Hi all,
I am currently in sCR (stringent complete response). I had an autologous stem cell transplant in October, 2014. I am currently on maintenance of Velcade sub-q every other week with 12 mg of dex and 5 mg of Revlimid on a 21-day cycle since March, 2015. I am IgA kappa light chain, with chromosome 1 addition.
I am trying to find out if there is anywhere in the New York City area where I could go for minimal residual disease (MRD) testing. I would even pay for it myself, assuming the cost is not astronomical.
Does anyone know where I could get this done or perhaps participate in a trial?
Thanks so much.
Forums
10 posts
• Page 1 of 1
Re: Where can I get minimal residual disease (MRD) testing?
Hi Ellen.
Try Memorial Sloan Kettering. It's a well known hospital in New York. Go to their website and, on the first page, scroll down to "adult cancers," then to multiple myeloma. You can find information on clinical trials for multiple myeloma.
Hopefully this info will help you.
Try Memorial Sloan Kettering. It's a well known hospital in New York. Go to their website and, on the first page, scroll down to "adult cancers," then to multiple myeloma. You can find information on clinical trials for multiple myeloma.
Hopefully this info will help you.
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Amelia - Name: Amelia
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: December 2011
- Age at diagnosis: 52
Re: Where can I get minimal residual disease (MRD) testing?
This topic has been discussed here earlier.
https://myelomabeacon.org/forum/mrd-minimal-residual-disease-testing-questions-t3072.html
That said, Memorial Sloan Kettering (MSK) and Mt Sinai are good places to call. If you are looking in the NYC area, may I assume you had treatment in the NYC area - and your doctors can make some suggestions? But maybe I should not assume that. I am in NYC.
May I ask why you are looking into this?
https://myelomabeacon.org/forum/mrd-minimal-residual-disease-testing-questions-t3072.html
That said, Memorial Sloan Kettering (MSK) and Mt Sinai are good places to call. If you are looking in the NYC area, may I assume you had treatment in the NYC area - and your doctors can make some suggestions? But maybe I should not assume that. I am in NYC.
May I ask why you are looking into this?
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tmcd - Name: TMcD
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 52
Re: Where can I get minimal residual disease (MRD) testing?
Hello Ellen:
Amelia suggested the MSKCC direction to you. You asked what is seemingly a simple/basic question, however, the issue of how to do MRD testing is actually still in development, and the standard for that test is not yet finally settled. However, if you need the test, MSK would be a good place to go, as they are working on finalizing the standard with other experts, nation wide and world wide.
I am not sure how much research you might have been able to do so far, but there are actually different tests. MSK will use "flow cytometry". This is done on the aspirate that is taken in the bone marrow biopsy. The aspirate is the "bloody-like" part that comes out of the bone marrow.
Accordingly, as a first step, please go back to your last BMB, and ask them to give you the full lab report.
Maybe you asked that question already, but I am suggesting to you is that if you did not go over the full report from your latest BMB, that maybe the MRD status report might possibly be there. The concept of MRD negativity is just coming in right now, and from my reading, not all doctors and centers consider it yet, but maybe its buried in the lab report.
If you do not have the info from asking about the old BMB, or you want a new "snapshot", then another BMB would probably be necessary. As Amelia suggested, I would go to one of the "top shelf" centers for the test, as the mid level may not be set up with the latest and the greatest. At MSKCC, I cannot give you a link, but I have heard that there is coming out a trial with new meds to get patients to MRD-, who got close, but could not reach it with standard approaches.
Good luck to you
Amelia suggested the MSKCC direction to you. You asked what is seemingly a simple/basic question, however, the issue of how to do MRD testing is actually still in development, and the standard for that test is not yet finally settled. However, if you need the test, MSK would be a good place to go, as they are working on finalizing the standard with other experts, nation wide and world wide.
I am not sure how much research you might have been able to do so far, but there are actually different tests. MSK will use "flow cytometry". This is done on the aspirate that is taken in the bone marrow biopsy. The aspirate is the "bloody-like" part that comes out of the bone marrow.
Accordingly, as a first step, please go back to your last BMB, and ask them to give you the full lab report.
Maybe you asked that question already, but I am suggesting to you is that if you did not go over the full report from your latest BMB, that maybe the MRD status report might possibly be there. The concept of MRD negativity is just coming in right now, and from my reading, not all doctors and centers consider it yet, but maybe its buried in the lab report.
If you do not have the info from asking about the old BMB, or you want a new "snapshot", then another BMB would probably be necessary. As Amelia suggested, I would go to one of the "top shelf" centers for the test, as the mid level may not be set up with the latest and the greatest. At MSKCC, I cannot give you a link, but I have heard that there is coming out a trial with new meds to get patients to MRD-, who got close, but could not reach it with standard approaches.
Good luck to you
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JPC - Name: JPC
Re: Where can I get minimal residual disease (MRD) testing?
The reason I am looking into the MRD testing is that I am supposedly in SCR yet still have been advised to take a maintenance regimen of modified RVD for a minimumn of 3 years if there is no progression of the myeloma. Obviously if there is that would be a different story.
I am having GI and fatigue side effects so I am questioning whether this full maintenance is warranted. I am not sure i would want to have another BMB but my thinking was that if I could prove I was MRD negative, perhaps i could get some drug free time.
Thanks for responding. I realize this is a "good" problem to have and that I am lucky. I wish the same problem on all of my fellow myeloma patients!!
I am having GI and fatigue side effects so I am questioning whether this full maintenance is warranted. I am not sure i would want to have another BMB but my thinking was that if I could prove I was MRD negative, perhaps i could get some drug free time.
Thanks for responding. I realize this is a "good" problem to have and that I am lucky. I wish the same problem on all of my fellow myeloma patients!!
Re: Where can I get minimal residual disease (MRD) testing?
I have always had the impression that the test for "free light chain" serum proteins was the way to find the lowest detectable amount of MRD for at least active myeloma? If I am wrong, somebody please correct me. Thanks!
Bill S.
Bill S.
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Bill Snyder
Re: Where can I get minimal residual disease (MRD) testing?
Hi Bill,
Although I can understand why you might think that, free light chain (FLC) testing is not the same as minimal residual disease (MRD) testing. It's true that the FLC test is more sensitive than the usual M-spike measurement at picking up whether there are still myeloma cells around, producing monoclonal immunoglobulins and/or free light chains. But it's still not the same thing as MRD testing.
With MRD testing, you are using really, really sensitive techniques to check whether there are myeloma cells in the patient's bone marrow. There are also MRD tests being developed to check for signs of myeloma cells in the circulating blood. But most of the research being done on MRD testing for myeloma is focused on checking for myeloma cells in the bone marrow.
This is different than FLC testing, which doesn't check for myeloma cells, but instead measures parts of the immunoglobulin molecules that are produced by both healthy plasma cells and unhealthy (myeloma) plasma cells. If you have an MRD test done, you want the result to come back "negative", meaning the test showed no signs at all of myeloma cells. With an FLC test, the normal range is still positive, because even healthy people who have never had myeloma produce free light chains.
This article from the Beacon last spring has some useful introductory information about MRD testing that might be helpful for you:
https://myelomabeacon.org/news/2014/04/08/minimal-residual-disease-deep-sequencing-prognosis-multiple-myeloma/
There's also a useful extended discussion of MRD testing in the comments on this Beacon article:
https://myelomabeacon.org/news/2014/07/16/rvd-newly-diagnosed-multiple-myeloma/
Those comments are helpful because they clarify that, in certain situations, it's possible for a patient to test "MRD negative", but not have a complete response to treatment -- something that is (rightfully) confusing for most people,
And JPC is correct -- there are many different MRD tests under development. Researchers are constantly trying to find more sensitive ways to check for the presence of myeloma cells in a patient's bone marrow (or blood).
Hope this helps a bit.
Although I can understand why you might think that, free light chain (FLC) testing is not the same as minimal residual disease (MRD) testing. It's true that the FLC test is more sensitive than the usual M-spike measurement at picking up whether there are still myeloma cells around, producing monoclonal immunoglobulins and/or free light chains. But it's still not the same thing as MRD testing.
With MRD testing, you are using really, really sensitive techniques to check whether there are myeloma cells in the patient's bone marrow. There are also MRD tests being developed to check for signs of myeloma cells in the circulating blood. But most of the research being done on MRD testing for myeloma is focused on checking for myeloma cells in the bone marrow.
This is different than FLC testing, which doesn't check for myeloma cells, but instead measures parts of the immunoglobulin molecules that are produced by both healthy plasma cells and unhealthy (myeloma) plasma cells. If you have an MRD test done, you want the result to come back "negative", meaning the test showed no signs at all of myeloma cells. With an FLC test, the normal range is still positive, because even healthy people who have never had myeloma produce free light chains.
This article from the Beacon last spring has some useful introductory information about MRD testing that might be helpful for you:
https://myelomabeacon.org/news/2014/04/08/minimal-residual-disease-deep-sequencing-prognosis-multiple-myeloma/
There's also a useful extended discussion of MRD testing in the comments on this Beacon article:
https://myelomabeacon.org/news/2014/07/16/rvd-newly-diagnosed-multiple-myeloma/
Those comments are helpful because they clarify that, in certain situations, it's possible for a patient to test "MRD negative", but not have a complete response to treatment -- something that is (rightfully) confusing for most people,
And JPC is correct -- there are many different MRD tests under development. Researchers are constantly trying to find more sensitive ways to check for the presence of myeloma cells in a patient's bone marrow (or blood).
Hope this helps a bit.
Re: Where can I get minimal residual disease (MRD) testing?
One of the things that you might consider asking your oncologist about is why you are on such an aggressive maintenance regimen. Most people seem to be on Revlimid or Velcade with, or without, Dex. I don't know a whole lot about IgA myeloma other than it seems to be harder to track through the m-spike. Maybe you could decrease your regimen so that you have fewer side effects.
Are you being seen by a myeloma specialist or a local oncologist? If you are being seen by a myeloma specialist, talking to him about the advisability of MRD testing should be done. I do know that MSK does do them since one of the people in my support group is being treated through a clinical trial there and had one post transplant. I don't know if they do them outside of clinical trials.
Nancy in Phila
Are you being seen by a myeloma specialist or a local oncologist? If you are being seen by a myeloma specialist, talking to him about the advisability of MRD testing should be done. I do know that MSK does do them since one of the people in my support group is being treated through a clinical trial there and had one post transplant. I don't know if they do them outside of clinical trials.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Where can I get minimal residual disease (MRD) testing?
Hi Ellen- agree that you need a second opinion. Most myeloma specialists would recommend only lenalidomide for maintenance to a patient in sCR whether or not you are MRD negative. I do agree that you can ask for MRD testing and this will give you more information with which to make a decision. I am in CR after a transplant and have requested a biopsy with MRD testing for the past 2 years. I am still taking maintainable but it is good to make that decision with all possible information.
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Tough Mom - Who do you know with myeloma?: myself
- When were you/they diagnosed?: January 2013
- Age at diagnosis: 45
Re: Where can I get minimal residual disease (MRD) testing?
Hi all,
In answer to your question about why the aggressive maintenance, it's because I have the 1q21 addition. This protocol was recommended by a well regarded myeloma specialist at Mt. Sinai. Many of us in NY are familiar with him. I don't see him on a regular basis, but my oncologist feels that he is "the" expert with respect to maintenance programs.
Because of the GI problems I am experiencing, my oncologist has changed my Revlimid schedule to two weeks on and one week off. Hopefully, this will help. He also gave me a 10-day break from the Revlimid altogether. I will have to see how this goes.
I feel that my ability to handle the drugs is not as good as it was prior to transplant, even though they are at lower levels than during induction. Maybe it's also my size. I'm a little over 5 ft and weigh about 115 (I lost 20 pounds between induction and stem cell transplant.). Stem cell transplant was 9 months ago. I work 4 days per week, and pretty much do everything I did before, except I cannot exercise as much, (I was a gym rat). Just don't have the energy. That is frustrating too!
Thanks for all the responses. Love the Beacon!!!
In answer to your question about why the aggressive maintenance, it's because I have the 1q21 addition. This protocol was recommended by a well regarded myeloma specialist at Mt. Sinai. Many of us in NY are familiar with him. I don't see him on a regular basis, but my oncologist feels that he is "the" expert with respect to maintenance programs.
Because of the GI problems I am experiencing, my oncologist has changed my Revlimid schedule to two weeks on and one week off. Hopefully, this will help. He also gave me a 10-day break from the Revlimid altogether. I will have to see how this goes.
I feel that my ability to handle the drugs is not as good as it was prior to transplant, even though they are at lower levels than during induction. Maybe it's also my size. I'm a little over 5 ft and weigh about 115 (I lost 20 pounds between induction and stem cell transplant.). Stem cell transplant was 9 months ago. I work 4 days per week, and pretty much do everything I did before, except I cannot exercise as much, (I was a gym rat). Just don't have the energy. That is frustrating too!
Thanks for all the responses. Love the Beacon!!!
10 posts
• Page 1 of 1