasn't right with my diagnosis. Trust me when I say i didn't want to be sicker than I was diagnosed to be, but I felt that the diagnosis wasn't right. That I actually was sicker than diagnosed and I was further along but my pleas fell on totally deaf ears. I learned a long time ago that I have to be my own advocate for my health because no one else is going to be. I DON'T wanna be right about this either. I had something similar happen to me back in 2004 when I was so sick by didn't know why. Was sent to many doctor's who sent me to others who sent me to others. They all looked at me like I was making it up and or I was a hypochondriac. I FINALLY stumbled across one special Immunologist, who to this day I credit with saving my life to tell me it wasn't all in my head that I was sick. All it took was a doctor that wanted to find the truth and wasn't going to give up until he found it. That's when I was diagnosed with an autoimmune disease. He didn't label me Lupus until 2005 because he was unsure if it was Lupus or MS. I presented more for Lupus so in June of 2005 I got my label. Again, please don't misunderstand me, I don't want to be more sick than I am. The diagnosis just feels "off", if that makes sense. But how do I get the doctors to listen to me without sounding like a complete whack job? Lol...

Hey Ginger, I do wear compression stockings and they do help somewhat. But the edema is still so evident in my right leg especially. Here's got to be a connection back to a blood clot I had in the right leg back in 2010 that traveled up to my lungs and almost made it to my heart before it was discovered. The cause for the blood clot or reason was never found or known to this day. Some of the tests that he hospital ran while I was there were just some of the labs and tests I wanted the doctor to take a look at and consider in his diagnosis or thought process because they were significant with respect to myeloma back then, but he said he had all they needed! To be honest I wanted to scream at him!! But I knew that would get me nowhere