I'm looking for information about nonsecretory myeloma. I know that monoclonal proteins can't be detected in the blood or urine, but what else should I know?
Are nonsecretory myeloma and regular myeloma treated the same way? If not, which treatments are particularly good for nonsecretors? Are there any treatments that should be avoided?
Also, how do physicians monitor myeloma in nonsecretors to make sure treatment is working?
Moderator's Note: Since this question was asked, The Beacon has published a full article focused on nonsecretory multiple myeloma. It can be found here:
"Nonsecretory Multiple Myeloma", The Myeloma Beacon, Oct 21, 2011.
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Re: Nonsecretory multiple myeloma
I am a nonsecretor, diagnosed in April 2009. Received three cycles of Revlimid, Velcade, and dex. That was followed by a stem cell transplant. Typical treatment regimen for someone my age (45 when diagnosed). I achieved a complete response based on a bone marrow aspiration following the three cycles of Revlimid, Velcade, and dexamethasone, prior to the stem cell transplant.
The main way the disease is monitored is through bone marrow aspirations and x-rays. Nonsecretors are ineligible for many clinical trials because our disease is not considered measurable.
It is debatable whether or not there is a survival advantage to being a nonsecretor. On one hand, we do not have to worry about damage to our kidneys or other organs caused by m-proteins. However, this advantage is offset by the fact that most of us are diagnosed later rather than earlier. I was stage 3 when diagnosed and had multiple myeloma symptoms for three years prior to being diagnosed. But with no M proteins in my blood, I was thought to have had arthritis. One doctor did suggest that the use of novel agents -- Revlimid and Velcade -- as initial therapy has increased the percentage of patients able to achieve a complete response and this may bode well in increasing the overall survival numbers for nonsecretors. But I am not aware of any studies confirming this.
The main way the disease is monitored is through bone marrow aspirations and x-rays. Nonsecretors are ineligible for many clinical trials because our disease is not considered measurable.
It is debatable whether or not there is a survival advantage to being a nonsecretor. On one hand, we do not have to worry about damage to our kidneys or other organs caused by m-proteins. However, this advantage is offset by the fact that most of us are diagnosed later rather than earlier. I was stage 3 when diagnosed and had multiple myeloma symptoms for three years prior to being diagnosed. But with no M proteins in my blood, I was thought to have had arthritis. One doctor did suggest that the use of novel agents -- Revlimid and Velcade -- as initial therapy has increased the percentage of patients able to achieve a complete response and this may bode well in increasing the overall survival numbers for nonsecretors. But I am not aware of any studies confirming this.
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Matt - Name: Matt Linden
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2009
- Age at diagnosis: 44
Re: Nonsecretory multiple myeloma
Hi Jack,
You may be interested in a few other ongoing discussions in this forum about nonsecretory myeloma:
Tracking Nonsecretory Multiple Myeloma Response to Therapy
Regarding monitoring nonsecretory myeloma, Dr. Berenson said that the first thing to check is whether free light chain proteins can be detected in your blood.
If not, your myeloma would need to be followed by periodic bone marrow biopsies and X-rays, but he cautions that these are not very accurate methods.
IgD Nonsecretory Multiple Myeloma
Dr. Hofmeister said that having nonsecretory myeloma requires that your disease be followed primarily by bone marrow biopsy, which unfortunately can be painful.
non-secretor stymied over numbers
Dr. Bensinger said that if serum free light chain cannot be detected, sometimes beta-2 microglobulin can be monitored to track disease activity. He tends to use MRI and PET scans to track myeloma activity in nonsecretory myeloma patients.
You may be interested in a few other ongoing discussions in this forum about nonsecretory myeloma:
Tracking Nonsecretory Multiple Myeloma Response to Therapy
Regarding monitoring nonsecretory myeloma, Dr. Berenson said that the first thing to check is whether free light chain proteins can be detected in your blood.
If not, your myeloma would need to be followed by periodic bone marrow biopsies and X-rays, but he cautions that these are not very accurate methods.
IgD Nonsecretory Multiple Myeloma
Dr. Hofmeister said that having nonsecretory myeloma requires that your disease be followed primarily by bone marrow biopsy, which unfortunately can be painful.
non-secretor stymied over numbers
Dr. Bensinger said that if serum free light chain cannot be detected, sometimes beta-2 microglobulin can be monitored to track disease activity. He tends to use MRI and PET scans to track myeloma activity in nonsecretory myeloma patients.
Re: Nonsecretory multiple myeloma
I'm a newly diagnosed - age 67. I am a physician, so I have general medical knowledge, but there is a great deal about this disease that I didn't know! I am interested in exchanging information with others.
I appear to be a non-secretor - no heavy chain spikes and serum and urine light chains negative. I had back pain for 3 months, it wasn't getting any better. I got some physical therapy and my PT suggested I see a back specialist. He ordered a lumbar spine MRI expecting to find disk disease - nope, I have multiple myeloma. As bad as this news is the initial impression on the MRI was metastatic carcinoma, so I actually felt relieved (!) when I got my dx from bone marrow aspiration and a PET scan, which showed disease in vertebrae, sternum, and ribs. I have also had a bone survey.
I am in stage 1, luckily. I started Velcade, dexamethasone, and Zometa 4 days after getting my diagnosis. My back pain is already somewhat less severe. I got a fever and flu-like symptoms (temp 101) 48 hours after the Zometa infusion but felt better 18 hours later. I live in Northern California. My oncologist is great terrific, but I'll be seeing a myeloma specialist for a consultation next week
I welcome comments.
Here's to good function and long life for all of us!
I appear to be a non-secretor - no heavy chain spikes and serum and urine light chains negative. I had back pain for 3 months, it wasn't getting any better. I got some physical therapy and my PT suggested I see a back specialist. He ordered a lumbar spine MRI expecting to find disk disease - nope, I have multiple myeloma. As bad as this news is the initial impression on the MRI was metastatic carcinoma, so I actually felt relieved (!) when I got my dx from bone marrow aspiration and a PET scan, which showed disease in vertebrae, sternum, and ribs. I have also had a bone survey.
I am in stage 1, luckily. I started Velcade, dexamethasone, and Zometa 4 days after getting my diagnosis. My back pain is already somewhat less severe. I got a fever and flu-like symptoms (temp 101) 48 hours after the Zometa infusion but felt better 18 hours later. I live in Northern California. My oncologist is great terrific, but I'll be seeing a myeloma specialist for a consultation next week
I welcome comments.
Here's to good function and long life for all of us!
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bobdolgoff - Name: Bob D
- Who do you know with myeloma?: myself!
- When were you/they diagnosed?: 6/18/10
- Age at diagnosis: 67
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