I haven't been around for awhile. The last time I was around I had just ended Revlimid maintenance after 2 years post 2011 autologous stem cell transplant. My M spike numbers were holding fine at 2 g/L (0.2 g/dL).
Now my M-spike is creeping up to 5 g/L (0.5 g/dL) and the oncologist is saying it is ok to 7 g/dL (0.7 g/dL).
The new problem is my kappa free light chain numbers are climbing. They are at 100 and I'm going back on some form of chemo or drug therapy.
How do my M spikes compare with other folks who had a partial response after their autologous stem cell transplant?
What are the implications of a climbing kappa number?
What is the new immune therapy (failed to write it down, but it is something like IPD?)?
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: M-spike and kappa FLC going up - do they look typical?
Hi Canuck Bob,
Sorry to hear about your relapse, but it sounds like you are being well monitored and hopefully treatments will help you too.
Can't think of what the immune therapy might be. Is it on a clinical trial? If you can find out the name of the treatment, others who have tried it may have some comments for you.
Good luck!
Sorry to hear about your relapse, but it sounds like you are being well monitored and hopefully treatments will help you too.
Can't think of what the immune therapy might be. Is it on a clinical trial? If you can find out the name of the treatment, others who have tried it may have some comments for you.
Good luck!
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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: M-spike and kappa FLC going up - do they look typical?
Good morning, Bob:
I gather that you have been doing well and you have not been following the news/research in the last two or three years. There has been a lot of news in that time and that has translated into some treatment updates for first relapse (where you might be now), as well as all of the stage of multiple myeloma disease course. I gather based on your description, that you are in the range of 5 years or 60 months remission, and you had some maintenance (but not until progression), that you are certainly on the good side of the curve, and you have a good chance of having also a very good period of second remission, and I hope that is the case.
Very generally, if you repeat the same initial induction (whatever that was) and the ASCT, the rule of thumb is that you would get another good response, because it worked the first time, but your duration of remission would be somewhat shorter, say 2/3rds or 3/4ths of the time. There are new better drugs our there now, and with those, you stand a good chance of getting the same length of remission (or very best case even a bit longer).
It is a little hard to run through all the news in one post, and I do not know what your initial induction was, exactly, however, there is a new Imid (Pomalyst (pomalidomide)), two new proteasome inhibitors (Kyprolis (carfizomib) and Ninlaro (ixazomib)). There was a whole new class of drugs approved for multiple myeloma, which are the monoclonal antibodies (Darazlex (daratumumab) and Empliciti (elotuzumab)). There was also something called a HDAC inhibitor, but that is for now kept in reserve for later relapses.
I gather you are in Canada, the above new drugs came through the approval process in the US, but are working their way through the approval process in Canada, the EU, and the rest of the world. If you are interested in a specific new treatment, I am sure that some of our Canadian posters can inform you as to its availability.
Good luck
I gather that you have been doing well and you have not been following the news/research in the last two or three years. There has been a lot of news in that time and that has translated into some treatment updates for first relapse (where you might be now), as well as all of the stage of multiple myeloma disease course. I gather based on your description, that you are in the range of 5 years or 60 months remission, and you had some maintenance (but not until progression), that you are certainly on the good side of the curve, and you have a good chance of having also a very good period of second remission, and I hope that is the case.
Very generally, if you repeat the same initial induction (whatever that was) and the ASCT, the rule of thumb is that you would get another good response, because it worked the first time, but your duration of remission would be somewhat shorter, say 2/3rds or 3/4ths of the time. There are new better drugs our there now, and with those, you stand a good chance of getting the same length of remission (or very best case even a bit longer).
It is a little hard to run through all the news in one post, and I do not know what your initial induction was, exactly, however, there is a new Imid (Pomalyst (pomalidomide)), two new proteasome inhibitors (Kyprolis (carfizomib) and Ninlaro (ixazomib)). There was a whole new class of drugs approved for multiple myeloma, which are the monoclonal antibodies (Darazlex (daratumumab) and Empliciti (elotuzumab)). There was also something called a HDAC inhibitor, but that is for now kept in reserve for later relapses.
I gather you are in Canada, the above new drugs came through the approval process in the US, but are working their way through the approval process in Canada, the EU, and the rest of the world. If you are interested in a specific new treatment, I am sure that some of our Canadian posters can inform you as to its availability.
Good luck
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JPC - Name: JPC
Re: M-spike and kappa FLC going up - do they look typical?
Thanks,
My original diagnosis was stage 1 and the biopsy revealed a treatable form of multiple myeloma. I responded well to Velcade/dex chemo initially and had the stem cell transplant.
The oncologist said at last meeting recently that once the free kappa goes over 100, currently 95, we will do a biopsy to check the disease and sequence it.
The plan is yet to be decided but I am the type to be as aggressive as allowed regardless of side effects. She said that they were very happy with the results of testing new PD-1 (did some research) results with combined Revlimid/dex. Oral therapy works for me but I hated Revlimid as maintenance after the transplant. I work and have teenage daughters.
To be clear I am very positive about things and was under no illusion that this day would not come. For many of us this is the pattern of myeloma at this time. I did relax on staying current and am amazed at the options a few years have added!
My numbers have been on a slow ramp and that does not show any indication of speeding up. A 5 g/L (0.5 g/dL) M-spike is still at the manageable end of the spectrum and early intervention is assured and no hint of kidney or liver problems.
Still it was a shock to face renewed therapy.
I wonder how many such cycles have others endured?
My original diagnosis was stage 1 and the biopsy revealed a treatable form of multiple myeloma. I responded well to Velcade/dex chemo initially and had the stem cell transplant.
The oncologist said at last meeting recently that once the free kappa goes over 100, currently 95, we will do a biopsy to check the disease and sequence it.
The plan is yet to be decided but I am the type to be as aggressive as allowed regardless of side effects. She said that they were very happy with the results of testing new PD-1 (did some research) results with combined Revlimid/dex. Oral therapy works for me but I hated Revlimid as maintenance after the transplant. I work and have teenage daughters.
To be clear I am very positive about things and was under no illusion that this day would not come. For many of us this is the pattern of myeloma at this time. I did relax on staying current and am amazed at the options a few years have added!
My numbers have been on a slow ramp and that does not show any indication of speeding up. A 5 g/L (0.5 g/dL) M-spike is still at the manageable end of the spectrum and early intervention is assured and no hint of kidney or liver problems.
Still it was a shock to face renewed therapy.
I wonder how many such cycles have others endured?
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: M-spike and kappa FLC going up - do they look typical?
Bob,
I think you must be referring to pembrolizumab (aka Keytruda), which is a PD-1 inhibitor. This is the "President Jimmy Carter" drug that made the news a few months back in the USA when he was being treated for brain cancer.
I think you must be referring to pembrolizumab (aka Keytruda), which is a PD-1 inhibitor. This is the "President Jimmy Carter" drug that made the news a few months back in the USA when he was being treated for brain cancer.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: M-spike and kappa FLC going up - do they look typical?
Hello again, Bob:
Multibilly was quick on the uptake and surmised that you may be referring to pembrolizumab. Pembrolizumab is approved for other conditions already, and it's hypothesized that it would also be good for multiple myeloma. It's very early, and not yet established, so you need to do your research, but I am thinking that most people would look at it as a positive opportunity. One other possibility is that it could be the PDL-1 inhibitor, also under clinical trial for multiple myeloma, which is called atezolizumab. Again, both very early, and definitely have some risk based on their "newness".
The funny thing about the situation is that these new agents, monoclonal antibodies, may turn out to be very complementary with existing treatments, enhancing them, or even more active than existing used drugs (see for example the recent cases of daratumumab and elotuzumab). You cannot get daratumumab right now at initial induction or first relapse, off trial (in the US), but it is under trial in both those two settings right now, and is even under trial for smoldering myeloma, where in a certain sense you don't even need it yet. I think that there is a strong argument / justification that daratumumab should be made available to high risk cases at initial induction, however, it is not yet approved right now unless on clinical trial. That is just the way the system works right now.
Good luck with your research. Best regards
Multibilly was quick on the uptake and surmised that you may be referring to pembrolizumab. Pembrolizumab is approved for other conditions already, and it's hypothesized that it would also be good for multiple myeloma. It's very early, and not yet established, so you need to do your research, but I am thinking that most people would look at it as a positive opportunity. One other possibility is that it could be the PDL-1 inhibitor, also under clinical trial for multiple myeloma, which is called atezolizumab. Again, both very early, and definitely have some risk based on their "newness".
The funny thing about the situation is that these new agents, monoclonal antibodies, may turn out to be very complementary with existing treatments, enhancing them, or even more active than existing used drugs (see for example the recent cases of daratumumab and elotuzumab). You cannot get daratumumab right now at initial induction or first relapse, off trial (in the US), but it is under trial in both those two settings right now, and is even under trial for smoldering myeloma, where in a certain sense you don't even need it yet. I think that there is a strong argument / justification that daratumumab should be made available to high risk cases at initial induction, however, it is not yet approved right now unless on clinical trial. That is just the way the system works right now.
Good luck with your research. Best regards
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JPC - Name: JPC
6 posts
• Page 1 of 1