Hi.
Today I saw a different doctor and was told for the first time that, as my paraprotein was 53 g/l (5.3 g/dL) at diagnosis back in April, that it can indicate that my multiple myeloma is aggressive.
I'm still waiting on a FISH test (been ages). None of the other doctors had told me this before. I'm a IgA multiple myeloma.
Has anyone else been diagnosed with a very high M-spike (paraprotein level) and been told the same?
Thanks
Forums
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: High M-spike (paraprotein level) at diagnosis
Hello Dean.
My husband's M-spike was 7.3 g/dL (73 g/l) at diagnosis, and no one told us that this indicated his myeloma was an aggressive type. I don't know that it's not true, just that no one indicated that to us.
He was also anemic, and had severe bone involvement – innumerable lesions was how they phrased it – plus his kidneys were compromised. All said, things weren't looking good.
He had an autologous stem cell transplant in the spring of 2015 and remains in complete response now. Other than monthly blood tests and the side effects (definitely manageable) of his maintenance meds, life has pretty much returned to normal. I hope the same for you.
My husband's M-spike was 7.3 g/dL (73 g/l) at diagnosis, and no one told us that this indicated his myeloma was an aggressive type. I don't know that it's not true, just that no one indicated that to us.
He was also anemic, and had severe bone involvement – innumerable lesions was how they phrased it – plus his kidneys were compromised. All said, things weren't looking good.
He had an autologous stem cell transplant in the spring of 2015 and remains in complete response now. Other than monthly blood tests and the side effects (definitely manageable) of his maintenance meds, life has pretty much returned to normal. I hope the same for you.
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reece93 - Name: reece93
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 2014
- Age at diagnosis: 57
Re: High M-spike (paraprotein level) at diagnosis
Hi Dean,
I was diagnosed with myeloma when my paraprotein level (M-spike) was 40 g/L (4 g/dL). This level did not seem to worry my hematologist. However, she did emphasize that my cytogenetic report indicated that I have the chromosomal abnormality t(4;14). The t(4;14) abnormality is associated with poor overall survival and short remission times. She said this is “worrisome.”
The results of your FISH analysis will give you important information on the status of your myeloma. Let’s hope your myeloma is not as aggressive as your doctor currently thinks.
Good luck.
Joe
I was diagnosed with myeloma when my paraprotein level (M-spike) was 40 g/L (4 g/dL). This level did not seem to worry my hematologist. However, she did emphasize that my cytogenetic report indicated that I have the chromosomal abnormality t(4;14). The t(4;14) abnormality is associated with poor overall survival and short remission times. She said this is “worrisome.”
The results of your FISH analysis will give you important information on the status of your myeloma. Let’s hope your myeloma is not as aggressive as your doctor currently thinks.
Good luck.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: High M-spike (paraprotein level) at diagnosis
I was 5.9 g/dL (59 g/l) and no one said that it indicated, in and of itself, aggressive disease.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: High M-spike (paraprotein level) at diagnosis
Hi Dean,
My monoclonal protein was 58 g/l (5.8 g/dL) and I was actually told that I may have had 'slow growing myeloma'. This was because I had vertebral fractures and lots of lytic lesions. My transplant doctor thought I must have had myeloma for quite a while before being diagnosed. After seven years since diagnosis, maybe it is slow growing ... I sure hope so! So perhaps your monoclonal protein had been accumulating for quite some time.
My monoclonal protein was 58 g/l (5.8 g/dL) and I was actually told that I may have had 'slow growing myeloma'. This was because I had vertebral fractures and lots of lytic lesions. My transplant doctor thought I must have had myeloma for quite a while before being diagnosed. After seven years since diagnosis, maybe it is slow growing ... I sure hope so! So perhaps your monoclonal protein had been accumulating for quite some time.
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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: High M-spike (paraprotein level) at diagnosis
Hi Dean,
One possible reason for what your doctor said is that the old Durie-Salmon staging system for multiple myeloma used a patient's M-spike as one of the criteria for determining a patient's disease stage.
In particular, for patients with IgA multiple myeloma, an M-spike greater than 5 g/dl (50 g/dl) automatically put the patient into the highest stage (stage 3) in the Durie-Salmon system.
For patient's with IgG myeloma, a patient had to have an M-spike greater than 7 g/dl (70 g/dL) to automatically be classified as stage 3.
Statistically, patients with higher stage disease at diagnosis tend to have somewhat shorter overall survival. So it's possible your doctor used this fact, and the criteria from the Durie-Salmon staging system, as the basis for saying that a higher M-spike is associated with more aggressive disease.
In case you're interested, the Durie-Salmon system and the International Staging System (ISS) are summarized here:
https://en.wikipedia.org/wiki/Multiple_myeloma#Staging
Neither the ISS nor the Revised ISS (R-ISS) use a patient's M-spike as the basis for determining a patient's disease stage at diagnosis. The R-ISS is described in this recent journal article:
Palumbo, A, et al, "Revised International Staging System for Multiple Myeloma: A Report From International Myeloma Working Group," Journal of Clinical Oncology, August 3, 2015 (full text of article)
One possible reason for what your doctor said is that the old Durie-Salmon staging system for multiple myeloma used a patient's M-spike as one of the criteria for determining a patient's disease stage.
In particular, for patients with IgA multiple myeloma, an M-spike greater than 5 g/dl (50 g/dl) automatically put the patient into the highest stage (stage 3) in the Durie-Salmon system.
For patient's with IgG myeloma, a patient had to have an M-spike greater than 7 g/dl (70 g/dL) to automatically be classified as stage 3.
Statistically, patients with higher stage disease at diagnosis tend to have somewhat shorter overall survival. So it's possible your doctor used this fact, and the criteria from the Durie-Salmon staging system, as the basis for saying that a higher M-spike is associated with more aggressive disease.
In case you're interested, the Durie-Salmon system and the International Staging System (ISS) are summarized here:
https://en.wikipedia.org/wiki/Multiple_myeloma#Staging
Neither the ISS nor the Revised ISS (R-ISS) use a patient's M-spike as the basis for determining a patient's disease stage at diagnosis. The R-ISS is described in this recent journal article:
Palumbo, A, et al, "Revised International Staging System for Multiple Myeloma: A Report From International Myeloma Working Group," Journal of Clinical Oncology, August 3, 2015 (full text of article)
Re: High M-spike (paraprotein level) at diagnosis
Hello Dean:
Although I do not recall anyone saying a high M-spike automatically means "aggressive", I do recall one of the doctors pointing out that at initial diagnosis (after many years MGUS and smoldering) that my wife was stage 3 due to the fact that her M-spike shot up quickly to 7.0 g/dl (70 g/l) and she had anemia (hemoglobin below 10). As mentioned by Terry, there is correlation between stage and response/outcomes, but it's not perfect. Certain other factors such as good health, and limited CRAB symptoms that go away quickly, will mitigate the higher stage.
I do definitely recall, however, that the literature shows that its somewhat harder to reach a complete response (CR) on treatment when starting with a higher M-spike. Again, it's not a perfect correlation, you could be a "responder" with a strong response, but in terms of a gross generalization, its generally true. So even if the high M-spike does not mean more aggressive disease, it could possibly mean that more treatment or more aggressive treatment may be needed to reach CR.
Also, I think most doctors would take the bone marrow plasma percentage as being more fundamental. My wife was at 80%+, which was quite high.
She reached a very good partial response (VGPR) on initial induction therapy, then got a little better VGPR on the autologous stem cell transplant (ASCT), and did get a complete response on post-transplant consolidation. We thought it was important to reach the complete response, as she had t(4;14), as mentioned also by Wobbles.
Good luck.
Although I do not recall anyone saying a high M-spike automatically means "aggressive", I do recall one of the doctors pointing out that at initial diagnosis (after many years MGUS and smoldering) that my wife was stage 3 due to the fact that her M-spike shot up quickly to 7.0 g/dl (70 g/l) and she had anemia (hemoglobin below 10). As mentioned by Terry, there is correlation between stage and response/outcomes, but it's not perfect. Certain other factors such as good health, and limited CRAB symptoms that go away quickly, will mitigate the higher stage.
I do definitely recall, however, that the literature shows that its somewhat harder to reach a complete response (CR) on treatment when starting with a higher M-spike. Again, it's not a perfect correlation, you could be a "responder" with a strong response, but in terms of a gross generalization, its generally true. So even if the high M-spike does not mean more aggressive disease, it could possibly mean that more treatment or more aggressive treatment may be needed to reach CR.
Also, I think most doctors would take the bone marrow plasma percentage as being more fundamental. My wife was at 80%+, which was quite high.
She reached a very good partial response (VGPR) on initial induction therapy, then got a little better VGPR on the autologous stem cell transplant (ASCT), and did get a complete response on post-transplant consolidation. We thought it was important to reach the complete response, as she had t(4;14), as mentioned also by Wobbles.
Good luck.
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JPC - Name: JPC
Re: High M-spike (paraprotein level) at diagnosis
I'll add my experience.
When I was diagnosed, my M spike was 97 g/l (9.7 g/dl)! I had something called hyperviscosity (thick blood) from such a high protein level. My doctor said this indicated that I had multiple myeloma undiagnosed for a long time. I had been not right for two years, saw many doctors, but multiple myeloma was not on the table due to my being 30 years old. I was not told it was aggressive, just that it was more advanced.
I was diagnosed in 2010. I responded well to treatment after the first round of treatment. My M spike dropped in half, then in half again in the next round. I am still doing well, though I am looking at more treatment sooner rather than later, as my M-spike is creeping up again. It's about 25 g/l, or 2.5 g/dl, at the moment.
When I was diagnosed, my M spike was 97 g/l (9.7 g/dl)! I had something called hyperviscosity (thick blood) from such a high protein level. My doctor said this indicated that I had multiple myeloma undiagnosed for a long time. I had been not right for two years, saw many doctors, but multiple myeloma was not on the table due to my being 30 years old. I was not told it was aggressive, just that it was more advanced.
I was diagnosed in 2010. I responded well to treatment after the first round of treatment. My M spike dropped in half, then in half again in the next round. I am still doing well, though I am looking at more treatment sooner rather than later, as my M-spike is creeping up again. It's about 25 g/l, or 2.5 g/dl, at the moment.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: High M-spike (paraprotein level) at diagnosis
Thank you everyone for your replies. They've been a great help
TerryH - Thanks again for your info and the link. Like when I was first diagnosed, you and JPC were a great help.
JPC - Glad to hear that your wife is doing well and she's in complete remission (CR). Your info has always been a great help to me. Fortunately, I got to CR on my 4th cycle of treatment and my recent bone marrow biopsy has confirmed it. I just hope my paraproteins don't shoot up too fast as I'm due to have my stem cells harvested in 7 days. My first bone marrow biopsy showed over 70% myeloma, but they didn't do a FISH test. My last biopsy I asked for the FISH test and nearly 5 weeks later we are still waiting for results. Got a feeling it's been unsuccessful, maybe due to the myeloma being killed off? Also, doctor told me IgA myeloma is rare (not sure what he meant by that). My stem cell transplant is in November, so fingers crossed it works and 2017 will be a better year. All the best.
Iys2012 - Sorry to hear your M-spike is going up. Like you, I've had multiple myeloma for a while. My GP told me that I had a blood test 2 years before I was diagnosed and it showed I was anemic, but it wasn't picked up by the other doctor. Are you IgA? I was told that, as I'm IgA, your blood gets thicker. Your little boy looks cute. I'm hoping in 2017 I can get back to normal with my 2 daughters after my stem cell transplant next month.
TerryH - Thanks again for your info and the link. Like when I was first diagnosed, you and JPC were a great help.
JPC - Glad to hear that your wife is doing well and she's in complete remission (CR). Your info has always been a great help to me. Fortunately, I got to CR on my 4th cycle of treatment and my recent bone marrow biopsy has confirmed it. I just hope my paraproteins don't shoot up too fast as I'm due to have my stem cells harvested in 7 days. My first bone marrow biopsy showed over 70% myeloma, but they didn't do a FISH test. My last biopsy I asked for the FISH test and nearly 5 weeks later we are still waiting for results. Got a feeling it's been unsuccessful, maybe due to the myeloma being killed off? Also, doctor told me IgA myeloma is rare (not sure what he meant by that). My stem cell transplant is in November, so fingers crossed it works and 2017 will be a better year. All the best.
Iys2012 - Sorry to hear your M-spike is going up. Like you, I've had multiple myeloma for a while. My GP told me that I had a blood test 2 years before I was diagnosed and it showed I was anemic, but it wasn't picked up by the other doctor. Are you IgA? I was told that, as I'm IgA, your blood gets thicker. Your little boy looks cute. I'm hoping in 2017 I can get back to normal with my 2 daughters after my stem cell transplant next month.
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: High M-spike (paraprotein level) at diagnosis
Hello Dean:
The FISH test is a funny thing in that you need a lot of multiple myeloma cells to get a valid measurement. Other forum participants have reported that the initial sample got messed up, and later samples would not work because the multiple myeloma was knocked down with induction treatment. The boat may have sailed on that one for you, as you (fortunately) got a complete response at initial induction.
I would suggest, however, that you speak with your medical team, and get the test for minimum residual disease (MRD) according to the latest IMWG standards. In Europe, most labs can find one bad cell in one hundred thousand plasma cells. I understand that Spain can do a little bit better, getting one in a million.
If you are minimal residual disease negative, then no disease can be detected by the best available measurements. That is a good thing. It may be there still. But it will probably take a while for it to rear its ugly head. MRD negative suggests that you may be good for now in terms of treatment. MRD positive, in some cases, suggests possibly more treatment, which in your case might be consolidation.
Alyssa: Thank you for the update. I wish it were somewhat better, and the marker was not creeping up, but you have been such a warrior so far, and I have a good a vision for your future battles, I hope your team can get you on the best new drugs that get you a better response than the initial response. God Bless you and your family.
The FISH test is a funny thing in that you need a lot of multiple myeloma cells to get a valid measurement. Other forum participants have reported that the initial sample got messed up, and later samples would not work because the multiple myeloma was knocked down with induction treatment. The boat may have sailed on that one for you, as you (fortunately) got a complete response at initial induction.
I would suggest, however, that you speak with your medical team, and get the test for minimum residual disease (MRD) according to the latest IMWG standards. In Europe, most labs can find one bad cell in one hundred thousand plasma cells. I understand that Spain can do a little bit better, getting one in a million.
If you are minimal residual disease negative, then no disease can be detected by the best available measurements. That is a good thing. It may be there still. But it will probably take a while for it to rear its ugly head. MRD negative suggests that you may be good for now in terms of treatment. MRD positive, in some cases, suggests possibly more treatment, which in your case might be consolidation.
Alyssa: Thank you for the update. I wish it were somewhat better, and the marker was not creeping up, but you have been such a warrior so far, and I have a good a vision for your future battles, I hope your team can get you on the best new drugs that get you a better response than the initial response. God Bless you and your family.
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JPC - Name: JPC
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