[Toni]

Have MGUS - questions re: IgM level & bone marrow biopsy

by Toni on Sun Jul 13, 2014 11:47 pm

Hello all,

I was just diagnosed with MGUS 3 months ago after tests for neuropathy and back / joint / leg / foot pain.

Background - MGUS IgG 1.1 g/dL, seems stable in 3 months.
Immunoglobulin M, 35 mg/dl (slightly low?)
Immunoglobulin A is normal
Immunoglobulin G is around 1600.
Bone scan indicates osteopenia

My doctor does not feel I have any reason for concerns but I have a lot of questions and I would be truly grateful for some input:

First: We did not do a bone marrow biopsy. My doctor does not require it and, frankly, I am anxious about the pain. However, perhaps I should reconsider if for nothing else than to have a referable baseline and to set my mind at ease? Any thoughts?

Second: I will ask him about the IgM being low. There seems to be very little data to suggest there is an issue except in cases of multiple myeloma patients and since I am not one, it begs the question.

So those are really my two questions. Most of my other test results are normal or very close to normal. Bone scan shows no lesions.

I do have degenerative disk disease primarily in cervical and lumbar/sacral areas. Nerve root impingement of on both sides of lumbar which is being attributed as the cause of my neuropathy/pain. I get frequent sinus infections and middle ear fungal infections. Oh, I also have fibromyalgia. I've been hypothyroid for years.

Thank you in advance! This is a great forum

[Multibilly]

Re: Have MGUS - questions re: IgM level & bone marrow biopsy

by Multibilly on Mon Jul 14, 2014 8:59 am

Toni,

Good to see you post here.

1. If you haven't had all the laboratory tests done that are outlined here, I would strongly encourage you to do so:

http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf

2. I would also strongly recommend getting over the fear of a bone marrow biopsy. It's just not that big of a deal for most folks and the data you will get from that procedure is invaluable. You really can't definitively say you have MGUS without a BMB. Also, if you have a low IgM, the BMB can help reveal the nature of the low IgM.

3. You will hear this advice a million times on this forum, but do seek out a specialist in multiple myeloma, not just a hematologist or oncologist that may have some familiarity with multiple myeloma.

Best of luck to you.

[Toni]

Re: Have MGUS - questions re: IgM level & bone marrow biopsy

by Toni on Mon Jul 14, 2014 9:13 am

Multibilly - Thank you SO much for responding. On the one hand there's the voice that says, there's a bunch of people out there who are MGUS, don't worry about it. And the other voice says, stay informed and stay on top of it. So your encouragement is priceless really.

I don't think they've done the "Freelite" test on me and I can't seem to find any test results for the ...ugh, what's it called? Kappa/Lambda light chain. Ok, the urine test says my ratio is low but that's with the urine test. Is that accurate? Or should I ask for a blood test.

I used to think I was smart! This material can really make you humble

[Multibilly]

Re: Have MGUS - questions re: IgM level & bone marrow biopsy

by Multibilly on Mon Jul 14, 2014 9:29 am

Did you do a 24-hour urine test or just a spot urine check? I suppose you could use a 24-hour urine test in lieu of a serum Freelite test. But all these tests don't really cost that much if you have insurance.

[Toni]

Re: Have MGUS - questions re: IgM level & bone marrow biopsy

by Toni on Mon Jul 14, 2014 9:37 am

24 hour urine test. So that test may be valid? When checking for the K/L ratio all I can find on the internet is the serum test.

From what I've read so far, the concern with MGUS is if you have a M-spike of 1.5 or higher, any lesions as shown on scan, and there's a third one I can't remember right now. Since I didn't have these three, my oncologist didn't feel the need to do the bone biopsy. In his defense, it sounds like the BMB is sometimes a question mark among oncologists when other test results are low.

But from what I've read, if you have a low or high kappa/lambda ratio, that can be something of a risk factor too.

Thoughts?

[Multibilly]

Re: Have MGUS - questions re: IgM level & bone marrow biopsy

by Multibilly on Mon Jul 14, 2014 10:58 am

The 24 hour UPEP won't give you a K/L ratio, as it doesn't measure the individual kappa and lambda free light chains value, but rather their total.

It's really your call on getting the other tests. If you and your doc are comfortable with what you have, then I don't know what to say. For me, I would ask to have the other tests done ... and I would be working with a multiple myeloma specialist. I personally like having all the unknowns checked off so that I clearly know exactly what I'm dealing with.

But, you need to do what you're comfortable with.

[Dianem]

Re: Have MGUS - questions re: IgM level & bone marrow biopsy

by Dianem on Mon Jul 14, 2014 11:56 am

Hi Toni,

I agree with Multibilly that a bone marrow aspiration (BMA) provides good info related to your MGUS.

My first M spike (1) was found on a routine blood test from my endocrinologist in the fall of 2011. Like you, I also have hypothyroidism, IgG MGUS, low IgM, and immunoglobulin G around 1620. Visited an oncologist and she ordered 24 hr urine, total body scans, and another blood test. When the new blood test came back, my spike was 1.5 g/dL, which indicated a BMA. My doctor feels a BMA is appropriate when a spike goes over 1.0 g/dL.

The levels have stayed about the same and currently my spike is 0.9 g/dL. Since diagnosed with MGUS almost 3 years ago, I haven't had any symptoms / illness, and I exercise daily. I use the same lab every time for my annual blood test.

Yes, so many doctors feel MGUS is just a condition to be monitored, but I feel having a baseline BMA (even though I hated it) and seeing an oncologist once a year is good.

Good luck, Diane

[Toni]

Re: Have MGUS - questions re: IgM level & bone marrow biopsy

by Toni on Mon Jul 14, 2014 1:02 pm

Thank you both for your responses. It helps so much! The "what if's" are the most difficult part of this whole equation. I keep going back to, "how will I know if I'm symptomatic since I already have a lot of pain and neuropathy?"

Multibilly - I'm pretty sure I'm going to push having a BMB done. I think your encouragement to have all tests done is helping me to lean in that direction and I do very much appreciate your input. I can see now after reading many of the posts on this forum that you are very knowledgeable and very in tune with what others have gone through as well, so your experience is quite valuable to me in determining what path to follow.

Diane - It sounds like just having the BMB was reassuring to you. I didn't know the M-spike could go down that much. 3 months ago mine was 1.1, two weeks later it was 0.9, and now it is 1.0. Seems like there can be some fluctuation, no?

I just met with my oncologist again this morning and asked about the BMB. He does not regularly do BMBs unless the M-spike is 1.5 or above. He was not concerned about the lower IgM either.

So I'm beginning to think I should pursue a multiple myeloma oncologist if I can find someone close who accepts my insurance. I saw that earlier post from a woman who had MGUS for years and suddenly they discovered she has lesions everywhere. That's a wake up call that we should all be vigilant, yes?

On a personal note, I have a friend the same age as me who was diagnosed (incidentally, of course) with multiple myeloma 4 or 5 years ago. She lost the fight fairly quickly, but she was an incredibly brave soul. I look at my still young children and think, I have to stay healthy for a long time...I'm sure we all think these things.

[Dianem]

Re: Have MGUS - questions re: IgM level & bone marrow biopsy

by Dianem on Mon Jul 14, 2014 2:14 pm

Hi Toni,

Yes, I too questioned how the spike was initially 1.0, then 1.5, then 1.0 (twice) and now 0.9. Also, the immunoglobulin (IgG) stayed between 1620-1630. Kept thinking that, if the spike goes up, so should the IgG immunoglobulin, but my oncologist said IgG spikes can fluctuate and perhaps the second test captured a more concentrated sample.

If I hadn't had the second blood test, I never would have had the BMA. Yes, it was painful, but the results were somewhat reassuring. I have a trisomic 7 anomaly. The Mayo Clinic here in AZ did the initial assessment and feels I'm at a low risk of progression and suggested monitoring with a local oncology practice.

But, when I asked the local oncologist about progression, he said trisomics typically transition around the 7th year following a MGUS diagnosis. I'm hoping the Mayo Clinic is right.

Take care and keep asking questions, Diane

[Toni]

Re: Have MGUS - questions re: IgM level & bone marrow biopsy

by Toni on Mon Jul 14, 2014 3:23 pm

Diane -

Ok, I think I understand a little better about what the results of the bone marrow test can reveal. I think I was under the impression you just found out how invasive the cells were. I didn't quite understand that you could find out genetics to that degree. I'm oh so uninformed yet. So it sounds like it could potentially be quite revealing into causes and prognosis? (As I say, potentially.)

I do so hope for you that the Mayo Clinic is right and I suspect they probably are. I read someone's post on these boards, something like, "stay two steps ahead, but don't go all the way into the future". I'm paraphrasing, but the point was to stay on top of things, be aware, but don't project yourself sick, if that makes sense.

This is an odd situation to be in, isn't it? To be vigilant and aware without succumbing to needless worry. Hmmmm, sounds like another opportunity for spiritual growth! ... I sure have been praying a lot. Mostly for clarity, but it also makes me think of all those on these boards and otherwise who do have multiple myeloma.