[Helen L]

MGUS just "body reacting to something"?

by Helen L on Sat Oct 08, 2016 6:05 pm

Hi all,

My IgG lambda M-spike was discovered back in 2013 after blood work for breathing pain (perhaps pleurisy - no obvious cause found) and joint pain with redness and swelling. I have attached a graph of my M-spike over time below. My M-spike is shown in blue, total IgG shown in orange, and "healthy" IgG (Total IgG minus M-spike) shown in grey.

Note that the units I use in the graph are g/L. An M-spike of 10 g/L is the same as an M-spike of 1 g/dL.

Since my M-spike was first discovered, it has remained relatively stable, varying from a low of 7.3 g/L to a high of 11.1 g/L (0.73 g/dL to 1.11 g/dL).

I visited my rheumatologist recently and she said this M-spike is just "my body reacting to something". My appointment was at 1 pm and she had already seen 4 patients that same day who have M-spikes. I have, however, been sent to a hematologist who is monitoring me every 6 months (no bone marrow biopsy).

My Beta 2 Globulins are always decreased (due to low C3), and my WBC, Lymphocytes, and Platelet Count are almost always below the normal range. All other blood work is normal.

Has anyone else had a doctor say not to be concerned because this is just your body reacting to something?

MSpike201610.png (32.46 KiB) Viewed 2110 times

[Wobbles]

Re: MGUS just "body reacting to something"?

by Wobbles on Sun Oct 09, 2016 12:14 pm

When I was first informed that I had MGUS, I was told that it was significant because I had it in the context of other abnormal blood readings (clonal lymphocyte proliferations, anemia and neutro­penia). From the start I viewed my MGUS as being just one element in the complex mosaic that describes my blood system.

From your description of your situation, I see that you also have more than one abnormality in your blood system. Perhaps, as your rheumatologist speculates, your body might just be “reacting to something”. Did the rheumatologist think this would also explain your other abnormal readings?

I had the same thought about my body “reacting to something” when my blood disorders first started. However, my hematologist thought it was much more likely that I had a serious problem in my bone marrow. (That may not be your situation.) A bone marrow biopsy showed that my hema­tol­ogist was correct.

Alas, in my case, my MGUS switched over to active myeloma. But it took ten years before that happened.

I was glad to see that you are seeing a hematologist and will be getting regular blood work. That's the key to understanding how your MGUS fares. And good for you for graphing your test results. I do the same. It is much easier to see the patterns.

Joe

[Multibilly]

Re: MGUS just "body reacting to something"?

by Multibilly on Sun Oct 09, 2016 2:19 pm

Hi Helen,

All your numbers and graphs strike me as being quite stable, especially when you consider that SPEP test results will naturally have a bit of lab measurement error from test-to-test and will also naturally vary a bit from test to test. Saying that your M-spike is varying because your "body is reacting to something" is a very broad explanation of why one's M-spike may vary from test to test.

By the way, if you are creating these graphs on Excel, you can easily include vertical "error bands" with a standard deviation of 1.0 like I do with my graphs in this post. The error bars can help you quickly spot if any of your numbers are starting to meaningfully deviate using a statistical perspective.

[Helen L]

Re: MGUS just "body reacting to something"?

by Helen L on Sun Oct 09, 2016 6:58 pm

Thanks so much, Joe and Multibilly, on your helpful replies. I'm sorry to hear, Joe, that your MGUS moved into myeloma after 10 years. Thank, Multibilly, for the graphing advice. I thought I was doing well just being able to produce a graph

When my rheumatologist says that my body is just reacting to something, I think she is referring to an immune system response. It is interesting that many of her patients (who have autoimmune system disorders) also have a monoclonal protein. I have noticed (from various studies) that patients with immune diseases do have a higher likelihood of an M Spike. One of the Beacon's polls also showed that almost 50% of people with MGUS, smoldering myeloma, and multiple myeloma were diagnosed with hypothyroidism (which is an immune system disorder). I often wonder if all of us who are regular visitors to the Beacon filled out some long questionnaire, it would benefit patients in the future; maybe some common link could be found and no MGUS has to progress to myeloma. Perhaps the chronic battle of the immune response causes the progression. I guess I'm still hung up with the idea of finding the "cause".

If my body is "reacting to something", I wish I could figure out what it is and treat it. Perhaps the M-spike would then drop or even disappear.

[Wobbles]

Re: MGUS just "body reacting to something"?

by Wobbles on Mon Oct 10, 2016 11:00 am

Hi Helen,

Thanks for that info on hypothyroidism and its possible relationship to MGUS. You can count me as one of the many who have had thyroid problems.

In my case I had hyperthyroidism prior to being diagnosed with MGUS. My hyperthyroidism was linked to an autoimmune disease (Graves Disease). That was also the time I became neutropenic and my red blood cell counts began to sink. I also developed a serious balance issue, ear tinnitus and extreme vertigo attacks. I still have balance issues. That’s why I am using the posting moniker Wobbles as it so aptly describes my gait.

In my case I think my immune system “reacted” to some sort of virus or bacterium and it got way out of balance. I often had swollen joints, unexplained rashes and gads of fatigue. This went on for years. Unfortunately for me, my immune system never righted itself. Instead, I ended up with clonal proliferations in both my T and B lymphocyte cell lines.

When I was told that I also had MGUS, I tried to figure out what the heck were plasma cells as I had never heard of them before. That’s when I learned that plasma cells start their life as B lymphocytes before being differentiated into immunoglobulin producing cells. The whole process is quite complicated and not fully understood even by the experts.

I hope there comes the day when MGUS can be treated and thereby lead to fewer cases of myeloma. That would really be a step forward.

Good luck with your effort.

Joe

[kshornb]

Re: MGUS just "body reacting to something"?

by kshornb on Mon Oct 10, 2016 12:11 pm

Hi Helen:

This is the first that I have heard that thyroid problems are common in myeloma patients. I was diagnosed with hypothyroidism in 2006, and now have lambda light chain myeloma. I wish some­one had told me to watch for MGUS at the time. I probably could have caught my myeloma before I had such bad bone involvement. Makes me a little angry.

Thanks again for the info.

Kathleen

[Helen L]

Re: MGUS just "body reacting to something"?

by Helen L on Mon Oct 10, 2016 6:09 pm

Hi Kathleen and Joe,

Thanks for sharing about your thyroid problems. Some red flags must have be flying some­where for the poll to have been posted. I hope that researchers somewhere are looking into the con­nection and performing studies. If family doctors knew about the relationship, tests could be ordered to ensure patients can catch myeloma early before it causes terrible bone damage. I know that my thyroid (TSH) is normal, so it seems that not everyone with an M-spike has thyroid problems. But perhaps there is some other immune system connection.

This may be a strange illustration, but chimney sweep's cancer in the 1700's was caused by years of coal soot accumulating on the body. If a chimney sweep stopped working at the job after a few years, then the carcinogenic irritant is eliminated and the likelihood of developing the cancer would drop considerably. In my opinion, the constant immune system battle ("body reacting to something") is like that "irritant".

Thanks again for your feedback and all the best to you both,

Helen

[Julie Phillips]

Re: MGUS just "body reacting to something"?

by Julie Phillips on Mon Oct 10, 2016 8:35 pm

I was diagnosed with multiple myeloma on February 15, 2013. I was on Velcade and dex, then Revlimid and dex, then had a stem cell transplant in July 2013. I relapsed and started treatment February 2016.

In December of 2015 I decided to have half of my thyroid removed because I had a growth that was starting to be visible. Six months prior to having it removed, I had a biopsy. It was non cancerous. Well, that is what the biopsy said. However, once it was removed, it had cancer cells.

Really, I do not want anymore cancer. Luckily, by removing the thyroid, the cancer was removed, so treatment was not necessary. However, I now have to have an ultrasound on the remaining half thyroid every 6 months.

I do not know if multiple myeloma and thyroid cancer are related. All I know is I only want to deal with one cancer at a time.

I am currently on Ninlaro, Revlimid, and dex. My last blood test showed my lambda is finally back in the normal range, but my M number has stalled out and has remained the same after three treatments. I am ready to get off of this ride.

[Helen L]

Re: MGUS just "body reacting to something"?

by Helen L on Tue Oct 11, 2016 12:09 pm

Hi Julie,

I'm so sorry to hear about everything you've had to endure. Dealing with one cancer at a time is difficult enough - let alone two! It is interesting that Nancy's column this week on the Beacon home page also talks about having to deal with two cancers.

I sincerely hope that all goes well with your myeloma blood work and your thyroid. I'm sure everyone who reads your post will be sending prayers or good thoughts your way.

All the best,
Helen