[janes76]

Worried...Diagnosed MGUS last Oct

by janes76 on Wed Mar 25, 2015 8:23 pm

I had never heard of MGUS or multiple myeloma until I had a high TP come back in a test that was actually part of my semi-annual check-up for cholesterol last September. My doc repeated test and referred me to a specialist. I had no idea I was going to see a specialist at the cancer center!

The following are all the test that was done with results. Note: I have had another SPEP test done this past February and also have listed out to the side those new results.

Sorry for the jumbleness, I didn't know how to keep it spaced for easy reading.

Serum Protein Electrophoresis Oct results with standards and then Feb results.
Total Protein.......8.5 H......... 6.1-8.1 g/dL............... Feb 8.5 H
Albumin...............4.1......................3.5-4.7 g/dL............... 4.0
Alpha 1 Globulin........0.3................0.1-0.3 g/dL.............0.3
Alpha 2 Globulin.......0.9................0.5-1.0 g/dL.............0.8
Beta Globulin..........1.1...................0.8-1.4 g/dL.............1.1
Gamma Globulin.......2.2 H............0.6-1.6 g/dL.............2.3 H
ABN BND 1..............1.4 H...................................................1.2 H
Test Comment:
An abnormal monoclonal band present in the gamma region.

Immunoglobulins
IgG .............2393 H................694-1618 mg/dL..........................Feb 2621 H
IgA .................164.......................81-463 mg/dL..........................................159
IgM ...............23 L.......................48-271 mg/dL............................................24 L
INTERPRETATION An IgG lambda monoclonal gammopathy with and additional abnormal free light chain is present.

Free Light Chains
FREE KAPPA, SER............7.8...................3.3-19.4 mg/L...................Feb 8.0
FREE LAMBDA, SER.........296.1 H..............5.7-26.3 mg/L....................301.5 H
FREE K/L RATIO...........0.03 L.............0.26-1.65.......................................0.03 L
COMMENT: In serum, the kappa/lambda ratio of whole immunoglobulin molecules is 2:1, whereas the kappa/lambda ratio of free light chains is 1:1.5. The latter is attributed to the occurrence of lambda light chains as dimers whose serum 1/2-life is approximately 3 times longer then that of monomeric kappa light chains.

I had the first testing in October of SPEP, UPEP, skeletal survey and bone marrow biopsy (BMB).

The BMB had a results comment: **FEW CLONAL PLASMA CELLS DETECTED**
The test shows two GATE columns A and B. The A column shows at the bottom K/L Ratio NA. The B column shows at bottom K/L Ratio 1.75

I'm not finding a % number for monoclonal plasma cells? that I've read about indicating less then 10% for MGUS although the diagnoses has been MGUS.
The skeletal survey showed no lesions. The Immuno Fix - urine test comment stated the M-Spike is too small too quantitate.

I have none of the CRAB symptoms at this time.

From all of this above my new doctor (hematology/oncology specialist) has determined I am currently in MGUS. He is having me do blood labs every 3 months. At the February visit, he stated that if the IgG number continues to rise that he will order an MRI of my mid section to make sure he gets a good look in my bones. He noted that the free lambda number only had a minor increase, so he seems more concerned of the IgG at this point.

So my question is: from what is seen of the results above, is my doctor taking a good course of action? If not, what should I be asking at the next visit?

I am very uptight about all of this at the moment, and could use some extra thoughts.

[Toni]

Re: Worried...Diagnosed MGUS last Oct

by Toni on Thu Mar 26, 2015 12:14 am

Janes,

I think it's really good that you are on the Myeloma Beacon, you've come to the right place.

First, are you seeing an oncologist/hematologist who specializes in myeloma and related disorders including MGUS? Even for those who are low-risk MGUS, patients should see a myeloma specialist. I have read that for the general oncologist only about 1% of their patients will be myeloma, so seeing someone who is very current on diagnostic tests, treatments and new findings is quite important.

Second, I do not remember if you said you had the actual SPEP test done? Your result would be posted like this: 0.00 d/gl Most people with MGUS have a paraprotein/monoclonal or m-spike less than 3.0 d/gl.

Third, has your doctor given you an explanation for your high protein?

Do you have the complete report from your BMB? And where was the BMB done, on your hip or your sternum?

Sometimes BMB's will hit a spot where there are no myeloma or few plasma cells. This may be the case here.

So I gather your next appointment with this doctor is in May?

Without the actual measurement of the M-spike, the results of the SPEP, we really can't conclusively say MGUS (remember I'm not a doctor, but I think your immunoglobulins can be low or high but not be attributed to monoclonal gammopathy).

So I would encourage you to either see if this test was actually done, or if not, see if your current onc/hem commonly treats myeloma patients.

Remember, I'm not a doctor, but from what I've learned, I personally would be concerned with your k/l ratio. Your lambda is very high and it's causing your k/l ratio to be quite low.

You may want to seek the advice of a myeloma specialist so that he/she can delve into some of the unanswered questions that the above tests ask. If you need to find someone in your area, please let us know where you live so we can suggest physicians or facilities who have some expertise in myeloma.

The good thing is that your BMB didn't find many plasma cells and your scan did not reveal any bone abnormalities. So those are both positive

All of this can be very stressful. Please be sure to ask questions on this forum as there are some truly brilliant minds and good hearts here.

I hope that one of the physicians who periodically check in on our posts may look at your numbers too.

Hang in there! Take a deep breath. You WILL get through this!

[Multibilly]

Re: Worried...Diagnosed MGUS last Oct

by Multibilly on Thu Mar 26, 2015 8:18 am

Hi Janes,

Toni provided some good advice.

First off, I'm not a doc, so please verify everything I say with yours.

It looks like you did have an SPEP done, and you show a serum M-spike (ABN BND 1) of 1.4 g/dL (different labs call out and represent the M-spike differently, which drives all of us nuts). This is a pretty low M-spike and this is the M-spike you use for determining if you have MGUS (< 3.0 g/dL) versus smoldering multiple myeloma (> 3.0 g/dL). So, this is good news.

Note that a BMB can sometimes be hit and miss in measuring clonal plasma cells since the disease isn't spread evenly throughout one's bones. But I doubt that your doctor would suggest getting another BMB at this point.

While I'm not a doc, I think that with your low M-spike and other results, that your doc is right on with an MGUS diagnosis. It appears to be of the IGG-Lamda type, which is the most common variation of multiple myeloma.

As your doctor suggested, it's pretty standard practice with MGUS to simply routinely re-run these same blood tests, and then get re-imaged if any of your numbers start to deteriorate. The only thing I would be debating is whether to do an MRI versus a PET/CT if you needed to get re-imaged. You might want to see this article to understand the tradeoffs. https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html

Try to remember that the risk of MGUS progressing to symptomatic multiple myeloma is only about 1%/year. A lot of folks go through life with MGUS and never even know they have it. So, I would try not to be uptight about all this given these odds.

Lastly, even though you only have MGUS, being seen by a multiple myeloma specialist (if only occasionally or when your numbers change quite a bit) is a good idea, as Toni recommends.

Last edited by Multibilly on Thu Mar 26, 2015 8:32 am, edited 1 time in total.

[Toni]

Re: Worried...Diagnosed MGUS last Oct

by Toni on Thu Mar 26, 2015 8:30 am

Multibilly - thank you for that clarification.

All the best, Janes!

[janes76]

Re: Worried...Diagnosed MGUS last Oct

by janes76 on Thu Mar 26, 2015 11:11 am

Thanks for responses so far.

To answer a few questions: As Multibilly did see, yes, as I stated I did have all the test run on me at the very beginning in October. I see from different readings that not all testing facilities give the results the same way. But I did list the results for the SPEP for both October and February. My next labs will be June 2.

My current doc specialist does also treat myeloma patients. He talked of a few different things that can be done if this progresses too fast. He also mentioned that there are new treatments showing up every day also. So I trust that he is up to date on this disorder. That doesn't mean that I have ruled out a second opinion if I deem it truly necessary.

I just had a CBC test done this past Monday for part of a cholesterol checkup. My WBC is 8.1. My RBC is 4.56. My hemoglobin is 14.8. On my metabolic panel, my calcium is 9.8, Total Protein is 8.3. The only thing that showed out of standard range was the glucose,it was 110. I have been considered a pre-diabetic for about 10 years. My A1c level is the only thing that is saving me each time, I'm always with in normal barely.

Not sure if any of these results help or not, but I thought I would list them.

Last edited by janes76 on Thu Mar 26, 2015 9:06 pm, edited 1 time in total.

[Multibilly]

Re: Worried...Diagnosed MGUS last Oct

by Multibilly on Thu Mar 26, 2015 11:48 am

Hi Janes,

It does indeed look like you have no CRAB symptoms, at least the "C", "A" and "B" in CRAB based on what you have communicated. You would also want to check your creatinine level to see if any kidney issues may be developing (the "R" in CRAB). But I doubt that is likely given your other figures.

Your oncologist sounds quite competent and I'm guessing that you like the doc, which is important. But there is a difference between a hematologist/oncologist that has some multiple myeloma patients in their practice versus a multiple myeloma specialist that focuses exclusively on this class of disease, participates in multiple myeloma research and clinical trials, attends multiple myeloma related forums and/or presents at these forums, etc.

It probably isn't critical that you find a specialist right away given you are at an MGUS level and given your very decent marker levels. But if you let us know what city you are in, folks on this forum can suggest some facilities and/or specific docs to seek out at your leisure.

Note that you can always keep your current doc (especially if you like him/her) and just consult with a specialist now and then or just once for a second opinion to hear that specialist's view and be established as a patient with that specialist, should you ever need him/her. This happens to be the setup that I use since I don't have a true multiple myeloma specialist in my city. It's comforting knowing that you have an identified specialist to go to in the unlikely event that you should ever progress to symptomatic multiple myeloma....at least I find this to be the case.

Take care.

[janes76]

Re: Worried...Diagnosed MGUS last Oct

by janes76 on Fri Mar 27, 2015 10:58 am

My creatinine level also came back fine... 0.97

During discussion at each of my labs follow up with the doctor, each time he has mentioned enough for me to now understand what he is watching. Which from what I have heard him say, he is keeping a close eye on each of the areas that could possibly present a symptom, which in turn could mean things are progressing.

So it seems to me that from everything I have read, plus the opinions that each give according to their own understanding of this disorder, my doc is taking all the necessary steps to make sure he is watching me as closely as possible to help take care of me.

I see a lot of pushing toward second opinions. I am of the belief that if 'I' feel my doctor is not showing competent or is not taking necessary steps to take care of me, then yes, it would be time to look into a second opinion. And thus, it is up to me to gather all the necessary info that I can find to educate myself about what is happening with me and to try to understand the results of my test as best I can also, which is why I posted to this forum in hopes to see what others have to say.

Multibilly, I am located in the Shenandoah Valley in Virginia. Unless there is someone located in Harrisonburg or Charlottesville Virginia, then I already know the closest myeloma specialist would be anywhere from 2-3 hrs from me, since I do not live near a 'big' city. If there is someone closer, that would be great for when/if I need a consult.

I appreciate the thoughts and advice that is given, ultimately it will have to be my choice as to what to do and when. Please understand, I am not taking this litely, this is my health and my life that I am now having to watch very closely for the rest of my life. That IS a lot to take in!