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Diagnosed today, doctor recommends stem cell transplant

by Blair on Mon Aug 31, 2015 3:35 pm

I was diagnosed with multiple myeloma today and the doctor said he recommends a transplant but is sending me to a national cancer institute for a second opinion and treatment options. Here are some of my test results if anyone could give me their opinions I would appreciate it.

Bone marrow biopsy and aspiration:

Diagnosis - multiple myeloma. Plasma cells constitute approx. 50% of bone marrow cellularity by morphology and CD138 immunostain. Flow cytometric studies show Immunophenotypic evidence of a kappa light chain-restricted plasma cell population consistent with a plasma cell neoplasm.

Peripheral smear:

Mild leukopenia, normocytic anemia, and thrombocytopenia. Rouleaux present. Variant lymphocytes present, rare plasmacytoid lymphocyte present.

Test Level Ref. Range
Immunoglobulin A 5957 High 81-463 mg/dl
Immunoglobulin G 437 Low 694-1618 mg/dl
Immunoglobulin M 4 Low 48-271 mg/dl

Serum kappa free light chain 258.6 High 3.3-19.4 mg/l
Serum lambda free light chain 6.7 5.7-26.3 mg/l
Kappa/lambda ratio 38.60 High 0.26-1.65

Protein/Creatinine Ratio 726 High 22-128 mg/g creatinine
Protein Total 45 High 5-25 mg/dl


No lesions detected, but kidney damage noted.

If you have any thoughts or more info is needed please let me know. Thanks

Blair
Name: Blair
Who do you know with myeloma?: ?
When were you/they diagnosed?: 1996
Age at diagnosis: 36

Re: Diagnosed today, doctor recommends stem cell transplant

by Multibilly on Mon Aug 31, 2015 4:25 pm

Hi Blair,

Sorry to hear about the diagnosis. Good news seems to be that you have no bone damage at this point.

To be clear, you were diagnosed earlier as having MGUS and have never been treated before, right? When was the last time you were tested before you got these latest results?

Looks like you've got IgA kappa type multiple myeloma. And it looks like you've got what is known as "immunoparesis", since your IgM and IgG levels are low in conjunction with your IgA being elevated.

A high protein/creatinine ratio means you are spilling protein into your urine and can indeed signify kidney damage, so you probably want to get on board with treatment soon.

What are the following values from your blood tests?

  • Hemoglobin (it looks like they caught some anemia in the test already).
  • Calcium
  • Creatinine (from your blood test, not the urine test).
  • M-spike (may be called abnormal protein, paraprotein, M-protein, etc) from your serum protein electrophoresis test (SPEP)
There should also be a figure somewhere in the bone marrow biopsy test results that talks about what percentage of cells in your sample were plasma cells (bone marrow plasma cell percentage).

Did they run any FISH or cytogenetic tests that summarized any chromosomal abnormalities (these test results sometimes show up later after you get the initial bone marrow biopsy results)?

Did you have a whole body PET/CT or whole body MRI to determine if you had any lesions present? Or was it an xray skeletal survey that suggested you had no lesions? If you haven't had a PET/CT or MRI, I would suggest getting one as that is the new standard for diagnosing multiple myeloma.

Looks like you are in Pensacola. Where is your doc thinking of sending you for a second opinion? Other folks on the forum in the panhandle may have a good idea of the best place to go.

The choice of transplant versus no-transplant is always a tough and very personal decision. There are many, many threads on this forum that talk about this subject.

Hope this helps a bit.

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

Re: Diagnosed today, doctor recommends stem cell transplant

by Blair on Mon Aug 31, 2015 5:13 pm

Thanks for the help Multibilly. Let me see if I can answer some of these,

- Hemoglobin - Is normal at 13.4; ref. range is 13.4 - 17g/dl.
- Calcium - A little elevated at 10.7; ref. range is 8.6 - 10.3 mg/dl
- Creatinine (from your blood test, not the urine test) - 1.51 (high); ref. range is 0.70 - 1.33 mg/dl
- M-spike - Protein is 10.4 (high); ref. range is 6.1 - 8.1 g/dl

There should also be a figure somewhere in the bone marrow biopsy test results that talks about what percentage of cells in your sample were plasma cells (bone marrow plasma cell percentage).

It is 50%

Did they run any FISH or cytogenetic tests that summarized any chromosomal abnormalities (these test results sometimes show up later after you get the initial bone marrow biopsy results)?

No FISH, but a cytogenetic test was done. The interpretation was normal male karyotype. And then under recommendation - It's unusual to observe normal male karyotype in plasma cell neoplasms due to the number of abnormal cells and/or low spontaneous proliferative activity of the malignant cells. If clinically indicated, FISH studies may be performed to identify cytogenetic abnormalities of prognostic significance in interphase nuclei not observed in the metaphase cells analyzed.

Did you have a whole body PET/CT or whole body MRI to determine if you had any lesions present? Or was it an xray skeletal survey that suggested you had no lesions? If you haven't had a PET/CT or MRI, I would suggest getting one as that is the new standard for diagnosing multiple myeloma.

I had a skeletal survey. No lesions, chest, abdomen, and pelvis CT scan and a MRI that showed some damage at the L-5 S1 but no fractures.

Thanks again for your help. It's greatly appreciated.

Blair
Name: Blair
Who do you know with myeloma?: ?
When were you/they diagnosed?: 1996
Age at diagnosis: 36

Re: Diagnosed today, doctor recommends stem cell transplant

by Blair on Mon Aug 31, 2015 5:17 pm

Forgot to mention that I'll be going to Vanderbilt Ingram Cancer Center in Nashville, TN

Blair
Name: Blair
Who do you know with myeloma?: ?
When were you/they diagnosed?: 1996
Age at diagnosis: 36

Re: Diagnosed today, doctor recommends stem cell transplant

by Multibilly on Mon Aug 31, 2015 5:59 pm

Well, technically, I'm not sure you meet any of the diagnostic criteria (CRAB or MDE) to be classified beyond smoldering multiple myeloma. This will give you an idea of what the latest criteria are:

SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014

But it looks like you are starting to have some kidney issues based on your creatinine level (2.0 mg/dL is the level where you meet the "R" in CRAB based on just the creatinine level).

The figure you provided for your M-spike is not actually your M-spike. That looks like your total protein level from your SPEP. There should be a separate entry on that same SPEP report called abnormal protein, paraprotein, M-protein, etc. It might also be spelled out in a separate notation on that report. The "normal range" for an M-spike is zero.

I'd be asking for a FISH analysis on what's left of the sample from your bone marrow biopsy (they should still have it in the lab).

In any case, it's great that you are getting a second opinion at Vanderbilt. In addition to all of your lab results, I would suggest taking up CDs of all your imaging results so that their radiologist can also review your images.

Good luck. Hope you can take in a show. I love Nashville and all the guitars growing out of the street corners.

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

Re: Diagnosed today, doctor recommends stem cell transplant

by Blair on Mon Aug 31, 2015 7:03 pm

I think I found the M spike would it be:

Abnormal Protein Band 1 4.6 High
Abnormal Protein Band 2 0.1 High


Also it has:

Albumin 3.3 Low
Beta 2 globulin 4.9 High
Gamma globulin 0.4 Low

Blair
Name: Blair
Who do you know with myeloma?: ?
When were you/they diagnosed?: 1996
Age at diagnosis: 36

Re: Diagnosed today, doctor recommends stem cell transplant

by Multibilly on Mon Aug 31, 2015 7:28 pm

Bingo, you found it! You have an M-spike of 4.6 g/dL ~ 4.7 g/dL. It also looks like you have a very small secondary spike (abnormal protein band 2), which is not worrisome and happens some­times.

Note that when it comes to IgA-type multiple myeloma, the M-spike values can be a bit inaccurate for reasons I won't go into here ... So the docs will tend to look at your the IgA values, free light chain values, bone marrow plasma cell percentage, etc, in order to get the whole picture.

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

Re: Diagnosed today, doctor recommends stem cell transplant

by Blair on Mon Aug 31, 2015 7:35 pm

Ok thanks you've been a lot of help. I think I also forgot to mention that I have IgA kappa M protein in my blood and urine, I don't know if that makes a difference, but thought I would mention it.

Blair
Name: Blair
Who do you know with myeloma?: ?
When were you/they diagnosed?: 1996
Age at diagnosis: 36


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