My husband, Hal (age 75), is expecting a diagnosis of some form of myeloma when he meets with his hematologist-oncologist on Monday, February 20, 2017. He was a healthy 12-year prostate cancer survivor (with lots of arthritic joints) until we found ourselves in the myeloma world, beginning in January of 2017. Here is the story of our last 5 weeks, and why we are trying to figure out what all of this means. We live in the metro Detroit, Michigan, USA area. Insights? What should we be braced for?
Jan 5, 2017 - During an ER visit for what we thought was a kidney stone, a routine pelvic x-ray revealed two lytic lesions at L2 (2.6 cm x 2.1 cm) and T11 (8 millimeter).
Jan 19, 2017 - MRI confirmed above, but did not offer any additional info.
Jan 20, 2017 - ER trip for very high heart rate and low blood pressure. Hospitalized for 2 days and diagnosed with atrial fibrillation and placed on Eliquis (apixaban) (blood thinner). CBC taken shows the following within normal ranges: BUN, creatinine, calcium, albumin, ALP. PSA is zero.
Astute ER resident orders a
Serum Protein Electrophoresis (SPEP):
Protein Total: 5.4
Albumin: 3.52
Alpha 1: 0.20
Alpha 2: 0.49
Beta: 0.50
Gamma: 0.69
Interpretation: Abnormal. “A small amount of monoclonal protein (0.3 g/dL) is present.”
Same ER resident also orders random
Urine Protein Electrophoresis
Protein Urine: <2 mg/dL
“A tiny kappa band is noted. Its significance is unclear.”
Jan 31, 2017 - We meet with a hematologist-oncologist, who ordered the following:
Free Light Chains:
Free Kappa: 59.29 [very high]
Free Lambda: 1.33
Free K/L Ratio: 44.58 [very high]
Beta 2 Microglobulin, Serum:
2.07 [just above normal range]
Lactate Dehydrogenase:
167 U/L
Bone Survey:
No additional suspicious osteolytic abnormalities.
Complete Blood Count With Diff and RE:
WBC 7.4 bil/L [3.5 - 10.1]
RBC 4.6 tril/L [4.31 - 5.48]
Hemoglobin 14.5 g/dL [13.5 - 17.0]
Hematocrit 42.8 % [40.1 - 50.1]
MCV 93 fL [80 - 100]
MCH 32 pg [28 - 33]
MCHC 34 g/dL [ 32 - 35]
RDW SD 45 fL [37 - 47]
RDW CV 13 % [12 - 15]
Platelet 219 bil/L [150 - 400]
Neutrophils 4.3 bil/L [1.6 - 7.2]
Lymphocytes 2.0 bil/L [1.1 - 4.0]
Monocytes 0.9 bil/L [0.0 - 0.9]
Eosinophils 0.2 bil/L [0.0 - 0.4]
Basophils 0.0 bil/L [0.0 - 0.1]
Immature Granulocytes 0.03 bil/L [0.00 - 0.04]
Platelet Estimate Adequate
RBC Morphology Unremarkable
Reticulocytes 42 bil/L [21 - 100]
IRF 0.03 [0.01 - 0.16]
Reticulocyte Hemoglobin 33.0 pg [30.6 - 37.9]
Bone Marrow Aspirate Flow Cytometry:
“Kappa-monotypic plasma cells”
Bone Marrow Biopsy:
Pathology report not yet released.
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Wordy Diva - Name: Terry O.
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: Jan. 2017 MGUS; Mar. 2017 multiple myeloma
- Age at diagnosis: 75
Re: Is it multiple myeloma?
I have studied the diagnostic criteria for MGUS and multiple myeloma, and I am still confused.
On February 25, 2017, the hematologist-oncologist diagnosed my husband (age 75) with MGUS, even though he has two lytic lesions (!) at L2 and T12.
Blood work was basically good -- no other CRAB symptoms. Bone marrow biopsy had <3% plasma cells. He does not seem to "fit" neatly into any one category. (MGUS, smoldering myeloma, or active multiple myeloma).
At our insistence, he is going to have a spinal needle biopsy of the larger lesion.
Is it common to be diagnosed with MGUS even though you had more than one known lytic lesion?
On February 25, 2017, the hematologist-oncologist diagnosed my husband (age 75) with MGUS, even though he has two lytic lesions (!) at L2 and T12.
Blood work was basically good -- no other CRAB symptoms. Bone marrow biopsy had <3% plasma cells. He does not seem to "fit" neatly into any one category. (MGUS, smoldering myeloma, or active multiple myeloma).
At our insistence, he is going to have a spinal needle biopsy of the larger lesion.
Is it common to be diagnosed with MGUS even though you had more than one known lytic lesion?
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Wordy Diva - Name: Terry O.
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: Jan. 2017 MGUS; Mar. 2017 multiple myeloma
- Age at diagnosis: 75
Re: Is it multiple myeloma?
If the multiple lytic lesions were determined to be caused by multiple myeloma, then his diagnosis would indeed be mutiple myeloma and treatment would be warranted. But without knowing whether the lytic lesions are attributable to myeloma, then he would meet the diagnostic criteria of MGUS . I'm guessing that the doctor(s) didn't know from the MRI and xray whether the lesions were definitively myeloma-related or not? So, it's good that he is getting a needle biopsy of the lesion to confirm the nature of the lesion. A PET/CT might also be a good idea under the circumstances (the PET/CT would quickly and visually indicate if the lesions were cancerous or not).
I am surprised that you were the ones that had to push for a biopsy under these circumstances. Is your husband being seen by a hematologist that specializes in multiple myeloma? Are you going to one of the centers below? Under the circumstances, there is absolutely no substitute for working a hematologist that specializes in multiple myeloma.
https://myelomabeacon.org/resources/treatment-centers/#Michigan
Good luck and let us know how things turn out.
I am surprised that you were the ones that had to push for a biopsy under these circumstances. Is your husband being seen by a hematologist that specializes in multiple myeloma? Are you going to one of the centers below? Under the circumstances, there is absolutely no substitute for working a hematologist that specializes in multiple myeloma.
https://myelomabeacon.org/resources/treatment-centers/#Michigan
Good luck and let us know how things turn out.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is it multiple myeloma?
Aha! Thanks for your thoughts. So a doctor can rule out multiple myeloma based on all the other tests, even though there are lytic lesions? Interesting. That is certainly what she did.
We were very impressed with the hematologist-oncologist on our first meeting, but less so on the second meeting. (She had not reviewed any of his test results ahead of time and seemed scattered.) She suggested a "wait 3 months and see" as to the lesions. We pushed for immediate biopsy.
I had already checked the list of myeloma specialists in Michigan, and see that both Karmanos (Detroit) and University of Michigan (Ann Arbor) are possible second opinion / treatment options.
He has already had a CT scan, that is how we first found the lesions, and a bone survey. The lesions showed up most clearly on the CT scan.
We were very impressed with the hematologist-oncologist on our first meeting, but less so on the second meeting. (She had not reviewed any of his test results ahead of time and seemed scattered.) She suggested a "wait 3 months and see" as to the lesions. We pushed for immediate biopsy.
I had already checked the list of myeloma specialists in Michigan, and see that both Karmanos (Detroit) and University of Michigan (Ann Arbor) are possible second opinion / treatment options.
He has already had a CT scan, that is how we first found the lesions, and a bone survey. The lesions showed up most clearly on the CT scan.
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Wordy Diva - Name: Terry O.
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: Jan. 2017 MGUS; Mar. 2017 multiple myeloma
- Age at diagnosis: 75
Re: Is it multiple myeloma?
Yesterday, March 13, 2017, my husband, Hal, was diagnosed with multiple myeloma.
His was a difficult diagnosis because his bloodwork is excellent and his bone marrow biopsy showed only 3% plasma cells, BUT he has two lytic spinal lesions, and a needle biopsy from the largest one tested positive for plasma cells. The oncologist stated that Hal does not fall neatly within the normal diagnostic categories (I had studied the diagnostic info on this site and elsewhere and I have been thinking this for a few weeks, as well).
We were told 3 weeks ago (upon results of the bone marrow biopsy only) that he had MGUS. We are now waiting until the oncologist talks with his partner and they formulate a recommendation for treatment. In addition to oral therapy, they mentioned possible radiation of the larger lesion, although Hal does not seem to be in pain specifically from that lesion.
His was a difficult diagnosis because his bloodwork is excellent and his bone marrow biopsy showed only 3% plasma cells, BUT he has two lytic spinal lesions, and a needle biopsy from the largest one tested positive for plasma cells. The oncologist stated that Hal does not fall neatly within the normal diagnostic categories (I had studied the diagnostic info on this site and elsewhere and I have been thinking this for a few weeks, as well).
We were told 3 weeks ago (upon results of the bone marrow biopsy only) that he had MGUS. We are now waiting until the oncologist talks with his partner and they formulate a recommendation for treatment. In addition to oral therapy, they mentioned possible radiation of the larger lesion, although Hal does not seem to be in pain specifically from that lesion.
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Wordy Diva - Name: Terry O.
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: Jan. 2017 MGUS; Mar. 2017 multiple myeloma
- Age at diagnosis: 75
Re: Is it multiple myeloma?
Hi Terri,
I am sorry your husband has this diagnosis. You will learn so much and gain such great support here in the forum. The columns / opinion articles also are very compelling and calming in many ways.
I am sorry your husband has this diagnosis. You will learn so much and gain such great support here in the forum. The columns / opinion articles also are very compelling and calming in many ways.
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Hummingbird
6 posts
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