[Sister In Law]

Monoclonal protein band in husband's urine

by Sister In Law on Fri Sep 11, 2015 11:36 am

Hi, I had been on this forum a few years ago. My sister-in-law had multiple myeloma and accompanying amyloidosis. She had a very tough time – mainly her kidneys were in bad shape before her diagnosis, so that is what took her life. Her father had multiple myeloma many years ago and was only treated with prednisone and Alkeran (melphalan). The man is 86 years old now and has been in total remission for 20 years. Unheard of.

Now, my husband is ailing. He began having nerve pain in his legs, arms, and across his abdomen. He had incredible fatigue and a slight fever. That passed, but the weakness and nerve issues have lasted. He is having many tests, but in the urine test, a monoclonal protein band was seen in the beta region.

This is what the note said:

Monoclonal protein band in beta region. Urine electrophoresis shows albumin, transferrin and some unidentified proteins in the alpha and beta regions and some diffuse gamma globulin.

When I saw "monoclonal protein band," I nearly had a heart attack. I know about multiple myeloma. He is seeing a rheumatologist who thinks he has an autoimmune disease like lupus. I am hoping that his results do not point to multiple myeloma. The family is cursed with this disease. If nothing else, maybe it is only MGUS. He had a blood test for multiple myeloma three years ago and did not have this protein (electrophoresis). I cannot imagine that he could go from no MGUS to full blown multiple myeloma. I hope.

Can anyone help with this? I don't know what to think of the test result.

Thanks so much
L.

[Tracy J]

Re: Monoclonal protein band in husband's urine

by Tracy J on Fri Sep 11, 2015 12:18 pm

Sister in law,

I'm sorry to hear about what you and your husband are going through. Given his family history, I would certainly suggest that he pursue seeing a hem/onc doctor to get to the bottom of the monoclonal band. It's tricky territory, with lots of nuances. The stakes are high. So if I were in his shoes, I wouldn't let go of this until a satisfactory answer is obtained.

Sorry you need to be here. But at least you know you aren't alone!

Tracy

[Multibilly]

Re: Monoclonal protein band in husband's urine

by Multibilly on Fri Sep 11, 2015 1:44 pm

Sister in Law,

I think Tracy is of course right in that you ought to seek out a hem/onc under the circumstances. I wouldn't leave the follow-up testing to a rheumatologist given the family history and the UPEP results.

You said they are "running many tests". The next logical set of tests to help sort out if myeloma or MGUS is in play would be the serum protein electrophoresis (SPEP), serum immunofix­ation, quantified immunoglobulin, and serum free light chain assay tests. Perhaps one or more of those tests are already in the works?

[Sister In Law]

Re: Monoclonal protein band in husband's urine

by Sister In Law on Fri Sep 11, 2015 11:05 pm

Hi everyone,

Thanks for the reply. We first went to the rheumatologist because it appeared that he had some sort of disease / autoimmune thing. He has the symptoms of Sjogren's syndrome and even had the early symptoms of Guillain Barre after a weird salivary gland attack. The gland was not infected. It seemed like autoimmune. He had a slight fever, terrible fatigue, and then the neuropathy started. It's been a nightmare. Then, just for the heck of it, his GP ran the urine test because of the family history. I was horrified to see that in the test. The GP has not contacted us yet. He had also done a blood electrophoresis, which we have not seen the results.

Can MGUS hit a person in an attack, abruptly? He did not have MGUS three years ago when he had blood work (electrophoresis). It seems shocking that myeloma could hit that fast without going through the MGUS, smoldering, etc. I am dreading this something terrible having lived through the nightmare with his sister who had multiple myeloma and amyloidosis. Three years of hell.

I have read that some autoimmune diseases can cause a monoclonal protein band.

My husband's is in the beta region. Most people's are in the gamma region. He has other unidentifiable proteins, too.

Sort of scared. He has leg muscle pain and neuropathy. It hit him abruptly. He was fine one day and instantly ill the next day and it has been over two months now. Lots of doctors and no results. I hope it is something else, or at least only MGUS.

Thanks for writing. I'm particularly concerned about what I first mentioned, the monoclonal protein band, albumin, transferrin and the unidentified proteins in the alpha and beta regions (that has me wondering, too). And they mentioned diffuse gamma globulin. What does that mean?

Thanks!

[Multibilly]

Re: Monoclonal protein band in husband's urine

by Multibilly on Sat Sep 12, 2015 8:55 am

Sister in Law,

I realize that this is a very emotional time for you and your husband.

But why are you assuming that it could be full blown symptomatic myeloma and not MGUS at this point? And, yes, it could be something else altogether.

I'd really suggest trying not to jump to a lot of conclusions until you start to get a lot more lab test results in besides just a UPEP. You're just going to go crazy with worry coming up with different scenarios. I know this is really hard to do, and most of us on this forum still do it when we develop a new symptom or find something off in one of our labs.

The serum tests I mentioned earlier will help to zero on things. If the serum tests suggest a mono­clonal gammopathy, a doctor would likely then order a bone marrow biopsy and a PET / CT or whole-body MRI . But I would only do these follow up tests under the guidance of a myeloma specialist who knows which additional tests to order (iFISH, cytogenetics, etc) and how to best interpret the results.

Hope that helps a bit. Let us know what you find out next and wishing you well.

[Sister In Law]

Re: Monoclonal protein band in husband's urine

by Sister In Law on Sat Sep 12, 2015 11:20 am

Thank you for your reply. I hope it is MGUS or something else. Going through the mess with his sister's multiple myeloma and amyloidosis for three years was very hard on us and on her. She wasn't married, so we had to do a lot of caregiving and help. I went with her to the oncologists office and heard the ugly diagnosis with her, so it's hard to not worry a little about her brother. But again, it could be an autoimmune disorder, too. And the information about MGUS is encouraging, although he has the nerve issues that seem to come with that for some people. That's really getting him down.

It's true, he will need a lot more testing. I know he's freaked out about the protein band, too. All too fresh since his sister passed away in December.

I love this forum. I visited it often when she was ill. Some very kind people who give their time and energy to hurting people. How wonderful!

I will update as we know more.

[Sister In Law]

Re: Monoclonal protein band in husband's urine

by Sister In Law on Tue Sep 22, 2015 10:17 am

Hi Everyone,

My husband got the results of his electrophoresis test. I am not sure if this is blood or urine (or both), and it is not immunofixated. We have both urine and blood with the immunofixation coming. His values are listed below.

I really don't know what to think. I am hoping beyond hope that he does not have myeloma, or worse, like his sister, amyloidosis. I remember that, with the amyloidosis, she had low albumin and low protein. I don't know if that is also a marker of myeloma or even MGUS. I don't know why the various proteins are listed twice? Is that typical? Or maybe the test included his urine test and his blood test and they combined them?

All of this is somewhat new. My sister-in-law had multiple myeloma and amyloidosis. I didn't always pay that much attention to all the details of her disease.

Do these values look like what the rest of you see in your own protein electrophoresis tests?
I read about hypogammaglobulinemia last night. Sounds like a low B cell situation and being more prone to infection. I don't know if hypogammaglobulinemia is part of myeloma? It sounded like it was part of some autoimmune diseases, too. We still do not know what is wrong with him. Lightheaded, fatigue, neuropathy that started suddenly, nausea at times, con­sti­pa­tion, dry cough.

If someone replies, just be bare bones honest and don't worry about freaking me out. I am preparing for the worst and hoping for the best. We've been through the wringer already for many years ... prostate cancer, colon cancer, thyroid cancer (that was just him). I had thyroid cancer when I was 25. Thank God we did not have kids. They would have been doomed. His father has kappa myeloma that has been in remission for years. Alive 20 years later with an M-spike but no active disease. He was treated only with Alkeran [melphalan] and prednisone!! His sister died of kidney failure due to myeloma and amyloidosis last December. She was not married so we were her caregivers some of the time. So tiring. I am recovering from neck surgery and nerve pain for 3 years. It's been a very rough season for us, and now this!

These were the comments at the bottom of the electrophoresis test:

Hypogammaglobulinemia (? immune deficiency or suppression, renal or GI protein loss, plasma cell abnormality / dyscrasia, gammopathy, light chain disease). Hypoalbuminemia.

Component Results Value Std Range
ELP Total Protein 5.3 6.2-8.2
ELP Albumin 3.4 3.5-5.0
ELP Alpha A1 0.2 0.1-0.4
ELP Alpha A2 0.6 0.5-1.1
ELP Beta 1 0.4 0.4-0.8
ELP Beta 2 0.3 0.2-0.5
ELP Gamma 0.3 0.6-1.5

ELP Albumin% 63.3 45.0-80.0
ELP Alpha A1% 4.7 1.0-6.0
ELP Alpha A2 % 12.1 6.0-17.0
ELP Beta 1 % 8.3 5.0-13.0
ELP Beta 2 % 5.2 2.0-8.0
ELP Gamma % 6.3 7.5-24.0

[Sister In Law]

Re: Monoclonal protein band in husband's urine

by Sister In Law on Tue Sep 22, 2015 11:51 am

We just heard from the doctor that his urine shows a lambda light chain.

He has a lot of symptoms. Is it still possible for it to be MGUS? In June, he got lightheaded, very constipated, feverish, developed neuropathy in one day, terrible fatigue, muscle aches, dry mouth, etc. It seemed to hit him all at once after a trip to Colorado.

I am very concerned about this being Myeloma, rather than MGUS.

[Tracy J]

Re: Monoclonal protein band in husband's urine

by Tracy J on Tue Sep 22, 2015 5:22 pm

Sister in Law,

Boo, I am sorry to hear about the lambda light chains in your husband's urine sample. But based on what you just reported, you have not yet got a final diagnosis, right?

Bone marrow biopsy yet?

Also I just finished writing a post on another thread about amyloidosis, which I'm copying here:

The only way to test for amyloidosis is for biopsy samples to have the "Congo Red Stain" in the pathology laboratory. Congo Red Stain obviously means nothing to us, but to the pathologists, it's a certain technique. Amyloid fibrils can't really be seen with other common procedures that biopsy samples undergo. You'll have to check to see if this have ever been done to any of your samples.

The samples could be bone marrow, kidney, skin, abdominal subcutaneous tissue, even heart or lung. Typically it would be wherever there are symptoms or abnormal findings + bone marrow. However, none of these is 100% sensitive for amyloidosis, so if the suspicion is high enough, the doctor just has to keep going with the biopsies until satisfied, which is undefined. This is where the "art" of medicine comes in. The oncologist has to assimilate the risk of amyloid, the symptoms you are having, the physical exam findings, all the other labs, images and pathology reports to decide when to stop collecting tissue samples!

For example, when I was diagnosed in 2012, my bone marrow biopsy was negative for amyloidosis, but I was showing A LOT of kidney symptoms and my light chains were through the roof, so we proceeded to kidney biopsy, which was positive for amyloid.

FYI amyloid is known for causing neuropathy, as well as carpal tunnel syndrome, so your numbness and tingling does ring a bell for me. However, the list of other things that can also cause numbness and tingling is LONG.

This may raise more questions than it answers. It's complicated stuff.

[Sister In Law]

Re: Monoclonal protein band in husband's urine

by Sister In Law on Tue Sep 22, 2015 7:17 pm

Hi again,

Yes. The dreaded amyloidosis word. My sister passed away in December from multiple myeloma and amyloidosis. She had a stem cell transplant and had one heck of a time. I think they waited WAY too long to do it. She had a perfect remission, but her kidneys were gone. She could not tolerate the dialysis and passed away. She also did not take care of herself and ate a lot of fast food before and after her transplant. Lots of salt and bad stuff for ailing kidneys.

I really live in dread of amyloidosis. We endured three years with her because she was not married and needed us a lot. We were just recovering from the loss, selling her house, etc. Hoped to get on with life. His mother died six months before that and we had to do all of that before his sister!!

I hope and pray that it is only MGUS and not amy. Amyloidosis is supposed to be incredibly rare. She did have the Congo stain and they found the amyloidosis before the multiple myeloma.

Take good care of your kidneys. Don't do fast food for all your meals! Her rule was if it didn't taste salty, it was okay! But she loved her fast food. Not that it changed things, but it might have ruined her kidneys before their time!

Hoping and praying for MGUS. He has got to see the oncologist and we do not have an appointment yet. Hurry up and wait, wait wait wait.

I often wonder if there are not a lot of multiple myeloma people who have amyloidosis and do not know it because their doctors do not do the test. Most multiple myeloma people have never heard of it. It is only 10% to 15% of the multiple myeloma cases, but it is enough that everyone should be screened.

Thanks for the info and the time you took to write. Hope I did not upset you in anyway with my sister-in-law's passing. She found her multiple myeloma quite late in the disease, too. She had many symptoms but ignored them until her kidneys failed. Then they began hunting for the cause. Never dreamed she had it!!