I hope to get an answer from my doctor this Friday, but I had my bone marrow biopsy (BMB) two weeks ago. So far, it looks good for MGUS. The test results I see online for FISH say,
"Hybridization patterns within normal values in plasma-cell-enriched cells". There were no deletions or copies, etc.
If I understand correctly, FISH is done to see if you have a good or poor prognosis if you are diagnosed with myeloma.
My question then is from the other way around. If the FISH results show no abnormalities, then can I assume it is highly unlikely there are any myeloma plasma cells?
I have searched quite a bit, but I found nothing. I'd like to assume that means the BMB will show clean, but I don't know for sure. And I'd like to be prepared for my doctor's appointment.
If anyone can point me to a resource to find out, I would appreciate it.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: BMB results help - FISH good, don't know % plasma cells
I hope someone will have a good link for you for the general understanding of all this.
I am just a patient and no doctor, but from my learning related to my SMM condition, here is how I would view your FISH result of no abnormalities detected: It's a good result, so be reassured.
But I would want to know what specific FISH "panels" they ran, as for instance in my case they only ran FOUR panels, each one capable of detecting 1 or 2 typical types of abnormalies (for instance, 4:14 translocation, 17p deletion etc.). In other words, I could have OTHER abnormalities that they did not test for. In my case I think they tested for critical ones that tend to be prognostic of higher risk, or ones that would be characteristic of a developing multiple myeloma to confirm their diagnosis.
The fact that you have an m-spike seems to establish that you have mutations in some plasma cells. Normal plasma cells do not create monoclonal protein. They may be relatively benign mutations, and/or ones they did not specifically test for. Over time there is a tendency for the condition to advance, with further mutations occuring in these plasma cells, and is why we need to be monitored.
Hopefully you will stay at this low level indefinitely, as a majority do. Low IgM which I believe you mentioned some time back is probably related. When other immunoglobulin classes are depleted it is referred to as immunoparesis. I read somewhere that the IgM antibodies are the first called in to fight infection, and this may be the cause of your tendancy toward infections.
All just my lay-person's speculation so discuss with your doctor.
I am just a patient and no doctor, but from my learning related to my SMM condition, here is how I would view your FISH result of no abnormalities detected: It's a good result, so be reassured.
But I would want to know what specific FISH "panels" they ran, as for instance in my case they only ran FOUR panels, each one capable of detecting 1 or 2 typical types of abnormalies (for instance, 4:14 translocation, 17p deletion etc.). In other words, I could have OTHER abnormalities that they did not test for. In my case I think they tested for critical ones that tend to be prognostic of higher risk, or ones that would be characteristic of a developing multiple myeloma to confirm their diagnosis.
The fact that you have an m-spike seems to establish that you have mutations in some plasma cells. Normal plasma cells do not create monoclonal protein. They may be relatively benign mutations, and/or ones they did not specifically test for. Over time there is a tendency for the condition to advance, with further mutations occuring in these plasma cells, and is why we need to be monitored.
Hopefully you will stay at this low level indefinitely, as a majority do. Low IgM which I believe you mentioned some time back is probably related. When other immunoglobulin classes are depleted it is referred to as immunoparesis. I read somewhere that the IgM antibodies are the first called in to fight infection, and this may be the cause of your tendancy toward infections.
All just my lay-person's speculation so discuss with your doctor.
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Carol of Eden - Name: Carol
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: MGUS 2009, SMM 2013
- Age at diagnosis: 50
Re: BMB results help - FISH good, don't know % plasma cells
Hi Toni,
You've gotten some good feedback from Carol, so I'll just add a few more comments.
First, FISH testing is done to see if the myeloma cells in your bone marrow have certain specific chromosomal abnormalities. You cannot do FISH testing, however, unless there are actually myeloma cells in the bone marrow to use for the testing.
So the fact that the FISH testing did not find any chromosomal abnormalities does not mean that there were no myeloma cells in your bone marrow. In fact, in an indirect way, it means the opposite. There were enough myeloma cells to do FISH testing. However, you probably shouldn't draw too many conclusions from that because I don't think you need a lot of myeloma cells to do FISH testing.
So the FISH results don't tell you anything about what your plasma cell percentage is. You'll have to find the specific report, or part of the report, about that.
I agree with Carol that it's a good sign, at least on the surface, that no chromosomal abnormalities were found in the cells that were tested. For multiple myeloma and smoldering myeloma, that sort of finding is usually a good sign, and I think it's perfectly reasonable to assume the same holds true for MGUS.
The reason you have to assume it, however, rather than look it up in a specific research study is because as far as I can tell there really isn't much recent published research on how much specific chromosomal abnormalities affect the risk of MGUS patients progressing to multiple myeloma. One of the only recent "papers" I could find on the subject was this presentation from the 2013 International Myeloma Workshop,
http://szpiczak.org/lang/aktualnosci/kongresy/rok_2013/pdf/relacja_13th_imw_2013/MGUS_clonal_evolution.pdf
which is quite technical and uses unpublished data. (I haven't been able to find any research article that has been published based on the presentation.)
There is also this paper published a few years ago,
http://clincancerres.aacrjournals.org/content/17/7/1692.full
which concludes, roughly, that you see more chromosomal abnormalities, and you see them more frequently, as you go from MGUS patients to smoldering myeloma patients to multiple myeloma patients.
Hope all of this is helpful without being too confusing!
You've gotten some good feedback from Carol, so I'll just add a few more comments.
First, FISH testing is done to see if the myeloma cells in your bone marrow have certain specific chromosomal abnormalities. You cannot do FISH testing, however, unless there are actually myeloma cells in the bone marrow to use for the testing.
So the fact that the FISH testing did not find any chromosomal abnormalities does not mean that there were no myeloma cells in your bone marrow. In fact, in an indirect way, it means the opposite. There were enough myeloma cells to do FISH testing. However, you probably shouldn't draw too many conclusions from that because I don't think you need a lot of myeloma cells to do FISH testing.
So the FISH results don't tell you anything about what your plasma cell percentage is. You'll have to find the specific report, or part of the report, about that.
I agree with Carol that it's a good sign, at least on the surface, that no chromosomal abnormalities were found in the cells that were tested. For multiple myeloma and smoldering myeloma, that sort of finding is usually a good sign, and I think it's perfectly reasonable to assume the same holds true for MGUS.
The reason you have to assume it, however, rather than look it up in a specific research study is because as far as I can tell there really isn't much recent published research on how much specific chromosomal abnormalities affect the risk of MGUS patients progressing to multiple myeloma. One of the only recent "papers" I could find on the subject was this presentation from the 2013 International Myeloma Workshop,
http://szpiczak.org/lang/aktualnosci/kongresy/rok_2013/pdf/relacja_13th_imw_2013/MGUS_clonal_evolution.pdf
which is quite technical and uses unpublished data. (I haven't been able to find any research article that has been published based on the presentation.)
There is also this paper published a few years ago,
http://clincancerres.aacrjournals.org/content/17/7/1692.full
which concludes, roughly, that you see more chromosomal abnormalities, and you see them more frequently, as you go from MGUS patients to smoldering myeloma patients to multiple myeloma patients.
Hope all of this is helpful without being too confusing!
Re: BMB results help - FISH good, don't know % plasma cells
Ian and Carol are spot on. As an example to what Ian pointed out, I thankfully had clean cytogenetics from my FISH panel when I was first tested, yet I have a 11% plasma cell level. You'll be able to put all this together and talk in definitive terms when you sit down and discuss the complete reports with your doc.
As Carol stated, anybody that has some stage of multiple myeloma has "some" genetically mutated cells in their system. The FISH test simply looks for a handful of the most significant mutations that doctors can utilize for diagnostic, prognostic and drug-selection purposes.
As Carol stated, anybody that has some stage of multiple myeloma has "some" genetically mutated cells in their system. The FISH test simply looks for a handful of the most significant mutations that doctors can utilize for diagnostic, prognostic and drug-selection purposes.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: BMB results help - FISH good, don't know % plasma cells
Carol - Thank you so much for that explanation! I feel like I understand it much better now ... so grateful 
Ian - Thank you as well, you have quoted many studies that I will read when I have a little more time. This is all starting to become clearer to me.
Multibilly - Once again thanks. You probably more than anyone know how much I post on the Beacon
and I'm just a MGUSer. For some reason I did not realize that about your "clear" FISH results.
All - The FISH tests said "40 were tested" I believe that's the minimum for FISH. I know I've read others who were tested for more than that.
Oh, and Carol, thanks for reminding me about the IgM depletion. I had forgotten that can cause some susceptibility to infection. I'm finally starting to feel a little better after a week of fevers, chills, shakes.
I am so very grateful to all of you for explaining this to me. Thank you!
Ian - Thank you as well, you have quoted many studies that I will read when I have a little more time. This is all starting to become clearer to me.
Multibilly - Once again thanks. You probably more than anyone know how much I post on the Beacon
and I'm just a MGUSer. For some reason I did not realize that about your "clear" FISH results.All - The FISH tests said "40 were tested" I believe that's the minimum for FISH. I know I've read others who were tested for more than that.
Oh, and Carol, thanks for reminding me about the IgM depletion. I had forgotten that can cause some susceptibility to infection. I'm finally starting to feel a little better after a week of fevers, chills, shakes.
I am so very grateful to all of you for explaining this to me. Thank you!
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: BMB results help - FISH good, don't know % plasma cells
Ok, so I understand a little better. My doctor's office usually posts all test results online so I can have easy access to them. I sent a note last night asking what the % of plasma cells were and I received a response saying that pathology is never posted on the Internet as it is something which needs to be discussed between the health care provider and the patient to be certain there is a good understanding and communication.
As I said to my husband at lunch today, I just want to know everything I can before a doctor appointment so I can understand what they're saying and I can ask questions.
Otherwise, I think of all the questions about an hour after I leave the office
As I said to my husband at lunch today, I just want to know everything I can before a doctor appointment so I can understand what they're saying and I can ask questions.
Otherwise, I think of all the questions about an hour after I leave the office
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: BMB results help - FISH good, don't know % plasma cells
Hi Toni,
If you consider consulting with a multiple myeloma specialist, you would get a much better understanding of all of your data.
Think about finding a good doctor who is willing to support you, as this is only the beginning of a very long journey for you.
If you consider consulting with a multiple myeloma specialist, you would get a much better understanding of all of your data.
Think about finding a good doctor who is willing to support you, as this is only the beginning of a very long journey for you.
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Wondering
Re: BMB results help - FISH good, don't know % plasma cells
Wondering - sorry I wasn't more clear ... I have an appointment this Friday with a myeloma specialist I am working with. I couldn't agree more - it's very important to see a specialist! Thank you
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: BMB results help - FISH good, don't know % plasma cells
Hi Toni,
You may already know what I'm going to mention here, but just in case ...
If your BMB shows <10% plasma cells, then you're considered to have MGUS. If it's >=10%, then you're considered to have smoldering myeloma (assuming you have no CRAB symptoms).
My myeloma specialist is like yours - blood and urine lab results are posted to the portal, but not pathology results or other test results.
At this point I see my specialist once per month. During the month I write down questions in an app on my iPhone as they occur to me (often when reading the Beacon!). My specialist cringes when he sees me pull out my iPhone toward the end of each visit.
Anyway, my point is just that it's good to take time before the MD visit to write down your questions ahead of time.
You may already know what I'm going to mention here, but just in case ...
If your BMB shows <10% plasma cells, then you're considered to have MGUS. If it's >=10%, then you're considered to have smoldering myeloma (assuming you have no CRAB symptoms).
My myeloma specialist is like yours - blood and urine lab results are posted to the portal, but not pathology results or other test results.
At this point I see my specialist once per month. During the month I write down questions in an app on my iPhone as they occur to me (often when reading the Beacon!). My specialist cringes when he sees me pull out my iPhone toward the end of each visit.
Anyway, my point is just that it's good to take time before the MD visit to write down your questions ahead of time.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: BMB results help - FISH good, don't know % plasma cells
Mike - great point! I strongly believe the BMB will confirm the diagnosis of MGUS. I am not sure what questions to ask though.
If the % is 10 or more, I would be surprised. I assume with SMM there is more frequent monitoring, but I am very low risk IgG, low M-spike, kappa light chain, etc.
I think the key questions I might have is if my frequent, but mild / moderate illnesses are related to MGUS.
Splendid idea to get your ideas for questions from the Beacon!
If the % is 10 or more, I would be surprised. I assume with SMM there is more frequent monitoring, but I am very low risk IgG, low M-spike, kappa light chain, etc.
I think the key questions I might have is if my frequent, but mild / moderate illnesses are related to MGUS.
Splendid idea to get your ideas for questions from the Beacon!
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
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