1. < Blood Cancers & Disorders

Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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jeannie215 | @jeannie215 | Feb 21 11:03am
In reply to @loribmt "Hi Jeannie, from my personal experience with 13 bone marrow biopsies and nuclear medicine testing, I..." + (show)
@loribmt

Hi Jeannie, from my personal experience with 13 bone marrow biopsies and nuclear medicine testing, I would have had no problem returning to work the next day. You won’t want to be out in the school yard playing basketball for a day or so but most other activities return to normal. ☺️

The biopsy site will most likely be a little tender but shouldn’t be painful the next day. It feels more like a bruise. Depending on the biopsy site, you’ll lie on your side or your belly. The most common bone marrow biopsy site is the back of your hip bone (posterior iliac crest). Basically, near one of the large dimples above your butt.

This is done with an aspiration/biopsy needle so there’s no large, open surgical area. You’ll have a compression bandage on there for 24 hours… bandaid with a larger piece of gauze under for the compression. There shouldn’t be any residual bleeding; the compression is there just in case. After 24 hours you can shower.

Seeing that you’re having this done at a large clinic, did you opt for mild sedation for the biopsy?

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Hi. Thank you so much for all that information. I really appreciate it. Mild sedation was not offered to me. They said they were just localize the area.

Do you have MGUS as well? I’m really hoping that I can figure out what is causing my hip pain. The hip pain radiates to my knees and down my legs. More prevalent at night.

Thank you again!!
Jeannie

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Feb 21 3:01pm
In reply to @jeannie215 "Hi. Thank you so much for all that information. I really appreciate it. Mild sedation was..." + (show)
@jeannie215

Hi. Thank you so much for all that information. I really appreciate it. Mild sedation was not offered to me. They said they were just localize the area.

Do you have MGUS as well? I’m really hoping that I can figure out what is causing my hip pain. The hip pain radiates to my knees and down my legs. More prevalent at night.

Thank you again!!
Jeannie

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Hi Jeannie. You have a number of tests coming up so I do hope you find some answers for your hip pain and whether it’s related to your MGUS or not. As you’ve seen in the forum, quite a few MGUS patients have symptoms that doctor’s don’t feel are related but the correlation seems pretty coincidental. Many mysteries with blood diseases.

To answer your question, no, I didn’t have MGUS. My special treat was Acute Myeloid Leukemia…which comes with its own level of excitement. ☺️ I was dealing with that exactly 5 years ago right now, and so thankful it’s behind me. Lots of chemistry poured into me and a bone marrow transplant has brought me to a durable remission!

Let me know how your tests come out! It can take a week or so for the complete biopsy results to be reported.

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1 reply
jeannie215 | @jeannie215 | Feb 21 4:10pm
In reply to @loribmt "Hi Jeannie. You have a number of tests coming up so I do hope you find..." + (show)
@loribmt

Hi Jeannie. You have a number of tests coming up so I do hope you find some answers for your hip pain and whether it’s related to your MGUS or not. As you’ve seen in the forum, quite a few MGUS patients have symptoms that doctor’s don’t feel are related but the correlation seems pretty coincidental. Many mysteries with blood diseases.

To answer your question, no, I didn’t have MGUS. My special treat was Acute Myeloid Leukemia…which comes with its own level of excitement. ☺️ I was dealing with that exactly 5 years ago right now, and so thankful it’s behind me. Lots of chemistry poured into me and a bone marrow transplant has brought me to a durable remission!

Let me know how your tests come out! It can take a week or so for the complete biopsy results to be reported.

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Hi. Thank you so much for your reply. I wish you the best. So happy to hear that you’re in remission. I will keep you posted. I appreciate your feedback. 🙏🏻🙏🏻

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kakc19 | @kakc19 | Feb 22 6:07am
In reply to @jeannie215 "Hi everyone, This has been such a great platform for information and support. Thank you everyone...." + (show)
@jeannie215

Hi everyone,

This has been such a great platform for information and support. Thank you everyone. My received a diagnosis of MGUS on 1/2/24. I am scheduled for a bone marrow biopsy, blood labs and a pet scan with nuclear medicine on March 13th at Memorial Sloan Kettering in Manhattan. Any advice on what I should expect? I'm planning to go to work the next day... I work with young autistic children... any thoughts?

Thans,
Jeannie

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I had mine and had no pain, no issues afterwards.
Positive thoughts❤️
Kathy

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Allstaedt57 | @allstaedt57 | Feb 22 7:11am
In reply to @jeannie215 "Hi everyone, This has been such a great platform for information and support. Thank you everyone...." + (show)
@jeannie215

Hi everyone,

This has been such a great platform for information and support. Thank you everyone. My received a diagnosis of MGUS on 1/2/24. I am scheduled for a bone marrow biopsy, blood labs and a pet scan with nuclear medicine on March 13th at Memorial Sloan Kettering in Manhattan. Any advice on what I should expect? I'm planning to go to work the next day... I work with young autistic children... any thoughts?

Thans,
Jeannie

Jump to this post

Jeannie, I will be having my third BMB at Sloan on the 19th. My first was in my hometown of Asheville, NC. My Oncologist did it himself after providing me with 1 mg of Ativan IV push, 1 mg of Dilaudid IVP and topical Lidocaine. It was very comfortable, unlike my second one (first at MSK) which they only gave me a total of 1 mg of Ativan by mouth (PO) broken up in 0.5 mg followed a half hour later with another 0.5 mg and apparently some topical numbing factor. I'm sorry to say that was inadequate coverage. I found it to be very uncomfortable to the point of painful, but for a short duration. I have told my Provider that I do not want a Fellow/Resident doing my upcoming one - only a seasoned professional. I allowed a novice to practice on me the first time. Not again. Guess it depends on your tolerance for pain? I had no complications otherwise and no residual issues.

REPLY
2 replies
Mentor
Patty, Volunteer Mentor | @pmm | Feb 23 5:14am
In reply to @allstaedt57 "Jeannie, I will be having my third BMB at Sloan on the 19th. My first was..." + (show)
@allstaedt57

Jeannie, I will be having my third BMB at Sloan on the 19th. My first was in my hometown of Asheville, NC. My Oncologist did it himself after providing me with 1 mg of Ativan IV push, 1 mg of Dilaudid IVP and topical Lidocaine. It was very comfortable, unlike my second one (first at MSK) which they only gave me a total of 1 mg of Ativan by mouth (PO) broken up in 0.5 mg followed a half hour later with another 0.5 mg and apparently some topical numbing factor. I'm sorry to say that was inadequate coverage. I found it to be very uncomfortable to the point of painful, but for a short duration. I have told my Provider that I do not want a Fellow/Resident doing my upcoming one - only a seasoned professional. I allowed a novice to practice on me the first time. Not again. Guess it depends on your tolerance for pain? I had no complications otherwise and no residual issues.

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@allstaedt57 agree! I receive most of my care in a teaching hospital and although I have great respect for the experiential learning piece, I am clear about communicating what I will agree to let a resident take the lead on.
My MGUS care is in a cancer treatment facility so that’s not a problem.
You definitely want someone doing the BMB who does several a week rather than someone who has done one or two before.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Feb 23 12:27pm
In reply to @allstaedt57 "Jeannie, I will be having my third BMB at Sloan on the 19th. My first was..." + (show)
@allstaedt57

Jeannie, I will be having my third BMB at Sloan on the 19th. My first was in my hometown of Asheville, NC. My Oncologist did it himself after providing me with 1 mg of Ativan IV push, 1 mg of Dilaudid IVP and topical Lidocaine. It was very comfortable, unlike my second one (first at MSK) which they only gave me a total of 1 mg of Ativan by mouth (PO) broken up in 0.5 mg followed a half hour later with another 0.5 mg and apparently some topical numbing factor. I'm sorry to say that was inadequate coverage. I found it to be very uncomfortable to the point of painful, but for a short duration. I have told my Provider that I do not want a Fellow/Resident doing my upcoming one - only a seasoned professional. I allowed a novice to practice on me the first time. Not again. Guess it depends on your tolerance for pain? I had no complications otherwise and no residual issues.

Jump to this post

I have had 4 BMB. All were done by my oncologist at the time. The first one was very uncomfortable! Then I moved 800 miles, and have a new doctor. He has done 3 BMB on me, with no sedation, no ativan, nothing. He is just the tops in my book. No pain, no issue, no discomfort. In fact, I drove 2 hours home after each one! A lot has to do with technique, and general approach to patient care, in my opinion.
Ginger

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2121 | @leslie2121 | Mar 6 8:20pm

After my dr’s appointment I was surprised to see this on the SERUM SPEP report:
“ Possible M spike seen in gamma region.”
Then:
“SMALL PEAKS IN SEVERAL LANES WITH NO CLEAR MONOCLONAL PROTEIN IDENTIFIED.”

I have been diagnosed over 2 years ago with Biclonal MGUS. It has been over a year since my last labwork and dr appt so was worried what the status was.
As I mentioned in a previous post my labs were stable or improved:
No more proteinuria
Significant decrease in FLCs
Everything else back in normal range.
M spike 0.2 previously

I go back in 6 months to repeat everything and if still good I go to yearly. He even said my PCP could follow me but I plan to stay with him.

Doc said he doesn’t know what’s going on but that it’s not causing me any problems and not likely to.

Thoughts????
Could this be going away?

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1 reply
kayabbott | @kayabbott | Mar 7 7:33am

MGUS is a waiting game. I have IgA kappa light chain MGUS (8 years) and my M spike is at the detection limit. My kappa numbers have been creeping up over the years, but go up and down. I don't have any symptoms tied to MGUS, and get bloodwork every 6 months. If you have MGUS it doesn't go away, but the cancer risk is also 1% a year so low risk. Proteinuria is more tied to kidney issues so affected by diseases, meds, getting enough fluids.

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2121 | @leslie2121 | Mar 7 9:43am

I wonder if connected though? I don’t have anything medically going on that would cause kidney issues and was a new (brief) finding that I’m hoping is resolved. It wasn’t much, and the eGFR went from 61 to 73, which I’m feeling better about.

I’m 65 and don’t think it’s going to progress in my lifetime.

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