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Newbie with MGUS - on 4 month watch cycle - kinda scared

by MGUS Newbie on Thu Mar 06, 2014 4:19 pm

I am so thankful for the Beacon. I've researched until I'm blue in the face, but there are some very concerning blood test results that I still don't understand.

Long story short - I fell ill with West Nile Virus (encephalitis / spinal meningitis) in November 2012 - almost died - survived. After release from the hospital, I didn't seem to recover. In fact, in 2013 my health degraded to the point that I left my family and home to go to my mother's for respite and care (and I'm 54, my mother is 79!). That shows you how desperate I was feeling.

Every inch of my body hurt, I had a hard time walking, and even though I've been able to hang on to a work-from-home high tech job, my performance has suffered due to exhaustion, pain, and inability to multi-task like I was used to.

I first saw a neurologist who confirmed that it takes a long time to recover from encephalitis, and sent me to a GP, who did bloodwork (and I had a pap smear and a mammogram). The first indicator was a very high sedimentation rate of 91. She initially diagnosed me with polymyalgia rheumatica and put me on a 10mg per day dose of prednisone and sent me to a rheumatologist.

The rheumatologist wanted to diagnose me with fibromyalgia, and I made it quite clear that I considered that a "garbage can" diagnosis, and rejected it. While he didn't appreciate my countering his diagnosis, he asked me to stop the prednisone for a week and have further bloodwork done.

Now, it gets interesting. Bloodwork in October 2013 showed: hi sed rate, hi WBC, positive rheumatoid factor, IFE showed IgA monoclonal protein with kappa light chain specificity, IgM was elevated at 2002.

The rheumatologist said to me "I think you have multiple myeloma" and I just about fell off my chair. I didn't know what it was, but I knew "myeloma" wasn't good. He sent me over to a hematologist/oncologist. Oncologist ordered a full work up due to the elevated IgM levels including full skeleton survey, CT scan, lots more blood work <wink wink>, 24 hour urine for immunofixation, and a bone marrow biopsy. Meanwhile, all I want is my prednisone back to fight the daily pain! But, no cigar.

Results - Oncologist diagnosed me with MGUS since the xrays and CT scans showed no lymphoma or bone lesions. She told me she wanted to follow up with me every 4 months, but told me not to worry about it - "You are more likely to get hit by a bus, than develop multiple myeloma".

Returned to the rheumatologist, who formally diagnosed me with polymyalgia rheumatica/fibromyalgia/MGUS and put me back on prednisone. Yay!

HOWEVER, I asked for a copy of my December 2013 lab results (from oncology) and have poured through them. I guess what everyone wants to know is "Do I have cancer? Am I at risk for developing cancer? How long do I have to live?", etc.

My lab test results show far more detail than my oncologist or rheumatologist discussed with me. Being a "thinking person" (overly so), I want to understand what these things mean - whether it's good news or bad news. Here are the concerning results and if anyone has advice/opinion/direction, I would appreciate it.

Results that sound Good:
Normal female Karyotype. Good.
FISH analysis normal. Good.
Bone marrow- minute kappa predominant plasma cell population (<.5%); plasma cells ~5% of total nucleated marrow cells in a manual 200-cell count; small interstitial lymphocytes seen. Good.
Skeletel survey - mild osteoporosis, mild disc degeneration and retrolisthesis in cervical spine - Normal sounding for my age - no suspicious lytic or blastic bony lesions. Good.
CT Scan - no lymphadenopathy; mild diffuse osseous demineralization. Good.

Results that sound Bad:
Immunofixation Result: Ur [LC]: Bence Jones Protein positive; kappa type.
Immunofixation Result: Se [LC]: IgM monoclonal protein with kappachain specificity.
WBC [LD] x(10)^3/dL: 11.3 High
PLT [LD] x(10)^3/uL: 439.0 High
MPV [LD] u^3: 6.7 Low
MONO # [LD] x(10)^3/m-m^3: 0.7 Low
GLUCOSE [LD] mg/dL: 105.0 High
A/G RATIO [LD]: 1.2 Low
AST [LD] U/L: 12.0 Low
M-Spike, mg/24 hr [LC]: 43 High
M-Spike, %: 53.0 High
M-Spike [LC]: 1.4 High
Kappa/Lambda Ratio,S [LC]: 4.5 High
Free Kappa Lt Chains,S [LC] mg/L: 37.09 High
Gamma Globulin [LC] G/DL: 2.3 High
Immunoglobulin M, Qn, Ser [LC] mg/dL: 2156 High

I realize this is a VERY LONG post and I apologize. I just wonder if my oncologist, who has a fabulous reputation and is highly regarded, has diagnosed me with MGUS rather than a smoldering multiple myeloma or WM. It "feels like" there's probably more of a chance of developing multiple myeloma or WM than getting hit by a bus.

Any thoughts appreciated (and I apologize in advance for the drama, knowing that so many of you are dealing with the REAL disease and I am just stressing over the potentiality).

Thank you all.

MGUS Newbie
Name: MGUS Newbie

Re: Newbie with MGUS - on 4 month watch cycle - kinda scared

by Multibilly on Thu Mar 06, 2014 8:12 pm

Welcome to the forum.

So, you are wondering if you are smoldering and not MGUS?

Your plasma cell count is < 5%
Your M-Spike is 1.4 g/dL (< 3 g/dL)

I am assuming your doc has already ruled out any CRAB issues (C = Calcium (elevated), R = Renal failure, A = Anemia, B = Bone lesions). You already indicated you don't meet the "B" in CRAB.

So, assuming you have no anemia, renal or hypercalcemia issues, you would indeed be diagnosed as having MGUS and you could very well end up being in that stage for the rest of your life with no consequences whatsoever.

If you had any CRAB involvement, you would be neither MGUS nor smoldering, but would instead have symptomatic multiple myeloma.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Newbie with MGUS - on 4 month watch cycle - kinda scared

by MGUS Newbie on Thu Mar 06, 2014 8:34 pm

Thank you for responding. Yes, I am anemic. Calcium is at 10.2, not considered high. I think what I was really after was risk for progression rather than the label. I spent time reading the new studies the following was also concerning:

Kappa/Lambda Ratio,S [LC]: 4.5 High
Free Kappa Lt Chains,S [LC] mg/L: 37.09 High

I do appreciate your response. I guess, it's just watch and wait. I have to learn to not stress.

MGUS Newbie
Name: MGUS Newbie

Re: Newbie with MGUS - on 4 month watch cycle - kinda scared

by Multibilly on Thu Mar 06, 2014 8:47 pm

So, saying that you are anemic is a new piece of information. What is your Hb (hemaglobin) level? Did your doc say what the anemia is caused by? If you are significantly anemic due to myeloma-related issues, you wouldn't be diagnosed with MGUS. It all depends on your level of anemia and its causes.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Newbie with MGUS - on 4 month watch cycle - kinda scared

by MGUS Newbie on Fri Mar 07, 2014 10:52 am

Thank you again for your response. The doctor said I was "slightly anemic", not seriously anemic. HGB and HCT are within normal range. I believe she was looking at the overall CBC/BMP/CMP panel to make that diagnosis.

I think after going through this exercise, there is no real answer for who will progress into multiple myeloma from MGUS and who will not. I guess if the IgM numbers continue to rise, along with the M-spike, there will be more cause for concern.

I was really wondering if the risk for progression was higher due to the Bence Jones protein levels and the free kappa light chains. I was wondering if I had a higher risk of progression and after reading the latest studies, the answer is maybe, maybe not.

Thank you for your responses!

MGUS Newbie
Name: MGUS Newbie

Re: Newbie with MGUS - on 4 month watch cycle - kinda scared

by NStewart on Fri Mar 07, 2014 3:45 pm

MGUS Newbie -

I don't remember the statistics, but it's something like 10% of newly diagnosed MGUS people develop active multiple myeloma within the first year and I think it drops to 1% per year after that. There is no way that I am familiar with of predicting who will progress and who won't. There is also no way to predict life expectancy with active multiple myeloma. Some people survive a few months and others survive 20+ years. Many of us suspect that we had MGUS many years prior to being diagnosed.

With all of your concerns and questions, I would suggest that you find a myeloma specialist in your region for a 2nd opinion. Often local hematologists/oncologists aren't as familiar with the ins and outs of myeloma as a specialist is. It would probably give you a lot of comfort to know that you have a specialist who you can call on. Most specialists are willing to coordinate any treatment with the local oncologist so that you don't have to travel if one isn't near you.

But, so far, your lab results look ok. The fact that the bone marrow biopsy is less than 5% is very good.

Nancy in Phila

NStewart
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: Newbie with MGUS - on 4 month watch cycle - kinda scared

by MGUS Newbie on Fri Mar 07, 2014 3:50 pm

Thank you Nancy.

It was very sweet of you to take the time to reply.

MGUS Newbie
Name: MGUS Newbie


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