Does anyone else have MGUS?

Woops! Sorry Ginger. I guess I had Lori on my mind. 😉

Lori, oh I know it is inevitable unless something else snatches me from this earth and I am all for it if things change. I’m not one to embrace complacency. My doc is in full agreement and if he wants one I’ll agree.

@pmm Patty, your words are without a doubt, calming for many to read. @steffiney and @milo3986 please know you are not alone in any health journey. Mayo clinic connect is a very powerful platform to get support and information from! We each have our individual situations, and hearing what others experience helps us make informed decisions on our own.

When I was diagnosed with MGUS, it was a surprise. Like so many, it came from tests that showed anomalies, not ones specific for MGUS. Being an overachiever all my life, i rapidly progressed from MGUS to smoldering myeloma to multiple myeloma, but I am happy to say few of us do that. The watch and wait idea can be difficult to understand, and make us impatient, right?! But it is tried and true, and really, who wants to be on treatment before we really need to? Having a clear picture of us as a patient, we need to trust our doctors when they suggest a bone marrow biopsy to help get that definitive picture. Not everyone needs one, but most probably may at some point. I have had four now, and value the insight they brought to my complicated case.
Ginger

Hello new members @steffiney and @milo3986
Lori is very experienced and has a depth of information about bone biopsies for sure. I thought I’d throw in my thoughts about it for your consideration as I have taken a divergent path.
I have not had a bone biopsy. I was diagnosed…gosh my doctor told me last week it was almost 3 years ago. I hadn’t realized. Anyway, I have opted not to have a bone biopsy yet. I went in for blood tests every three months and my numbers have been relatively stable. They increase a little here…decrease a little there, but overall, they have been very stable. So stable, in fact, that my hem/onc doc has decided that I can have a six-month period this time between bloodwork.
The question that I asked my doc was… With numbers at this level, at what point would you start actually treating my disease as smoldering multiple myeloma or multiple myeloma? He told me that he would watch my bloodwork results and make a determination based on that, and at my current levels, he would not treat me any differently. It would be watch and wait regardless whether I was diagnosed with MGUS or smoldering multiple myeloma.
I know that at some point my MGUS can progress but I choose to wait on the bone biopsy until there is evidence of progression.
I am not afraid of the pain. I would certainly insist on sedation. I just don’t want to have it done for the benefit of a definitive diagnosis. I am asymptomatic and was diagnosed quite accidentally, just as most of us are. I have learned to live with the MGUS diagnosis with very little anxiety. I’m 71 years old and feel good, am happy and have an excellent life. I focus on blessings (in the secular sense) and not the what ifs.
At any rate, it is good to ask lots of questions and explore all your options. If your disease progresses or if you are symptomatic, then they will need to dig deeper. You can decide now to go ahead and do it or you can get a bone biopsy if your numbers get wanky.
Make sure you have found a physician you trust and who patiently answers all your questions.
Best,
Patty

Hi @milo3986 I was just discussing the bone marrow biopsy for MGUS with @steffiney who was also recently diagnosed with MGUS.

I know all of this just scares the socks right off a person…talk of potential blood cancers, bone marrow biopsies, treatments, etc.. I had a very aggressive form of leukemia 4 years ago and now in a durable remission and feel like nothing ever happened. Basically, ‘the worst’ happened and I’m alive, healthy and here to try to help others from living in fear ‘of the worst case scenario”. 🙃

Your MGUS may not progress or require treatment for many years as your doctor mentioned. So it would be awful living in fear for 10 years with ‘What if this happens?”. I know it all sounds frightening and you feel like you’re waiting for the other shoe to drop. But my attitude is that knowledge is power and this biopsy will give your doctor the facts they need to diagnose. You in turn get the facts you need to face whatever is necessary head on! I think we are our worst enemies most times with the stories we can tell ourselves of the worst case scenarios and most never materialized.

I’m going to reiterate for you part of the message I wrote to @steffiney regarding bone marrow biopsy for MGUS.
A bone marrow biopsy is a valuable tool for your hematologist to get a good look at the blood manufacturing center for your body.
The biopsy and examination of a core sample from the marrow and aspiration of peripheral blood can show whether your bone marrow is healthy and making normal amounts of blood cells. Doctors use these procedures to diagnose and monitor blood and marrow diseases.
Your doctor is trying to get the answers he needs to make a firm diagnosis for you. It can take a week or more to get a full report on all the in-depth testing of the samples.

I know you’re obsessing over this so I’d really encourage you to schedule the biopsy. Ask for sedation if you’re feeling anxious. It’s a lovely lala-land sedative so you have no knowledge of what’s going on…painless. ☺️

What do you think?? Isn’t it better to just get it over with?

Hi steffiney, I am a 56 year old white female myeloma patient, so not the most common demographic, which is male, black, and most importantly around 70 years old-and probably with some organ damage due to age and disease by then. I am young enough and in good enough health not to have kidney damage- and I was not shedding much calcium into my blood yet, as my bones were under attack, but are not such old bones. So your doctor may not have first thought of myeloma, as I gather you are around my age.

I almost didn't reply because I can't be sure to be a faithful correspondent, and you are on a very emotional journey through diagnosis -and then treatment!- right now- and you may write a question or express a feeling, and not hear back: I don't want to promise a dialogue, as I am on my own medical path, and the better I feel, the less likely I'll be on my phone reading and writing on Connect, to be honest: there are a lot of things I need to get done while I'm feeling healthy! So please don't be hurt if I leave you hanging in the future, as it is highly likely, if I have the energy to work and see my new grandchild etc..
That said, I had to write, to say, please get that bone marrow biopsy asap: I too had weakness and tingling in one leg, that came and went. There were a few days where I was literally dragging it up the stairs with me. Then it would seem better. Also, when I had an MRI and then PETscan three months later, it showed a brain lesion- as well as multiple lesions, small still, in spine and ribs. This is what myeloma does. It can affect the nerves a lot. It needs to be treated and stopped in its tracks. So the sooner it is diagnosed, the better the prognosis. And the bone marrow biopsy for me showed that I had very developed myeloma. The only other sign of it, other than rib pain, was in my Mprotein, which was unignorably significant- and moderate anemia which was rapidly worsening with no explanation.

The biopsy allowed the doctor to determine that I needed treatment for myeloma to begin immediately, and I went to a myeloma specialist then.( If you Do end up having MM, that is the best and most important thing you can do to fight it: see a specialist, who will be up to date on treatments, which are evolving rapidly these days, and can actually offer some patients a much better prognosis than one sees on the web, as those statistics are not up to date, being taken from studies that don't include the last five years of research, often - so don't get overly frightened. Though it is a serious beast, and a battle lies ahead).
It's been ten months of treatment thus far, and I feel better than I have for maybe the past two years. I had an autologous stem cell transplant two months ago. My numbers are looking good now, and I have hope of a few years remission. Meanwhile, new myeloma treatments are being studied and approved. It is a truly new era for MM, which is heading towards having a "functional cure" in the next decade, if doctor scientists keep up this extraordinary pace of research.

I hope you Don't have this rather unlikely disease, but if you do, the sooner you know, the better. So get that biopsy done!

I wish you the best of luck with whatever is coming next. Take it one step at a time, and try not to get overwhelmed. Whatever is up with your health, it can only be dealt with gradually, and with care. Value yourself enough to do that, and choose your caretaker doctor as carefully as you can: then relax and follow their lead, while knowing that you will have unique responses and side effects, that only you can note. If you don't communicate, they can't adjust. And there are options for treatment, to some extent. So be brave, and ask for what you need.

Good luck on your journey!

Wow! I didnt know you could have any sort of sedation so that makes me feel better. You are a warrior! Do you have MGUS, is that why so many biopsies?
I had an MRI for the MS after having weakness and tingling in one leg. My MS doctor said that the weakness and tingling is not due to the MS though which is puzzling. I did not have the lumbar puncture. He said based on the lesions in my brain, he was 99% confident I had MS. The vitamin D definitely helped with symptoms but I still have the weakness/tingling every once in awhile.

Lori, thanks for your response.
I am trying to stay positive. I heard from Dr today and we will be setting up appt for biopsy. I have symptoms that at 78 could be lots of things other than MGUS symptoms. I’ll know for sure.
So appreciate your words.

Hi @milo3986 I was just discussing the bone marrow biopsy for MGUS with @steffiney who was also recently diagnosed with MGUS.

I know all of this just scares the socks right off a person…talk of potential blood cancers, bone marrow biopsies, treatments, etc.. I had a very aggressive form of leukemia 4 years ago and now in a durable remission and feel like nothing ever happened. Basically, ‘the worst’ happened and I’m alive, healthy and here to try to help others from living in fear ‘of the worst case scenario”. 🙃

Your MGUS may not progress or require treatment for many years as your doctor mentioned. So it would be awful living in fear for 10 years with ‘What if this happens?”. I know it all sounds frightening and you feel like you’re waiting for the other shoe to drop. But my attitude is that knowledge is power and this biopsy will give your doctor the facts they need to diagnose. You in turn get the facts you need to face whatever is necessary head on! I think we are our worst enemies most times with the stories we can tell ourselves of the worst case scenarios and most never materialized.

I’m going to reiterate for you part of the message I wrote to @steffiney regarding bone marrow biopsy for MGUS.
A bone marrow biopsy is a valuable tool for your hematologist to get a good look at the blood manufacturing center for your body.
The biopsy and examination of a core sample from the marrow and aspiration of peripheral blood can show whether your bone marrow is healthy and making normal amounts of blood cells. Doctors use these procedures to diagnose and monitor blood and marrow diseases.
Your doctor is trying to get the answers he needs to make a firm diagnosis for you. It can take a week or more to get a full report on all the in-depth testing of the samples.

I know you’re obsessing over this so I’d really encourage you to schedule the biopsy. Ask for sedation if you’re feeling anxious. It’s a lovely lala-land sedative so you have no knowledge of what’s going on…painless. ☺️

What do you think?? Isn’t it better to just get it over with?