My husband started treatment with cyclophosphamide, thalidomide, and dexamethasone (CTD) almost three months ago, and we just got first test results after he started his treatment.
All his blood and urine tests are back to normal and there is no sign of any kind of illness. However, there is absolutely no change in his biopsy results and his plasma cells are still at 60%.
Any thoughts?
Forums
10 posts
• Page 1 of 1
-
Maya - Who do you know with myeloma?: husband
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 59
Re: Bone marrow results don't match blood test results
Hi Maya,
What were his IgA, serum lambda and kappa free light chain and serum M-spike (aka abnormal protein band, parapaprotein, monoclonal protein, etc) values before treatment and now?
Note that IgA-type multiple myeloma can be difficult to quantify accurately, so that is the reason I'm starting with these questions.
What were his IgA, serum lambda and kappa free light chain and serum M-spike (aka abnormal protein band, parapaprotein, monoclonal protein, etc) values before treatment and now?
Note that IgA-type multiple myeloma can be difficult to quantify accurately, so that is the reason I'm starting with these questions.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Bone marrow results don't match blood test results
I don't have exact values with me right now, but his myeloma type is IgA kappa, and those values were quite high before he started a treatment. All values are now within the normal range tho.
Could you explain this a bit further, please? Does that mean it's possible his blood and urine results are wrong?
Note that IgA-type multiple myeloma can be difficult to quantify accurately, so that is the reason I'm starting with these questions.
Could you explain this a bit further, please? Does that mean it's possible his blood and urine results are wrong?
-
Maya - Who do you know with myeloma?: husband
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 59
Re: Bone marrow results don't match blood test results
First off, I'm not a doctor, so please verify all this with your doctor.
Measuring the amount of monoclonal IgA via electrophoresis is uniquely challenging because the IgA M-spike shows up in the same part of the electrophoresis graph as do some other proteins. So, the IgA M-spike value can be "masked" by these other proteins. It is therefore important to also look at the total IgA value (found in the quantified immunoglobulin test) when tracking IgA type multiple myeloma, and to also look at other markers like the serum free light chain values, etc.
See this thread for a more detailed explanation:
https://myelomabeacon.org/forum/iga-and-m-spike-t4563.html
But assuming for the meantime that the serum markers are truly correct and there is no sign of multiple myeloma in the blood or urine, then another possibility could be that the multiple myeloma has transformed into a "non-secretory" version of multiple myeloma. However, I'm not sure that I've heard of such a transformation happening this quickly....but I'm not a doctor and don't know for sure how long such transformations usually take.
In any case, I am going to guess that your doctor probably suggested getting a new bone marrow biopsy and some new lab tests in the near future to help confirm what is happening?
Measuring the amount of monoclonal IgA via electrophoresis is uniquely challenging because the IgA M-spike shows up in the same part of the electrophoresis graph as do some other proteins. So, the IgA M-spike value can be "masked" by these other proteins. It is therefore important to also look at the total IgA value (found in the quantified immunoglobulin test) when tracking IgA type multiple myeloma, and to also look at other markers like the serum free light chain values, etc.
See this thread for a more detailed explanation:
https://myelomabeacon.org/forum/iga-and-m-spike-t4563.html
But assuming for the meantime that the serum markers are truly correct and there is no sign of multiple myeloma in the blood or urine, then another possibility could be that the multiple myeloma has transformed into a "non-secretory" version of multiple myeloma. However, I'm not sure that I've heard of such a transformation happening this quickly....but I'm not a doctor and don't know for sure how long such transformations usually take.
In any case, I am going to guess that your doctor probably suggested getting a new bone marrow biopsy and some new lab tests in the near future to help confirm what is happening?
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Bone marrow results don't match blood test results
Maya
I assume the bone marrow biopsy was to establish remission from having normal blood / urine results. I would ask your treating doctors whether this suggests an anomalous result needing to be repeated to confirm blood / urine as normal, or there is another explanation for the myeloma cells in his case having a high percentage without this showing up in blood / urine.
Myeloma is not always straight forward in terms of its behaviour in individuals and responses to clinical questions by individuals on the forum may not help your husband or you..
I know as a treated myeloma patient that the clinical picture which is discordant can only be properly addressed in the treating clinic with your myeloma clinician. Even they can have have difficulties with trying to work out these results, but they are the people treating us with the responsibility to try to explain.
I hope your husbands treating doctor will be helpful, if not get a second opinion from a myeloma specialist.
Edna
I assume the bone marrow biopsy was to establish remission from having normal blood / urine results. I would ask your treating doctors whether this suggests an anomalous result needing to be repeated to confirm blood / urine as normal, or there is another explanation for the myeloma cells in his case having a high percentage without this showing up in blood / urine.
Myeloma is not always straight forward in terms of its behaviour in individuals and responses to clinical questions by individuals on the forum may not help your husband or you..
I know as a treated myeloma patient that the clinical picture which is discordant can only be properly addressed in the treating clinic with your myeloma clinician. Even they can have have difficulties with trying to work out these results, but they are the people treating us with the responsibility to try to explain.
I hope your husbands treating doctor will be helpful, if not get a second opinion from a myeloma specialist.
Edna
Re: Bone marrow results don't match blood test results
@Multibilly - Thank you very much!
Doctor didn't suggest anything yet, he's puzzled with the results just as we are and said he wants to consult with his colleagues before doing anything.
@Edna - thank you, we will insist on repeating all tests.
Doctor didn't suggest anything yet, he's puzzled with the results just as we are and said he wants to consult with his colleagues before doing anything.
@Edna - thank you, we will insist on repeating all tests.
-
Maya - Who do you know with myeloma?: husband
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 59
Re: Bone marrow results don't match blood test results
Hello Maya,
I think it is wonderful that you are trying to understand more about what is happening with your husband's disease, and I encourage you to continue doing so. There are parts of the world where people are encouraged to think of doctors as gods, and to leave all decision making to them. Fortunately, that mentality is increasingly viewed as archaic. You will find countless examples here in the forum of people who took the time to to ask questions, read, and learn about multiple myeloma, and in the process ensured better treatment for themselves or their loved ones.
Multibilly has given you some very helpful advice. Allow me to share some additional thoughts that build on what he has said.
I agree that it is worth making sure the most recent tests that your husband had were correct and that there were no errors or mixups that resulted in this unusual situation. At the same time, I suspect enough different blood tests were done -- SPEP, serum immunofixation, and a serum free light chain assay -- that it is not just a single blood test that suggests your husband's disease has responded well to treatment.
I also believe that, given the nature of the test, it is unlikely that there was an error in the calculation of the bone marrow plasma cell percentage. There are enough stages in that test where a pathologist is actively involved that substantial error is unlikely.
Again, all tests should be checked and, if necessary, re-done, but let's assume for now that the tests are all correct.
What may have happened is that your husband had two or more different types of multiple myeloma in his body when he was originally diagnosed. One of the myeloma types may have accounted for most, or even all, of the monoclonal protein and free light chains picked up by your husband's blood tests. The myeloma of this type also may have responded very well to treatment, so that your husband's blood tests all show a very good response.
The second type of myeloma, however, may be located in the area where the doctors recently did the bone marrow biopsy. It apparently is more resistant to treatment. It also may be nonsecretory, or it may be present to such a small, localized extent that it doesn't have much effect on your husband's blood test results.
If an examination of the recent bone marrow biopsy results indicates they are reliable, then, to me, the logical next step is to assess how widespread the disease is that is still present, and to better characterize it (is it nonsecretory, or is it just very limited in scope?). The result of such an investigation -- which may involve imaging such as PET/CT -- will help determine what sort of additional treatment is necessary.
Note that, given the scenario I described above, doing a second bone marrow biopsy in a different part of your husband's body will NOT help determine what is going on. It might come up as showing no myeloma is present, but your husband could still have myeloma in the part of the body where the recent biopsy was performed. (Remember, myeloma is generally a "patchy" disease -- it is not uniformly present throughout the bone marrow in all parts of the body.)
Neither I nor most of the other people here in the forum are doctors, and you always have to keep that in mind. But, collectively, we have an immense amount of experience that can be brought to bear on your question, and which you can then assess and filter.
You can read more about myeloma consisting of different "types" ("clones") in this helpful article by Dr. Gareth Morgan, https://myelomabeacon.org/news/2014/11/03/evolution-intra-clonal-heterogeneity-multiple-myeloma/ .
Wishing you and your husband the best,
Cheryl
I think it is wonderful that you are trying to understand more about what is happening with your husband's disease, and I encourage you to continue doing so. There are parts of the world where people are encouraged to think of doctors as gods, and to leave all decision making to them. Fortunately, that mentality is increasingly viewed as archaic. You will find countless examples here in the forum of people who took the time to to ask questions, read, and learn about multiple myeloma, and in the process ensured better treatment for themselves or their loved ones.
Multibilly has given you some very helpful advice. Allow me to share some additional thoughts that build on what he has said.
I agree that it is worth making sure the most recent tests that your husband had were correct and that there were no errors or mixups that resulted in this unusual situation. At the same time, I suspect enough different blood tests were done -- SPEP, serum immunofixation, and a serum free light chain assay -- that it is not just a single blood test that suggests your husband's disease has responded well to treatment.
I also believe that, given the nature of the test, it is unlikely that there was an error in the calculation of the bone marrow plasma cell percentage. There are enough stages in that test where a pathologist is actively involved that substantial error is unlikely.
Again, all tests should be checked and, if necessary, re-done, but let's assume for now that the tests are all correct.
What may have happened is that your husband had two or more different types of multiple myeloma in his body when he was originally diagnosed. One of the myeloma types may have accounted for most, or even all, of the monoclonal protein and free light chains picked up by your husband's blood tests. The myeloma of this type also may have responded very well to treatment, so that your husband's blood tests all show a very good response.
The second type of myeloma, however, may be located in the area where the doctors recently did the bone marrow biopsy. It apparently is more resistant to treatment. It also may be nonsecretory, or it may be present to such a small, localized extent that it doesn't have much effect on your husband's blood test results.
If an examination of the recent bone marrow biopsy results indicates they are reliable, then, to me, the logical next step is to assess how widespread the disease is that is still present, and to better characterize it (is it nonsecretory, or is it just very limited in scope?). The result of such an investigation -- which may involve imaging such as PET/CT -- will help determine what sort of additional treatment is necessary.
Note that, given the scenario I described above, doing a second bone marrow biopsy in a different part of your husband's body will NOT help determine what is going on. It might come up as showing no myeloma is present, but your husband could still have myeloma in the part of the body where the recent biopsy was performed. (Remember, myeloma is generally a "patchy" disease -- it is not uniformly present throughout the bone marrow in all parts of the body.)
Neither I nor most of the other people here in the forum are doctors, and you always have to keep that in mind. But, collectively, we have an immense amount of experience that can be brought to bear on your question, and which you can then assess and filter.
You can read more about myeloma consisting of different "types" ("clones") in this helpful article by Dr. Gareth Morgan, https://myelomabeacon.org/news/2014/11/03/evolution-intra-clonal-heterogeneity-multiple-myeloma/ .
Wishing you and your husband the best,
Cheryl
Re: Bone marrow results don't match blood test results
Cheryl,
Excellent follow up. As usual, you bring up a lot of great points that I didn't consider.
Good luck with all this Maya. Let us know if we can help in any way.
Excellent follow up. As usual, you bring up a lot of great points that I didn't consider.
Good luck with all this Maya. Let us know if we can help in any way.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Bone marrow results don't match blood test results
Hello Maya
Cheryl has added to the responses to aid your understanding but I want to correct something.
Myeloma in the bones can have a focal or diffuse pattern. When it is focal (localised in particular spots) then a bone marrow biopsy of the hip area may not give as accurate a picture of plasma cell percentages. If the pattern of distribution is diffuse (spread fairly evenly) throughout the bone marrow then the bone marrow biopsy will more likely represent the true percentage. I know which pattern I have and what this means, that is the importance of knowledge to understand what is going on for your husband and a way to assess this.
I think in another post I stated from my experience that individual treating clinicians themselves are not always 100% sure of what is happening without further appropriate tests. I think the guesswork in myeloma is inherent in the nature of its biology.
In the initial bone marrow biopsy did they undertake any cytogenetic testing? Did they do this again at the time of supposed 'remission'? It may be possible that differences could show up indicating a clonal type less responsive to the treatment given.
Finally, if you feel your husband is being treated at a very respected institution with a high reputation for treating myeloma patients, then I feel you can rest assured they will want to find out what is happening and get the disease under the best control. But even the expert myeloma doctors are not gods and the differences approaches of treating philosophies of even the top clinicians are diverse. So always question if you do not know why something is or is not being done.
Cheryl has added to the responses to aid your understanding but I want to correct something.
Myeloma in the bones can have a focal or diffuse pattern. When it is focal (localised in particular spots) then a bone marrow biopsy of the hip area may not give as accurate a picture of plasma cell percentages. If the pattern of distribution is diffuse (spread fairly evenly) throughout the bone marrow then the bone marrow biopsy will more likely represent the true percentage. I know which pattern I have and what this means, that is the importance of knowledge to understand what is going on for your husband and a way to assess this.
I think in another post I stated from my experience that individual treating clinicians themselves are not always 100% sure of what is happening without further appropriate tests. I think the guesswork in myeloma is inherent in the nature of its biology.
In the initial bone marrow biopsy did they undertake any cytogenetic testing? Did they do this again at the time of supposed 'remission'? It may be possible that differences could show up indicating a clonal type less responsive to the treatment given.
Finally, if you feel your husband is being treated at a very respected institution with a high reputation for treating myeloma patients, then I feel you can rest assured they will want to find out what is happening and get the disease under the best control. But even the expert myeloma doctors are not gods and the differences approaches of treating philosophies of even the top clinicians are diverse. So always question if you do not know why something is or is not being done.
Re: Bone marrow results don't match blood test results
I was in the same situation. The lab made a mistake in its report. My doctor sent my bone marrow to Mayo Clinic for a second opinion. The report from Mayo was right on target with my blood work. I had MGUS. Then my doctor send me to a myeloma specialist for a second opinion and he was in agreement with my doctor.
This happened in 2012. They both agreed to keep an eye on it with no treatment. I do blood work every three months with my hematologist and a MRI once a year with my myeloma specialists. My IgG number is increasing and my free light chain. I call it watch and worry!!
May God Bless You. Good Luck.
This happened in 2012. They both agreed to keep an eye on it with no treatment. I do blood work every three months with my hematologist and a MRI once a year with my myeloma specialists. My IgG number is increasing and my free light chain. I call it watch and worry!!
May God Bless You. Good Luck.
-
whitey
10 posts
• Page 1 of 1