For Dr. Bensinger: Thank you for making yourself available for our questions.
I am a (almost) 59 year old female, diagnosed with multiple myeloma in July 2004 following a biopsy of a solitary plasmacytoma. No other symptoms. It was determined that I am a profound nonsecretor, nothing at all showed up in any of my labs or scans. Following pain, several bone lesions were discovered through PET in Nov. 08 and in June of last year I had an autologous stem cell transplant (ASCT). Prior to the transplant, I still had nothing in my labs, clean bone marrow biopsies, free lights normal, etc. Post transplant, I had numbers!! I had 10-20% in my bone marrow, an M-spike of point one, and lambda light chains. My myeloma onc is stymied and I am bummed to say the least. I am on maintenance thalidomide and my numbers have come into normal range.
This is my question: Why did this bizarre thing happen from the stem cell transplant, and are my numbers really "normal" or am I reverting to being a nonsecretor again? Have you ever heard of a situation like this?
My Hopkins onc said he never has had a patient like this. In fact, he has said that I am the most bizarre case of all he has seen. I really don't want to be special in this way! Any input you can offer would be deeply appreciated.
Thank you, Marguerite in Pennsylvania
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towanda - Name: Marguerite Adair
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2004
- Age at diagnosis: 53
Re: Nonsecretor stymied over numbers
Dr. William Bensinger from the Fred Hutchinson Cancer Research Center said:
"Patients with nonsecretory myeloma remain one of the more challenging groups to follow. In general, the nonsecretory cells are less well differentiated (more primitive since they don't make proteins) and often tend to behave more aggressively.
If the serum free light chain is not informative, sometimes the beta-2 microglobulin tracks disease activity. In addition patients generally do not have normal levels of normal antibodies unless they are in remission. I tend to use MRI and PET scans more frequently in patients with nonsecretory multiple myeloma to track disease activity.
Having a "normal" bone marrow pretransplant and one with 10-20% myeloma cells post transplant happens because, unlike leukemia, myeloma in the bone marrow is patchy. This means that the distribution of abnormal cells in the marrow is not uniform, and one biopsy may show lots of disease while another may show very little, even when done on the same day. At very low levels, as is typical with nonsecretory disease, the SPEP, immunofixation or free light chains may be "positive" with one test and "negative" with the next."
"Patients with nonsecretory myeloma remain one of the more challenging groups to follow. In general, the nonsecretory cells are less well differentiated (more primitive since they don't make proteins) and often tend to behave more aggressively.
If the serum free light chain is not informative, sometimes the beta-2 microglobulin tracks disease activity. In addition patients generally do not have normal levels of normal antibodies unless they are in remission. I tend to use MRI and PET scans more frequently in patients with nonsecretory multiple myeloma to track disease activity.
Having a "normal" bone marrow pretransplant and one with 10-20% myeloma cells post transplant happens because, unlike leukemia, myeloma in the bone marrow is patchy. This means that the distribution of abnormal cells in the marrow is not uniform, and one biopsy may show lots of disease while another may show very little, even when done on the same day. At very low levels, as is typical with nonsecretory disease, the SPEP, immunofixation or free light chains may be "positive" with one test and "negative" with the next."
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