It has been almost one year since my SCT [stem cell transplant] and Thursday I go in for testing. I am non-secretory ... completely, and I had a MRI this summer then a PET in October. Both were clean and my doctor told me after the PET that I was in remission. When we set up this appointment this week my doctor said the purpose would be MRD testing and that I would have the test at 9 a.m. and results by noon. These are my questions if anyone would like to help..
My local oncologist said what I am having is probably flow cytometry testing. What will that determine and is it the state of art in MRD testing?
What is involved with the test? Will it be a full bone marrow biopsy or a smaller take of blood from the marrow?
What am I looking for is: What would be a positive response, and what would be an "uhh ohh" moment, for lack of better terms.
Based on the results what would be future options? Can they tell if the transplant is not working and start a different chemo? Is there the possibility of a second SCT?
I am on Revlimid maintenance now with 21 days on and 7 off, 10 mg. If things are the same will I stay the same as far as the maintenance goes?
Of course every trip to the myeloma doctor is filled with almost unbearable anxiety. I am simply curious as to what weight this test carries and what light this shines on my future as a myeloma patient who has a lot of plans.
I truly have not had any symptoms in a long time, I feel strong, not tired, work full time, have not had so much as a cold since transplant. I feel so good it scares my to think there could be issues and those issues could put me back in treatment.
Thanks.
Forums
Re: Flow cytometry testing for MRD status
Hi Bluemountain,
Flow cytometry is the most common method for doing minimal residual disease (MRD) testing. There are other methods, however, so it's not an absolute given that flow cytometry will be the method used at your treatment center.
You probably should interpret it as a good sign that your doctor wants to have your MRD status tested. More than likely, it indicates that you've achieved such a good response to your treatment that your doctor wants to check if there are any signs at all if myeloma can be detected in your body.
Bone marrow samples are typically what are used for MRD testing.
The Beacon has published several articles in the past year or two that discuss MRD testing. You can find them listed at this page:
https://myelomabeacon.org/tag/minimal-residual-disease/
Have others here in the forum had MRD testing done and, if so, what was the procedure, why was it done, and how were the results used to steer your treatment after the testing?
Flow cytometry is the most common method for doing minimal residual disease (MRD) testing. There are other methods, however, so it's not an absolute given that flow cytometry will be the method used at your treatment center.
You probably should interpret it as a good sign that your doctor wants to have your MRD status tested. More than likely, it indicates that you've achieved such a good response to your treatment that your doctor wants to check if there are any signs at all if myeloma can be detected in your body.
Bone marrow samples are typically what are used for MRD testing.
The Beacon has published several articles in the past year or two that discuss MRD testing. You can find them listed at this page:
https://myelomabeacon.org/tag/minimal-residual-disease/
Have others here in the forum had MRD testing done and, if so, what was the procedure, why was it done, and how were the results used to steer your treatment after the testing?
Re: Flow cytometry testing for MRD status
It seems like very few people have had MRD testing. I spoke to the leader of our local support group and she told me nobody in our fairly large group had experienced the test. I guess I would just like to hear from someone who had been down the road before.
I have said this before ... for the almost 2 years I have had multiple myeloma my only moments of discomfort have been during treatment. I did not come to the table complaining of exhaustion or broken bones. I had a plasmacytoma that hurt bad and did extreme damage to my back but that was dealt with and things seem to get better every day. I am also non secretory, all bone density tests etc. have been fine, only broken bone issues were around the plasmacytoma and I had one of the top 10 surgeons in the US do my back reconstruction. Back is improving and I am getting stronger by the day.
I work full time, go out a couple times a week, I just flew to New Orleans and saw two concerts and hung out with friends. My need to take naps has gone away expect on those lazy weekends when I just don't feel like being part of the world. I feel good, strong, normal, no colds or flu (everyone I know got the flu except me including my wife).
Every test, every trip up the highway to my multiple myeloma clinic, represents the potential for my new normal, that I have embraced, to evolve into another new normal that could be worse.
I would just love to hear from someone who has had the test, what am I hoping to hear from my doctor (I realize MRD zero but) and what do they do next. My two years have been pretty standard -- radiation, back surgery, chemo, stem cell transplant. Now things get ... different. Opinions and treatment plans start to vary and i want all the info I can find.
And trust me ... if you every have a question for me, ask. This is a strange journey that very few of us understand!
Peace!
I have said this before ... for the almost 2 years I have had multiple myeloma my only moments of discomfort have been during treatment. I did not come to the table complaining of exhaustion or broken bones. I had a plasmacytoma that hurt bad and did extreme damage to my back but that was dealt with and things seem to get better every day. I am also non secretory, all bone density tests etc. have been fine, only broken bone issues were around the plasmacytoma and I had one of the top 10 surgeons in the US do my back reconstruction. Back is improving and I am getting stronger by the day.
I work full time, go out a couple times a week, I just flew to New Orleans and saw two concerts and hung out with friends. My need to take naps has gone away expect on those lazy weekends when I just don't feel like being part of the world. I feel good, strong, normal, no colds or flu (everyone I know got the flu except me including my wife).
Every test, every trip up the highway to my multiple myeloma clinic, represents the potential for my new normal, that I have embraced, to evolve into another new normal that could be worse.
I would just love to hear from someone who has had the test, what am I hoping to hear from my doctor (I realize MRD zero but) and what do they do next. My two years have been pretty standard -- radiation, back surgery, chemo, stem cell transplant. Now things get ... different. Opinions and treatment plans start to vary and i want all the info I can find.
And trust me ... if you every have a question for me, ask. This is a strange journey that very few of us understand!
Peace!
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bluemountain
Re: Flow cytometry testing for MRD status
Hi bluemountain,
First off it is great that you are out living life while battling this disease. It is always great to hear about others that are doing well.
My entire treatment is based around attaining MRD negative status. I use a PCR test as my main test for MRD. I did have a Flow Cytometry test done during my first round of tests after my allo as well. The PCR test is more expensive than Flow and it has to be set up for each individual patient. So far PCR has tested to be a little more sensitive than Flow but the results are similar. Note that Flow/PCR tests are limited by the fact that they come from one spot on the body. That is why your doctor is using it in conjunction with imaging.
I get the benefit of not using any drugs for maintenance as long as I remain MRD negative. I would ask your doctor if his/her strategy will change at all depending on the results of the test. It is possible they may discuss some type of consolidation if you are MRD positive. Their strategy may depend on your presentation. I have an aggressive form of myeloma that goes into remission quicker than most patients but tends to come out of remission between 12-20 months. That is the reason I am monitored for MRD by such a sensitive method (PCR). Many patients have a less aggressive form that makes attaining MRD negativity less important than it is for me. In my case if I was not MRD negative via PCR I would have treated with more immunotherapy (donor lymphocyte infusion) along with Revlimid to try and attain PCR negative status.
You must go to a hospital with a top notch testing team if they can get you results back in 3 hours for a flow cytometry test! Please keep us up to date on the results of your test. I am interested in reading how different doctors use the information from MRD testing.
Mark
First off it is great that you are out living life while battling this disease. It is always great to hear about others that are doing well.
My entire treatment is based around attaining MRD negative status. I use a PCR test as my main test for MRD. I did have a Flow Cytometry test done during my first round of tests after my allo as well. The PCR test is more expensive than Flow and it has to be set up for each individual patient. So far PCR has tested to be a little more sensitive than Flow but the results are similar. Note that Flow/PCR tests are limited by the fact that they come from one spot on the body. That is why your doctor is using it in conjunction with imaging.
I get the benefit of not using any drugs for maintenance as long as I remain MRD negative. I would ask your doctor if his/her strategy will change at all depending on the results of the test. It is possible they may discuss some type of consolidation if you are MRD positive. Their strategy may depend on your presentation. I have an aggressive form of myeloma that goes into remission quicker than most patients but tends to come out of remission between 12-20 months. That is the reason I am monitored for MRD by such a sensitive method (PCR). Many patients have a less aggressive form that makes attaining MRD negativity less important than it is for me. In my case if I was not MRD negative via PCR I would have treated with more immunotherapy (donor lymphocyte infusion) along with Revlimid to try and attain PCR negative status.
You must go to a hospital with a top notch testing team if they can get you results back in 3 hours for a flow cytometry test! Please keep us up to date on the results of your test. I am interested in reading how different doctors use the information from MRD testing.
Mark
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Mark
Re: Flow cytometry testing for MRD status
UAMS has begun testing for MRD on all their patients since over a year ago, I believe. Certainly, in they are testing them now using 8-color multiparameter flow cytometry. They test with 3 million cells.
My mom has had this done twice, and again will have this tested when she comes back for tests in July 2014.
My mom has had this done twice, and again will have this tested when she comes back for tests in July 2014.
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Flow cytometry testing for MRD status
Hello Bluemountain,
I agree with the information posted regarding the MRD test.
You are in somewhat of a different scenario though because you are non-secretory and so the most direct way to determine with confidence the amount of myeloma that you have on board is with a bone marrow biopsy. If there are no visible collections of plasma cells in the biopsy by using a light microscope then a more sensitive way of looking for any residual myeloma cells is to use either flow cytometry or PCR testing on the bone marrow. In general, one cannot use a CT/PET alone to declare a remission.
As far as what would be a "bad" sign for this testing? It would be evidence of significant residual myeloma. This would be myeloma that can be seen with a light microscope ... the type of microscope that has been around for decades. Even if you have evidence of myeloma by bone marrow biopsy you do not necessarily require treatment at this time. This would mean close observation and repeat testing for CRAB symptoms with or without repeat bone marrow biopsy.
I will leave the final question open for now e.g. what could be done if you have recurrent myeloma? There are many options for treatment if that is the case.
Best of luck with your testing. I hope everything comes out negative for residual myeloma.
I agree with the information posted regarding the MRD test.
You are in somewhat of a different scenario though because you are non-secretory and so the most direct way to determine with confidence the amount of myeloma that you have on board is with a bone marrow biopsy. If there are no visible collections of plasma cells in the biopsy by using a light microscope then a more sensitive way of looking for any residual myeloma cells is to use either flow cytometry or PCR testing on the bone marrow. In general, one cannot use a CT/PET alone to declare a remission.
As far as what would be a "bad" sign for this testing? It would be evidence of significant residual myeloma. This would be myeloma that can be seen with a light microscope ... the type of microscope that has been around for decades. Even if you have evidence of myeloma by bone marrow biopsy you do not necessarily require treatment at this time. This would mean close observation and repeat testing for CRAB symptoms with or without repeat bone marrow biopsy.
I will leave the final question open for now e.g. what could be done if you have recurrent myeloma? There are many options for treatment if that is the case.
Best of luck with your testing. I hope everything comes out negative for residual myeloma.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Flow cytometry testing for MRD status
I had the bone marrow biopsy and they are going to do a flow cytometry test as well as a several others. My multiple myeloma specialist repeated that all indicators are that I am in remission and that she does not expect that I will need to travel to see her again for a year unless something occurs she does not expect. If my numbers are up or erratic she says we will simply "fix" them and I would see her in six months.
One of the things all three oncologists I have talked to recently have said is that, as a non secretory patient, a lot is going to depend on how I look and feel. I have not looked or felt this good in a very long time, so I feel confident that I am entering a little bit more "normal" phase of treatment ... hopefully a couple of good years of remission at least.
If not, I'll deal with it, but boy would it be nice!
One of the things all three oncologists I have talked to recently have said is that, as a non secretory patient, a lot is going to depend on how I look and feel. I have not looked or felt this good in a very long time, so I feel confident that I am entering a little bit more "normal" phase of treatment ... hopefully a couple of good years of remission at least.
If not, I'll deal with it, but boy would it be nice!
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bluemountain
Re: Flow cytometry testing for MRD status
Ever heard the song by Tom Petty "The Waiting is the Hardest Part"? Ohh my is that true. I hope and pray things are well and I can have a year or so to get it together and plan for whatever life may throw me as opposed to being in treatment and feeling like hell. Either way, it is not my call ... that is in the hands of a higher power. Not sure what that power is, but I know I can only do so much!
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bluemountain
Re: Flow cytometry testing for MRD status
The snow has pushed back the test results a few days so I still know nothing going into the weekend. I did get a look at the blood test results and they are all good ... no calcium problems, no kidney issues, no anemia and my PET shows no lesions and generally no areas of concern so I have reason to believe this should not be a problem but I hate the waiting.
In reality do normal blood tests, normal PET and no symptoms really mean anything. Is it ALL about the % of bad cells in the bone marrow?
One day I think I understand this horrible disease then the next I don't feel like I have a clue ...
Peace and have a great weekend!
In reality do normal blood tests, normal PET and no symptoms really mean anything. Is it ALL about the % of bad cells in the bone marrow?
One day I think I understand this horrible disease then the next I don't feel like I have a clue ...
Peace and have a great weekend!
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bluemountain
Re: Flow cytometry testing for MRD status
Well I got most of the results from the testing/follow up one year after transplant. I guess the I'll break it up:
Good News:
No bone Involvement
No organ involvement
All blood tests are normal except a little light on platelets due to Revlimid. All others are dead center on the graphs.
PET/CT Scan etc - All normal showing no imaging issues.
No anemia
No calcium issues
My doctor said if I walked in the door today to be tested for multiple myeloma, that with these test results she would have to say I do not currently have multiple myeloma.
Bad News:
5% cell involvement it appears
Confusing News:
My doctor is waiting to confirm results until after she gets back the cytometry tests because the 5% abnormal cells that appear to be myeloma will not accept the stain that confirms the fact that they are myeloma. She also looked at my history and, this is my 5th or 6th bone marrow biopsy and all other times the stain did take.
Of course I am non secretory so I have no light chain or m-spike movement. I also feel perfectly normal, no pain, sickness, colds etc.
Thanks
Moderator's note: Bluemountain's questions about these results have been moved (along with the relevant background information) to this new thread:
https://myelomabeacon.org/forum/non-secretory-bone-marrow-biopsy-results-t2828.html
Good News:
No bone Involvement
No organ involvement
All blood tests are normal except a little light on platelets due to Revlimid. All others are dead center on the graphs.
PET/CT Scan etc - All normal showing no imaging issues.
No anemia
No calcium issues
My doctor said if I walked in the door today to be tested for multiple myeloma, that with these test results she would have to say I do not currently have multiple myeloma.
Bad News:
5% cell involvement it appears
Confusing News:
My doctor is waiting to confirm results until after she gets back the cytometry tests because the 5% abnormal cells that appear to be myeloma will not accept the stain that confirms the fact that they are myeloma. She also looked at my history and, this is my 5th or 6th bone marrow biopsy and all other times the stain did take.
Of course I am non secretory so I have no light chain or m-spike movement. I also feel perfectly normal, no pain, sickness, colds etc.
Thanks
Moderator's note: Bluemountain's questions about these results have been moved (along with the relevant background information) to this new thread:
https://myelomabeacon.org/forum/non-secretory-bone-marrow-biopsy-results-t2828.html
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bluemountain
11 posts
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