My husband was diagnosed with myeloma around mid-July after undergoing a routine endoscopy and colonoscopy. He initially went for those tests because he was found to be anemic after a routine company physical, so they thought something was going on in his digestive tract. Sure enough, they found a few ulcers and the gastroenterologist started treating him for the ulcers.
His anemia did not improve – it actually got worse after the treatment – so the doctor sent him to a hematologist / oncologist for further evaluation. Within about a week of seeing her, he was diagnosed with myeloma. The initial bloodwork showed his lambda light chains were in the 7000 range. His hemoglobin level at diagnosis was 8.5. The hematologist told us that she had never seen someone so anemic with no other symptoms.
After reading some of the posts on here I am beginning to get the impression that the elevated lambda light chains are indicative of the more ominous chromosomal expressions of this disease. My husband has not asked about what the FISH analysis indicated because he felt it was unnecessary since he is of the mindset that he will do whatever the doctor tells him to do, so the rest does not matter. This leaves me extremely frustrated, in that I have urged him to get a second opinion in regards to treatment just to make sure he is getting the best possible treatment for his disease and, like I said, he does not feel it is necessary.
We are a very short train ride away from Sloan Kettering since we live on Long Island, yet he still resists going there for a second opinion. From what I do understand, the hospital he is being treated out of has an excellent cancer center, but I want more for him.
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Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: Lambda light chain myeloma
Melanie,
While I generally respect the wishes of the patient, I agree with you that it would be great if you could get a second opinion at Sloan Kettering and your husband could be under the care of a cancer doc that specializes in multiple myeloma.
I see a great blood cancer doctor for my routine monitoring, but he is not a "multiple myeloma specialist". So I also periodically see a multiple myeloma specialist that does research and publishes papers in the field of multiple myeloma.
If you don't mind me asking, what center is he currently being treated at? Maybe turn the visit to Sloan Kettering into a lunch date?
You can also request copies of the earlier lab reports from the current doctor's office and simply review the bone marrow biopsy test results yourself (a bone marrow biopsy report is not easy to interpret for a layman, but you will likely find some comments on whether there have been some significant mutations that have been found).
Note that just because your husband might have an elevated free light chain value, this does not mean that he has "ominous chromosomal expressions".
Please also include the units of measure (mg/dL, etc) when citing a lab result such as the lambda free light chain value.
Hope this helps.
While I generally respect the wishes of the patient, I agree with you that it would be great if you could get a second opinion at Sloan Kettering and your husband could be under the care of a cancer doc that specializes in multiple myeloma.
I see a great blood cancer doctor for my routine monitoring, but he is not a "multiple myeloma specialist". So I also periodically see a multiple myeloma specialist that does research and publishes papers in the field of multiple myeloma.
If you don't mind me asking, what center is he currently being treated at? Maybe turn the visit to Sloan Kettering into a lunch date?
You can also request copies of the earlier lab reports from the current doctor's office and simply review the bone marrow biopsy test results yourself (a bone marrow biopsy report is not easy to interpret for a layman, but you will likely find some comments on whether there have been some significant mutations that have been found).
Note that just because your husband might have an elevated free light chain value, this does not mean that he has "ominous chromosomal expressions".
Please also include the units of measure (mg/dL, etc) when citing a lab result such as the lambda free light chain value.
Hope this helps.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Lambda light chain myeloma
I have lambda light chain myeloma, and my first symptom was an unusual shortness of breath when loading up for a fishing trip on a Saturday.
I didn't have much energy over the weekend, but I did improve and by the time an appointment with my hematologist came up on Tuesday, I considered cancelling it. I was seeing him every 6 months to monitor CLL.
Tuesday afternoon, I was in the hospital with an M-spike over 5000 (mg/dl?), a hemoglobin at 7.3 and creatinine at 6+, but not really feeling bad at all other than still a feeling of shortness of breath.
I didn't have much energy over the weekend, but I did improve and by the time an appointment with my hematologist came up on Tuesday, I considered cancelling it. I was seeing him every 6 months to monitor CLL.
Tuesday afternoon, I was in the hospital with an M-spike over 5000 (mg/dl?), a hemoglobin at 7.3 and creatinine at 6+, but not really feeling bad at all other than still a feeling of shortness of breath.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Lambda light chain myeloma
Hi Melanie, I am being treated at Memorial Sloan Kettering, and I strongly recommend the Myeloma Service there. It was easy to make my initial appointment there, just a phone call. As Multibilly said, it really is important to be treated by a myeloma specialist. Not to mention, there are lots of good places for your lunch date in the vicinity of the MKSCC myeloma clinic. 
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Lambda light chain myeloma
Dear Melanie,
Patients with free light chain myeloma are more vulnerable to kidney damage caused by the disease, but light chain myeloma does not necessarily mean that there are high risk cytogenetic abnormalities present. Knowing the stage, LDH level at diagnosis and the patient's cytogenetic profile are useful for assessing prognosis.
Sloan Kettering is terrific and would be a great place to go over these issues and ensure things are on the right track.
Take care!
Pete V.
Patients with free light chain myeloma are more vulnerable to kidney damage caused by the disease, but light chain myeloma does not necessarily mean that there are high risk cytogenetic abnormalities present. Knowing the stage, LDH level at diagnosis and the patient's cytogenetic profile are useful for assessing prognosis.
Sloan Kettering is terrific and would be a great place to go over these issues and ensure things are on the right track.
Take care!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
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