Hi Folks,
I'm posting here by way of being informative, as folks here seem to be very well informed and interested in detail. I'm based in the UK.
I was diagnosed in October 2016 with IgG kappa multiple myeloma and after initial therapy of cyclophosphamide, thalidomide, and dexamethasone (CTD), I achieved complete remission.
Just before Christmas 2018, I started to suffer increased rib pain. After an x-ray and an MRI scan, I was found to have a new lesion on a rib. This triggered a PET scan to see if there were any other lesions.
On Monday, while attending a pre-radiotherapy consult, I saw the PET scan and I'm riddled with lesions, about 20 by the quick look I had. I'm also now having severe pain in ribs on the other side, so that's getting radiated at the same time as the first rib that was painful. That took place on Friday this week.
The main point of my posting is this: Throughout my remission, my bloods kept getting better and better, the M-spike originally undetectable, and in the last two tests, detectable but not measurable. The latest bloods were the best I've had for years.
It appears then that I've had a symptomatic relapse, with bone involvement in multiple places, and it would seem that the myeloma is now nonsecretory or oligosecretory.
Since my first treatment I've been left with cognitive impairment, such that I have no internal dialogue and virtually no memory, long or short.
A plus to this is that I'm unable to ponder or worry about having multiple myeloma or relapsing. I literally live in the moment. My quality of life would be intolerable for many people, but for me, it's fine. My quality of life comes from seeing my grandchildren regularly and from interacting with my family.
It's my family I feel for. It's they who are doing the caring and worrying. I think my cancer affects them far more than me, apart from physically, of course.
On a lighter note, my banjo piece is on track to be ready for about the end of February. I hope I can complete the project before my banjo gets too heavy for me, which is getting close.
Forums
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Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: Symptomatic (nonsecretory / oligosecretory) relapse
Taff,
Thank you for submitting this most interesting post!
I find it quite unsettling to see that you could have so many lesions despite good "numbers." Now I will want periodic skeletal scans to catch lesions before they proliferate!
Your positive outlook under these circumstances is praiseworthy. I will be following your progress!
Thank you for submitting this most interesting post!
I find it quite unsettling to see that you could have so many lesions despite good "numbers." Now I will want periodic skeletal scans to catch lesions before they proliferate!
Your positive outlook under these circumstances is praiseworthy. I will be following your progress!
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: Symptomatic (nonsecretory / oligosecretory) relapse
Hi All,
My relapse was confirmed today as a symptomatic oligosecretory relapse. I start VCD (Velcade, cyclophosphamide, and dexamethasone) next Wednesday. I will undergo 6 to 9 5-week cycles of the regimen, as well as various anti-nausea and prophylatic medications. I'll be monitored by PET/CT scans.
I did get offered an alternative regimen based on Kyprolis (carfilzomib), but that seemed a bit more oppressive to me. Our health guidelines mean that I'll not be eligible for this after taking Velcade, but I'm content with my decision.
My best to All
Taff
My relapse was confirmed today as a symptomatic oligosecretory relapse. I start VCD (Velcade, cyclophosphamide, and dexamethasone) next Wednesday. I will undergo 6 to 9 5-week cycles of the regimen, as well as various anti-nausea and prophylatic medications. I'll be monitored by PET/CT scans.
I did get offered an alternative regimen based on Kyprolis (carfilzomib), but that seemed a bit more oppressive to me. Our health guidelines mean that I'll not be eligible for this after taking Velcade, but I'm content with my decision.
My best to All
Taff
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Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: Symptomatic (nonsecretory / oligosecretory) relapse
Taff,
It is not unusual for some patients that showed the classic M-spike initially to become nonsecretory or light chain only later, but most patients start out that way. As a way of example, when I was diagnosed some 10 years ago, I did not have a classic M-spike, and my standard tests showed me as IgG kappa, detectable but not measurable. However I had a few lesions on my hip crest and right femur and was ultimately diagnosed as Stage 2. The test that is most closely looked at for this group is the serum free light chain assay. That test is what my oncologist uses to track my multiple myeloma progress. At the time of my diagnosis, that test showed my kappa free light chain level was significantly elevated and the ratio was well above normal, even though I had no M spike. You did not mention the types of tests they were running to track your myeloma's progress.
In rare circumstances, even the serum free light chain test does not detect changes, so bone marrow biopsies and PET scans must be relied upon.
Have your treating physicians done the serum free light chain testing as part of your regular tests?
It is not unusual for some patients that showed the classic M-spike initially to become nonsecretory or light chain only later, but most patients start out that way. As a way of example, when I was diagnosed some 10 years ago, I did not have a classic M-spike, and my standard tests showed me as IgG kappa, detectable but not measurable. However I had a few lesions on my hip crest and right femur and was ultimately diagnosed as Stage 2. The test that is most closely looked at for this group is the serum free light chain assay. That test is what my oncologist uses to track my multiple myeloma progress. At the time of my diagnosis, that test showed my kappa free light chain level was significantly elevated and the ratio was well above normal, even though I had no M spike. You did not mention the types of tests they were running to track your myeloma's progress.
In rare circumstances, even the serum free light chain test does not detect changes, so bone marrow biopsies and PET scans must be relied upon.
Have your treating physicians done the serum free light chain testing as part of your regular tests?
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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: Symptomatic (nonsecretory / oligosecretory) relapse
Hi Ron,
I've read quite a lot of posts here about oligosecretory and nonscretory multiple myeloma as well as other stuff across the net and realise it's just evolved in my case. Or more likely I also had the oligosecretory strain at diagnosis as well and it's this strain that was most resistant to initial treatment and thus caused the relapse.
While in remission my multiple myeloma progress was monitored by bloods; monthly before bisphosphonate infusion and 3-monthly before a haematology consult. Initially the paraprotein was undetectable and for the last two sets of results was detectable but unmeasurable. Possibly the start of the relapse although nobody realised. I had suspicions but was always told, 'You're ok, your bloods are fine'.
I've had a bone marrow biopsy recently and that showed very little. It appears it's all in my bones so, as mentioned above, my multiple myeloma is going to be monitored by PET/CT scans.
I'm quite disabled with it all and I've several comorbidities. I've been ill for many years. I suspect my quality of life would be abominable for all you cycling go-getters here but I'm more than content with my life.
And that's about all I can come up with to say at the moment. The stream of consciousness doesn't seem to be very forthcoming this morning.
My Best to All
Taff
I've read quite a lot of posts here about oligosecretory and nonscretory multiple myeloma as well as other stuff across the net and realise it's just evolved in my case. Or more likely I also had the oligosecretory strain at diagnosis as well and it's this strain that was most resistant to initial treatment and thus caused the relapse.
While in remission my multiple myeloma progress was monitored by bloods; monthly before bisphosphonate infusion and 3-monthly before a haematology consult. Initially the paraprotein was undetectable and for the last two sets of results was detectable but unmeasurable. Possibly the start of the relapse although nobody realised. I had suspicions but was always told, 'You're ok, your bloods are fine'.
I've had a bone marrow biopsy recently and that showed very little. It appears it's all in my bones so, as mentioned above, my multiple myeloma is going to be monitored by PET/CT scans.
I'm quite disabled with it all and I've several comorbidities. I've been ill for many years. I suspect my quality of life would be abominable for all you cycling go-getters here but I'm more than content with my life.
And that's about all I can come up with to say at the moment. The stream of consciousness doesn't seem to be very forthcoming this morning.
My Best to All
Taff
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Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: Symptomatic (nonsecretory / oligosecretory) relapse
Taff,
Thanks for your response, but it still did not address whether or not your blood work includes the serum free light chain assay. That test checks for free light chains that are released by the bone marrow into the bloodstream. It does not measure the paraproteins like the SPEP test. It is more sensitive. Here is more information on it in the Beacon that you may find of interest. I suggest you discuss this test with your oncologist. Since it is a simple blood test it is far less intrusive than bone marrow biopsies and PET scans.
Good luck!
Thanks for your response, but it still did not address whether or not your blood work includes the serum free light chain assay. That test checks for free light chains that are released by the bone marrow into the bloodstream. It does not measure the paraproteins like the SPEP test. It is more sensitive. Here is more information on it in the Beacon that you may find of interest. I suggest you discuss this test with your oncologist. Since it is a simple blood test it is far less intrusive than bone marrow biopsies and PET scans.
Good luck!
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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: Symptomatic (nonsecretory / oligosecretory) relapse
Hi Ron,
I will have been tested for light chains, but I don't know what the result is. We didn't go into blood test results or bone marrow biopsy results, though I got the impression that nothing much could be gleaned from them. I also forgot to ask about my hemoglobin level that I've been monitoring since diagnosis.
Now you've made a point of it, it's something I'll ring up about on Monday, so thanks for that.
For me, the main thing about my consult was confirmation of what I thought, that I'd had an oligosecretory relapse, what treatment I'd be on, and when would it start. I should have got the full results so I'd something to compare with as I go along.
I'll report back when I've rung my nurse.
I will have been tested for light chains, but I don't know what the result is. We didn't go into blood test results or bone marrow biopsy results, though I got the impression that nothing much could be gleaned from them. I also forgot to ask about my hemoglobin level that I've been monitoring since diagnosis.
Now you've made a point of it, it's something I'll ring up about on Monday, so thanks for that.
For me, the main thing about my consult was confirmation of what I thought, that I'd had an oligosecretory relapse, what treatment I'd be on, and when would it start. I should have got the full results so I'd something to compare with as I go along.
I'll report back when I've rung my nurse.
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Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: Symptomatic (nonsecretory / oligosecretory) relapse
Hello Taff,
As well as calling the oncology nurse, you could ask that you have paper printouts of your lab and procedural results at each appointment with the oncologist. I do that and so do lots of other patients who do not have the tests available online. So then you can keep them in a file and refer to them over time too!
The serum free light chain tests are for the kappa, lambda, and the ratio of kappa/lambda free light chains in the blood. The other blood tests check for kidney function, anemia, excess calcium in the blood, the cells that provide immunity and more. They would all be listed on a printout.
Hope that helps!
As well as calling the oncology nurse, you could ask that you have paper printouts of your lab and procedural results at each appointment with the oncologist. I do that and so do lots of other patients who do not have the tests available online. So then you can keep them in a file and refer to them over time too!
The serum free light chain tests are for the kappa, lambda, and the ratio of kappa/lambda free light chains in the blood. The other blood tests check for kidney function, anemia, excess calcium in the blood, the cells that provide immunity and more. They would all be listed on a printout.
Hope that helps!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Symptomatic (nonsecretory / oligosecretory) relapse
Hi Nancy,
When I was getting monthly bisphosphonate infusions, I always had my bloods done a week before and got an immediate printout of most of the results. Not sure if free light chains were checked monthly, but if they were, that was one of the results that wasn't immediately available and as a result, I've not monitored my light chain results over time. I think I'll make a point of it in the future.
Thanks for your input,
Taff
When I was getting monthly bisphosphonate infusions, I always had my bloods done a week before and got an immediate printout of most of the results. Not sure if free light chains were checked monthly, but if they were, that was one of the results that wasn't immediately available and as a result, I've not monitored my light chain results over time. I think I'll make a point of it in the future.
Thanks for your input,
Taff
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Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: Symptomatic (nonsecretory / oligosecretory) relapse
My printouts, labelled 'Flow Sheets,' are quite thorough in that they go back about five months with results. So you can readily see changes in any blood test. So maybe your printouts will be like that too!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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