So, the good news is my blood pressure is down, and I am starting to feel like myself again.
The bad news is, my oncologist said the remission is over and there are now two areas of active myeloma. I am nine months past my stem cell transplant. I stopped maintenance therapy due to the side effects, and that may have been a mistake.
My ratio is fine, but the doc said something about this being nonsecretory. I have a chromosomal abnormality that I am also trying to wrap my head around. As usual with this disease, I have more questions than answers. Back to chemo. If anyone is familiar with nonsecretory myeloma, I would love to have your input.
Forums
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: Relapse 9 months after transplant - now nonsecretory
Sorry to hear about your relapse. To learn more about nonsecretory multiple myeloma, type "nonsecretory" in the search box at the very top of the page on the main menu bar. There are a number of articles/opinions on the topic. Also you can also type it into the "search all forums" box for discussions on it.
Nonsecretory multiple myeloma is harder to track because there is no M spike and therefore, is not trackable by the standard SPEP test. The sFLC Assay is one test that might track it, but even that test will not show it at times.
Ron
Nonsecretory multiple myeloma is harder to track because there is no M spike and therefore, is not trackable by the standard SPEP test. The sFLC Assay is one test that might track it, but even that test will not show it at times.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Relapse 9 months after transplant - now nonsecretory
So sorry to hear about your relapse. Nine months is far too short, after all that we go through during an auto stem cell!
My myeloma is nonsecretory. I've never had an abnormal serum light chain level, even while having several bone destroying lesions, including a large kappa-restricted plasmacytoma in my sacrum with lots of bone destruction. I did have a tiny kappa M-spike at diagnosis, but it was tiny. Certainly not in proportion to the amount of bone findings I had. Oddly, I've also always had normal bone marrow biopsies – not even a clone has ever been found on seven different biopsies.
So it's true that the only way to track disease is with imaging. This makes it very tricky. It's A LOT of radiation, but that's balanced against needing to know when relapses happen. Also, the measurement of disease is much fuzzier with images than with light chain levels and m-spikes.
Also, not having labs to measure and track excludes us from most clinical trials!!
My myeloma is nonsecretory. I've never had an abnormal serum light chain level, even while having several bone destroying lesions, including a large kappa-restricted plasmacytoma in my sacrum with lots of bone destruction. I did have a tiny kappa M-spike at diagnosis, but it was tiny. Certainly not in proportion to the amount of bone findings I had. Oddly, I've also always had normal bone marrow biopsies – not even a clone has ever been found on seven different biopsies.
So it's true that the only way to track disease is with imaging. This makes it very tricky. It's A LOT of radiation, but that's balanced against needing to know when relapses happen. Also, the measurement of disease is much fuzzier with images than with light chain levels and m-spikes.
Also, not having labs to measure and track excludes us from most clinical trials!!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Relapse 9 months after transplant - now nonsecretory
Thanks for your responses. I've been reading up on this diagnosis, but I was just getting used to my initial diagnosis and what it entailed. As my initial diagnosis was able to be verified through biopsy and blood work, this is a new frontier.
Leave it to me to have a rare form of a rare disease. That seems to be the way my life goes. I am nothing if not unusual.
The disease first showed itself in my jaw last year, with swelling. While I wasn't sure if I was being a hypochondriac, I thought I started to feel it again, and I was right. Because it's in my jaw again (and femur), they are concerned about osteonecrosis of the jaw (ONJ) if they go with radiation. They've suggested chemo again as a result.
Tracy, may I ask if you had chemo or radiation or both?
Leave it to me to have a rare form of a rare disease. That seems to be the way my life goes. I am nothing if not unusual.
The disease first showed itself in my jaw last year, with swelling. While I wasn't sure if I was being a hypochondriac, I thought I started to feel it again, and I was right. Because it's in my jaw again (and femur), they are concerned about osteonecrosis of the jaw (ONJ) if they go with radiation. They've suggested chemo again as a result.
Tracy, may I ask if you had chemo or radiation or both?
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: Relapse 9 months after transplant - now nonsecretory
Ya, rare form of a rare disease; my dad's in the same boat, nonsecretory neoplasms; looks like he will be doing a cyclophosphamide, bortezomib (Velcade), dexamethasone (CyBorD) treatment in the near future.
Before the transplant, what chemo regimen was your first, JinMingDao?
Before the transplant, what chemo regimen was your first, JinMingDao?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Relapse 9 months after transplant - now nonsecretory
I've never had radiation, since my disease has been responsive to chemo.
First I was on bortezomib (Velcade), lenalidomide (Revlimid) and dexamethasone.
Then I relapsed.
So then I was on carfilzomib (Kyrpolis), lenalidomide and dex.
But the carfilzomib damaged my heart and lungs. They are getting better now.
So now I'm on cyclophosphamide (Cytoxan), pomalidomide (Pomalyst) and dex.
First I was on bortezomib (Velcade), lenalidomide (Revlimid) and dexamethasone.
Then I relapsed.
So then I was on carfilzomib (Kyrpolis), lenalidomide and dex.
But the carfilzomib damaged my heart and lungs. They are getting better now.
So now I'm on cyclophosphamide (Cytoxan), pomalidomide (Pomalyst) and dex.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Relapse 9 months after transplant - now nonsecretory
Call me Kim if you like 
. My regimen last year was RVD (Revlimid, Velcade, dexamethasone), with Zometa infusions thrown in monthly. I had an auto stem cell transplant (SCT) in December with Cytoxan and melphalan, I believe. Sometimes details are a bit blurry, honestly.
I'm sorry to hear about your father, Little Monkey. Tracy, thank you for sharing, and I am glad you are feeling a little better. I haven't figured out why my relapse was so quick, but it's at the top of the list of my questions.
Revlimid was a challenge for me, as some of my side effects were more than difficult, especially at work (when I was working). Time to strike the balance again between killing the cancer cells, and managing the cure.
. My regimen last year was RVD (Revlimid, Velcade, dexamethasone), with Zometa infusions thrown in monthly. I had an auto stem cell transplant (SCT) in December with Cytoxan and melphalan, I believe. Sometimes details are a bit blurry, honestly. I'm sorry to hear about your father, Little Monkey. Tracy, thank you for sharing, and I am glad you are feeling a little better. I haven't figured out why my relapse was so quick, but it's at the top of the list of my questions.
Revlimid was a challenge for me, as some of my side effects were more than difficult, especially at work (when I was working). Time to strike the balance again between killing the cancer cells, and managing the cure.
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: Relapse 9 months after transplant - now nonsecretory
Kim, what was your experience when taking Cytoxan to ready you for your auto SCT?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Relapse 9 months after transplant - now nonsecretory
It's a little fuzzy (no pun intended), but my hair started to fall out in strings pretty quickly. They had a hard time collecting my cells, I forget how many times we tried. Other than that, I don't think I started to have GI / memory issues until the melphalan.
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: Relapse 9 months after transplant - now nonsecretory
Hi Kim,
I'm sorry to hear about your relapse. I hope your next treatment regimen works out well and allows you to have a much longer remission.
I thought I would add just a little to what the others already have written here about nonsecretory multiple myeloma. It seems complicated at first, but it's really very simple.
You can think of there being three main "types" of multiple myeloma that requires treatment:
Its just that the monoclonal plasma cells are different between the three types of myeloma in terms of whether or not they produce extra immunoglobulins and/or free light chains.
Among newly diagnosed multiple myeloma patients, about 80-85 percent fall into the first (regular) category, about 15 percent fall into the second (light chain) category, and the rest – just a few percentage points – fall into the nonsecretory category.
In terms of treatment, there really isn't anything to suggest that nonsecretory patients should receive any different form of treatment than secretory patients, or that they respond differently to treatment. However, as others have pointed out, it is more difficult to track how the nonsecretory patients respond to treatment, which is one of the main reasons they traditionally have not been eligible to participate in most clinical trials.
That may change, though. It seems that, the more treatments a patient receives for their disease, the more likely it is that the disease will become nonsecretory. So, because there are now more treatments for the disease, and patients are getting more and more of these treatments, you are seeing more myeloma patients with nonsecretory disease. Companies running clinical trials therefore have more and more of an incentive to figure out ways to include nonsecretory patients in their trials.
The bottom line is that nonsecretory multiple myeloma isn't quantum physics. It just sounds complicated!
Cheers!
I'm sorry to hear about your relapse. I hope your next treatment regimen works out well and allows you to have a much longer remission.
I thought I would add just a little to what the others already have written here about nonsecretory multiple myeloma. It seems complicated at first, but it's really very simple.
You can think of there being three main "types" of multiple myeloma that requires treatment:
- "Regular" multiple myeloma - Untreated patients have above-normal levels of both an immunoglobulin (IgA, IgG, etc.) and a free light chain (kappa or lambda).
- Light chain multiple myeloma - Untreated patients have regular, or below-normal, levels of all immunoglobulins, but they have above normal levels of a free light chain
- Nonsecretory multiple myeloma - Untreated patients have regular, or below-normal, levels of all immunoglobulins and free light chains.
Its just that the monoclonal plasma cells are different between the three types of myeloma in terms of whether or not they produce extra immunoglobulins and/or free light chains.
Among newly diagnosed multiple myeloma patients, about 80-85 percent fall into the first (regular) category, about 15 percent fall into the second (light chain) category, and the rest – just a few percentage points – fall into the nonsecretory category.
In terms of treatment, there really isn't anything to suggest that nonsecretory patients should receive any different form of treatment than secretory patients, or that they respond differently to treatment. However, as others have pointed out, it is more difficult to track how the nonsecretory patients respond to treatment, which is one of the main reasons they traditionally have not been eligible to participate in most clinical trials.
That may change, though. It seems that, the more treatments a patient receives for their disease, the more likely it is that the disease will become nonsecretory. So, because there are now more treatments for the disease, and patients are getting more and more of these treatments, you are seeing more myeloma patients with nonsecretory disease. Companies running clinical trials therefore have more and more of an incentive to figure out ways to include nonsecretory patients in their trials.
The bottom line is that nonsecretory multiple myeloma isn't quantum physics. It just sounds complicated!
Cheers!
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