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DippyDoo's Journey

by Dippydoo on Fri Feb 17, 2017 12:22 am

Hi all,

I have been mostly lurking and reading trying to educate myself. Only a few chosen family and friends have been told so far. I am still in the process of finding out exactly where I'm at in this journey. I'm scheduled for a bone marrow biopsy next week and hopefully will have a better idea after results come back.

Let me start about 10 years back. I went to GP complaining of fatigue and muscle and joint pain several times over a few years, was diagnosed with depression, I thought funny, I didn't feel depressed, but every antidepressant they tried didn't help. I was tested for MS, I had MRI's with and without contrast, CT scan. I was told I had ruptured and bulging disks in lower back, which explained the back pain.

A few years later, after some blood test was conducted, suddenly I had a very high ANA come back on a blood test. Lupus was mentioned and I was scheduled for an appointment with a rheumatologist. She ran more blood tests and X-rays and said I had fibromyalgia. Several more blood test later the ANA never showed up again.

A few years later my GP started sending out test results by mail. This is when I noticed in my blood work that my IgG would be slightly high, I didn't know what it meant, if anything, so I asked him. He simply said as long as everything else is good it means nothing. My rheumatologist never mentioned an evaluated IgG, but schedule my appointment every 6 months and always did X-rays. I never could get copies of test results from her office, I was always told we will mail you a copy and I never got them.

Than all the sudden the rheumatologist left town and most of her patients weren't notified. I was one of them, Living in West Virginia, rheumatologists are far and few in between. It took me almost 1 1/2 years to find and get an appointment with another one. My GP conducted blood tests every 4 month due to low thyroid and adjusting my medication when needed.

I started noticing the IgG. Sometimes it would be high, other times in normal range. One time when the level showed high, and I had nothing better to do, I plugged it into Google just to see what it meant. Well, you know you're not suppose to look your symptoms up on the internet because it will scare the heck out of you! :shock: The first thing that popped up was multiple myeloma.

I was horrified, with my dad dying from leukemia at 65 and my brother died at 52 from a heart attack, but a few months before he died he had kidney failure and was being tested for bone cancer. My mother died at 62, 5 year prior she had broken her arm and knee, had to have pins and bars put in to fix them, doctor said her bones were like mush when they attempted to push on them to put them back in place?!? Yet they didn't test her for anything. Just assumed it was osteoporosis.

My first appointment with the new rheumatologist he knew something was wrong right away. Several tests and appointments later he was sending me to an oncologist within a month of my first appointment with him. The oncologist did full body x-ray, blood tests. He first said MGUS, but on the second appointment stated he thought it may be smoldering myeloma due to the IgG being 2272 mg/dl, and wanted to do a bone marrow biopsy. All other results appear 'normal' except low vitamin D from what I can tell. Results of the 24-hour urine is not in yet, he said the full body x-ray came out clear.

Feb 6, 2017

IMMUNOGLOBULIN A 80 mg/dL 40 - 350 mg/dL
IMMUNOGLOBULIN M 198 mg/dL 50 - 300 mg/dL
IMMUNOGLOBULIN G 2272 mg/dL 650 - 1600 mg/dL

WBC 12.0 10 3.5 - 10.3 10
RBC 4.85 10 3.80 - 5.24 10
HGB 14.0 gm/dL 11.8 - 15.8 gm/dL
HCT 42.0 % 34.6 - 46.2 %
MCV 86.6 fl 82.3 - 96.7 fl
MCH 28.8 pg 27.6 - 33.2 pg
MCHC 33.3 gm/dL 32.6 - 35.4 gm/dL
RDW 13.1 % 12.4 - 15.2 %
PLATELET CT 262 10 140 - 440 10
MPV 9.8 fl 6.6 - 10.2 fl
PMN'S 72.2 % %
LYMPHOCYTES 19.5 % %
MONOCYTES 6.5 % %
EOSINOPHIL 1.1 % %
BASOPHILS 0.7 % %
PMN ABS 8.7 10 1.5 - 6.4 10
LYMPHS ABS 2.4 10 0.9 - 3.4 10
MONOS ABS 0.8 10 0.2 - 0.9 10
EOS ABS 0.1 10 0.0 - 0.5 10
BASOS ABS 0.10 10 0.00 - 0.20 10

TOTAL PROTEIN 8.1 gm/dL 6.4 - 8.3 gm/dL
ALBUMIN FOR ELP 54.3 % 59.7 - 70.6 %
GLOBULIN 45.7 % 29.4 - 40.3 %
ALPHA 1 2.6 % 1.4 - 2.7 %
ALPHA 2 8.6 % 7.2 - 11.1 %
BETA 10.0 % 8.0 - 14.7 %
GAMMA 24.5 % 8.4 - 16.3 %

SERUM ELP A dense M-spike is present at
proximal gamma fraction, consistent with
monoclonal gammopathy

KAPPA FREE LIGHT CHAINS 3.42 mg/dL 0.33 - 1.94 mg/dL
LAMBDA FREE LIGHT CHAINS 1.33 mg/dL 0.57 - 2.63 mg/dL
KAP/LAM FREE LT CHAIN RATIO 2.57 0.26 - 1.65

Dec 13, 2016

IMMUNOGLOBULIN G 2277 mg/dL 650 - 1600 mg/dL
IMMUNOGLOBULIN M 215 mg/dL 50 - 300 mg/dL
IMMUNOGLOBULIN A 76 mg/dL 40 - 350 mg/dL

SERUM ELP The M-protein is confirmed to be
IgG kappa monoclonal gammopathy and
underlying plasma cell dyscrasia.

VITAMIN D 25 HYDROXY 23 ng/mL 30 - 100 ng/mL


I'm not sure where the M spike is in these results, if anywhere at all. It's all a little confusing to me. Once the bone marrow biopsy is completed and the results are in, I'll need to move forward and try to find a specialist reasonably close, if at all possible. I seem to have a bit of bad luck when it come to finding a good reliable doctor, as you can see.

Well that has been my journey so far.

Truly hope all here are doing well.

Dippydoo
Name: DippyDoo
Who do you know with myeloma?: Myself MGUS
When were you/they diagnosed?: 2/9/2017
Age at diagnosis: 49

Re: DippyDoo's Journey

by Multibilly on Fri Feb 17, 2017 10:24 am

Hi DippyDoo,

If you are looking at online lab results, note that the M-spike won't always show up on the online summary. You should therefore request a copy of the original serum protein electro­phoresis (SPEP) test in order to locate your M-spike level (which might be mentioned in a separate notation on that report and may be referred to as an abnormal protein band, M-protein, paraprotein, etc).

But I can tell from your IgG level that your M-spike is likely only in the neighborhood of 1 g/dL and certainly not higher than 2 g/dL. For a diagnosis of smoldering myeloma, your M-spike would need to be 3 g/dL or your would need to have a bone marrow plasma cell percentage >= 10 % (this value will come from your bone marrow biopsy test results). I'm not a doc, but I'm guessing that this looks more like MGUS based on what you've posted here. But the bone marrow biopsy will provide the confirming information.

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

Re: DippyDoo's Journey

by Dippydoo on Fri Feb 17, 2017 4:44 pm

Thank you, Multibilly, for your reply, I am definitely praying for a diagnosis of MGUS after the bone marrow biopsy. That sounds so weird to say :( But given the other options, MGUS would be OK with me at this point! Yes, it is an online MyChart that I got the results from. Next appointment I will ask for a copy of their printed version.

Dippydoo
Name: DippyDoo
Who do you know with myeloma?: Myself MGUS
When were you/they diagnosed?: 2/9/2017
Age at diagnosis: 49

Re: DippyDoo's Journey

by Dippydoo on Fri Feb 24, 2017 4:44 pm

OK, for anyone interested, I got the printed version of my lab results.

For the bone scan x-ray it says everything was clear of any lytic lesions.

Interpretation of the IgG kappa paraprotein, IgG is 23 g/L (2.3 g/dL). Which is higher than I expected.

For the protein electrophoresis urine, protein is undetectable by electrophoresis.

Normal urine immunofixation, negative for monoclonal free kappa or lambda light chains (Bence Jones protein).

In the serum,

Albumin fraction: 55.9 (59.7 - 70.6) Low
Gobulin fraction: 44.1 (29.4 - 40.3) High
Gamma fraction: 23.9 (8.4 - 16.3) High ,

Gamma monoclonal band present.

The other information in the printed chart matches what I posted above.

To me the urine sample appears to be good results. In 14 days the bone marrow biopsyresults will be in. Best wishes and prayers to everyone!

Dippydoo
Name: DippyDoo
Who do you know with myeloma?: Myself MGUS
When were you/they diagnosed?: 2/9/2017
Age at diagnosis: 49

Re: DippyDoo's Journey

by Multibilly on Sat Feb 25, 2017 12:11 am

It's peculiar that you have an M-spike of 2.3 g/dL (2300 mg/dL) and a total IgG level of 2272 mg/dL. Keep in mind that

your total IgG level = level of your healthy / normal IgG + your IgG M-spike.

Therefore, you shouldn't have an IgG M-spike larger than your total IgG level (otherwise, you would have a negative value for the your healthy IgG level). So either the M-spike or total IgG measurement is likely off.

I also once had an IgG M-spike larger than my total IgG reading. My oncologist told me to simply disregard that M-spike reading and to get re-tested. I got re-tested using a different lab and the new results came back with more believable readings.

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

Re: DippyDoo's Journey

by Dippydoo on Sat Feb 25, 2017 11:24 am

That's interesting, Multibilly, I didn't know that. They did draw more blood but didn't tell me what for. That sounds a little scary, hopefully it is a mistake. Thanks for your input, I'm a little sore this morning but healing well.

Hope everyone has a great day!

Dippydoo
Name: DippyDoo
Who do you know with myeloma?: Myself MGUS
When were you/they diagnosed?: 2/9/2017
Age at diagnosis: 49

Re: DippyDoo's Journey

by Dippydoo on Tue Mar 14, 2017 6:08 pm

Update:

Got the results of the bone marrow biopsy this past Friday. Doctor said 5%. At first he told me I was smoldering and at 30% it is considered active?!? :shock: But when I questioned why he felt it was smoldering instead of MGUS, he stated "Well technically I guess it's MGUS, but your IgG is pretty high at 2272".

I tried to get a copy of the bone marrow biopsy results, but the receptionist couldn't find them and said she would mail me a copy. So I'm good for now and pretty certain about the MGUS diagnosis given the bone marrow biopsy of 5% with no other criteria. So the next step for me is finding another hematologist with more experience with MGUS, smoldering multiple myeloma, and multiple myeloma ;)

Hope everyone is having a good day :)

Dippydoo
Name: DippyDoo
Who do you know with myeloma?: Myself MGUS
When were you/they diagnosed?: 2/9/2017
Age at diagnosis: 49

Re: DippyDoo's Journey

by Multibilly on Tue Mar 14, 2017 6:56 pm

Hi Dippydoo,

Good idea about seeking out a specialist ;-)

If you let folks on the forum know what city you are in, you may get some good advice on some multiple myeloma specialists in your area.

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

Re: DippyDoo's Journey

by Dippydoo on Mon Feb 26, 2018 10:05 pm

Hi All,

I haven't posted for awhile, Just wanted to give an update now that I have a few minutes. :)

I also have fibromyalgia, so any weird symptoms I have had in the past were blamed on that and not to many worries. I mentioned to my MGUS doctor that I was having pain in my arm pits. She checked the blood tests and everything appeared normal. So lymphoma is not suspected. She wanted me to get a mammogram, just to be on the safe side. All turned out normal with the mammogram, but there was still pain and slight swelling along the top of the breast and arm pits and a really bad flare up of fibromyalgia.

At some point I also started having mouth pain around a bridge I had put in a few years ago. Went to dentist and he put me on antibiotics, with in about 3 days pain and swelling starts to go away even the fibromyalgia flare had stopped which usually takes weeks to months to go away. During the week I was on the antibiotics, I was totally pain free! The minute I ran out, everything was back with a vengeance. The pain in my mouth and fibromyalgia flare along with the arm pit pain and swelling :(

So I went back to the dentist for the mouth pain and he gave another round of antibiotic and scheduled another appointment to fix the bridge. So, upon starting the antibiotics, within a few days I was pain free again. :shock:

This I truly don't understand, So at my MGUS appointment today I mentioned this just in case it had any significance, and she was just as stumped as I was 8-) So once I'm out of them this time and the bridge is fixed, if the pain and swelling comes back, I'm at a loss as what to do. :roll:

But on the bright side I have graduated to yearly appointments instead of every 6 months. Everything has appeared fairly stable the last year and a half, so I feel pretty comfortable with it.

I hope everyone is doing good and feels well.

Dippydoo
Name: DippyDoo
Who do you know with myeloma?: Myself MGUS
When were you/they diagnosed?: 2/9/2017
Age at diagnosis: 49


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