I’m a 42-year-old from New Zealand with nonsecretory multiple myeloma. My condition was only diagnosed after I’d incurred significant spinal lesions and my doctor performed a bone marrow biopsy. By this time, I had been reduced from an active sportsman to someone that could no longer walk without a mobility device. My treatment and a transplant appears to have been successful and I’m hoping that my next biopsy confirms that I’m in remission.
Unfortunately, coming from a small country, I’m the first and only nonsecretory patient my haematologist has and, as such, there seems to be no defined process for tracking my disease’s progression. I had assumed that I would need to get a baseline PET/CT scan followed with more scans at regular intervals, or have to undergo regular bone-marrow biopsies to check the disease progression. My doctor has suggested that I only need to come back when I identify new pains or other symptoms, which is a concern.
What I would like to understand is how other nonsecretory patients monitor their disease progression or if there is some standard practice for this.
Forums
3 posts
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Rainz - Name: Ryno
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 41
Re: Nonsecretory multiple myeloma - how to monitor it?
Hi Ryno,
You might find this MB article to be helpful.
Nair, B.J., "Nonsecretory Multiple Myeloma", The Myeloma Beacon, Oct 21, 2011.
You might find this MB article to be helpful.
Nair, B.J., "Nonsecretory Multiple Myeloma", The Myeloma Beacon, Oct 21, 2011.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Nonsecretory multiple myeloma - how to monitor it?
Hi Rainz,
I believe you may be relatively new to the forum, so welcome.
If you haven't already checked, there are actually a lot of discussions here in the forum about nonsecretory myeloma and how to track it. This link will take you to a list of them. (I just typed "nonsecretory" into the forum search box to get the list of discussions at that link.)
Most of the time, you will hear recommendations to track nonsecretory myeloma with either imaging (xrays, MRI, and PET/CT scans), bone marrow biopsies, or the serum free light chain test in those cases where the nonsecretory myeloma isn't fully nonsecretory (i.e., there are still some excess light chains produced by the myeloma, when it's present).
However, a complementary approach is to get regular blood tests and pay attention to what is happening with your:
- Hemoglobin
- Immunoglobulins (IgG, IgA, and IgM)
- Beta2 microglobulin
If you get these tested every 2 months or so, and graph their values, they may be able to help you get a sense of when the myeloma is starting to return. When that happens, one or two of the immunoglobulin subtypes may start to dip, your hemoglobin may start to dip, or your beta2 microglobulin may start to go up. (Dr. Bensinger, a myeloma specialist here in the U.S., mentions beta2 microglobulin as potentially helpful in this forum post,)
If math is something that interests you, you might even be able to figure out how to create an index that combines your lab results into a single number that gives you an overall picture of what is happening with your disease.
Hope this helps a bit. Good luck, and keep us posted on how you're doing.
I believe you may be relatively new to the forum, so welcome.
If you haven't already checked, there are actually a lot of discussions here in the forum about nonsecretory myeloma and how to track it. This link will take you to a list of them. (I just typed "nonsecretory" into the forum search box to get the list of discussions at that link.)
Most of the time, you will hear recommendations to track nonsecretory myeloma with either imaging (xrays, MRI, and PET/CT scans), bone marrow biopsies, or the serum free light chain test in those cases where the nonsecretory myeloma isn't fully nonsecretory (i.e., there are still some excess light chains produced by the myeloma, when it's present).
However, a complementary approach is to get regular blood tests and pay attention to what is happening with your:
- Hemoglobin
- Immunoglobulins (IgG, IgA, and IgM)
- Beta2 microglobulin
If you get these tested every 2 months or so, and graph their values, they may be able to help you get a sense of when the myeloma is starting to return. When that happens, one or two of the immunoglobulin subtypes may start to dip, your hemoglobin may start to dip, or your beta2 microglobulin may start to go up. (Dr. Bensinger, a myeloma specialist here in the U.S., mentions beta2 microglobulin as potentially helpful in this forum post,)
If math is something that interests you, you might even be able to figure out how to create an index that combines your lab results into a single number that gives you an overall picture of what is happening with your disease.
Hope this helps a bit. Good luck, and keep us posted on how you're doing.
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Jonah
3 posts
• Page 1 of 1