Hi All,
I have had a successful stem cell infusion for IgA multiple myeloma 8 weeks ago after smoldering for many years. I am in complete remission (CR).
My lack of understanding relates to the inevitable rise in paraprotein levels in the blood after a period of remission.
Is CR equivalent to smoldering myeloma? If not, what are the differences?
Can the body's immune system keep the disease in check for a period, or is it just potluck as to when paraprotein levels start to rise again?
Best wishes to all forum readers,
Glen Shepherd (Oz)
Forums
8 posts
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shep - Name: Shep
- Who do you know with myeloma?: me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 63
Re: Is a complete response the same as smoldering myeloma?
Hello Oz,
There are studies that come up with average numbers on populations. There is no way of knowing for sure ahead of time whether or not you will be at the average, above, or below.
There are a couple of risk factors, though. Have you had the cytogenetic analysis done under the FISH test? You should know if you are in the "standard" risk class, or the intermediate to high risk class.
That being said, off the top of my head, the average amount of time of remission for someone at CR or very good partial response (VGPR) is something in the range of 42 months, without maintenance, and something like 66 months with maintenance. By maintenance, I mean a low dose of Revlimid (say 10 mg).
The current thinking is that in the standard-risk case, doctors are leaning towards maintenance, though it might not be needed in all cases, but in the higher-risk classes, maintenance would almost always be used.
The recent good news is that with newer and better drugs, you have a decent chance to have the second remission as long as the first, where historically, subsequent remissions have generally been shorter.
Good luck to you.
There are studies that come up with average numbers on populations. There is no way of knowing for sure ahead of time whether or not you will be at the average, above, or below.
There are a couple of risk factors, though. Have you had the cytogenetic analysis done under the FISH test? You should know if you are in the "standard" risk class, or the intermediate to high risk class.
That being said, off the top of my head, the average amount of time of remission for someone at CR or very good partial response (VGPR) is something in the range of 42 months, without maintenance, and something like 66 months with maintenance. By maintenance, I mean a low dose of Revlimid (say 10 mg).
The current thinking is that in the standard-risk case, doctors are leaning towards maintenance, though it might not be needed in all cases, but in the higher-risk classes, maintenance would almost always be used.
The recent good news is that with newer and better drugs, you have a decent chance to have the second remission as long as the first, where historically, subsequent remissions have generally been shorter.
Good luck to you.
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JPC - Name: JPC
Re: Is a complete response the same as smoldering myeloma?
Hi JPC,
Thanks for response. I am low risk on the FISH scale (sorry for the pun). I have no mutations to DNA.
My query was more about the actual difference between smoldering myeloma, multiple myeloma, and CR myeloma in terms of the cancer cells. How are they kept in check?
Many thanks, shep
Thanks for response. I am low risk on the FISH scale (sorry for the pun). I have no mutations to DNA.
My query was more about the actual difference between smoldering myeloma, multiple myeloma, and CR myeloma in terms of the cancer cells. How are they kept in check?
Many thanks, shep
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shep - Name: Shep
- Who do you know with myeloma?: me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 63
Re: Is a complete response the same as smoldering myeloma?
Shep,
If I understand you correctly, I think you are asking what the differences are in the risk of progression from smoldering multiple myeloma to active multiple myeloma versus the risk of progression from remission (based on a CR) to relapse?
If I understand you correctly, I think you are asking what the differences are in the risk of progression from smoldering multiple myeloma to active multiple myeloma versus the risk of progression from remission (based on a CR) to relapse?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is a complete response the same as smoldering myeloma?
Another question for you, Shep. The stem cell transplant you had ... Did you receive an infusion of your own stem cells, which you had harvested earlier, or were the stem cells from someone else?
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JimNY
Re: Is a complete response the same as smoldering myeloma?
Hi all,
I had my own stem cells. They harvested 20 million and infused 10 million.
I'll rephrase my question. I had a paraprotein level of 32 and was smoldering. The level jumped to 43 and I was considered cancerous. I then commenced chemo and had a stem cell transplant. Now I'm in complete remission.
What is the difference in the cancer cells in these 3 stages and in CR? What factors govern the return of the cancer cells to a level where further intervention is necessary to limit damage?
Best wishes, shep
I had my own stem cells. They harvested 20 million and infused 10 million.
I'll rephrase my question. I had a paraprotein level of 32 and was smoldering. The level jumped to 43 and I was considered cancerous. I then commenced chemo and had a stem cell transplant. Now I'm in complete remission.
What is the difference in the cancer cells in these 3 stages and in CR? What factors govern the return of the cancer cells to a level where further intervention is necessary to limit damage?
Best wishes, shep
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shep - Name: Shep
- Who do you know with myeloma?: me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 63
Re: Is a complete response the same as smoldering myeloma?
Hello again, Oz:
You ask a very direct question. Multiple myeloma, however, is not a straightforward condition like the flu or the measles, and has a lot of complexity to it, it varies wildly from patient to patient, and over time it evolves. With MGUS or smoldering, many people have a very slow progression, and never get to active multiple myeloma where its causing bad symptoms. I do not know if any of the cells are different at those stages or not. However, it does seem that the body's own immune system keeps it at bay. Once it becomes active, it moves much faster. Some researchers state that multiple myeloma cells actually shut off the body's immune system.
Once you reach the multiple myeloma stage, and you get it under control, it almost always comes back, even if you reach a CR. Aggressive disease comes back fast, but most people can go in the range of 2.5 to 5 years before it comes back the first time. One exception is that sometimes an allogeneic (donor) stem cell transplant does seem to "cure" the condition, as the new immune system can kill off the remaining cells. At this stage, you should research the concept of maintenance, for instance with Revlimid. Not everyone thinks it's a good idea, but it does potentially extend the period of first remission by over a year (on average).
You ask a very direct question. Multiple myeloma, however, is not a straightforward condition like the flu or the measles, and has a lot of complexity to it, it varies wildly from patient to patient, and over time it evolves. With MGUS or smoldering, many people have a very slow progression, and never get to active multiple myeloma where its causing bad symptoms. I do not know if any of the cells are different at those stages or not. However, it does seem that the body's own immune system keeps it at bay. Once it becomes active, it moves much faster. Some researchers state that multiple myeloma cells actually shut off the body's immune system.
Once you reach the multiple myeloma stage, and you get it under control, it almost always comes back, even if you reach a CR. Aggressive disease comes back fast, but most people can go in the range of 2.5 to 5 years before it comes back the first time. One exception is that sometimes an allogeneic (donor) stem cell transplant does seem to "cure" the condition, as the new immune system can kill off the remaining cells. At this stage, you should research the concept of maintenance, for instance with Revlimid. Not everyone thinks it's a good idea, but it does potentially extend the period of first remission by over a year (on average).
Last edited by JPC on Fri Mar 11, 2016 7:38 am, edited 1 time in total.
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JPC - Name: JPC
Re: Is a complete response the same as smoldering myeloma?
Thanks JPC. Your answer gives me a better idea.
Best wishes,
shep
Best wishes,
shep
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shep - Name: Shep
- Who do you know with myeloma?: me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 63
8 posts
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