Hi there,
My father 69 years old was diagnosed with multiple myeloma stage 3 at 4 August 2014. He came to hospital due to back ache and hemoglobin level of 8. He has in spine lesions. He is already 3 months getting Velcade, dexamethasone and Cytoxan.
During first 1.5 month he was getting blood infusion almost every 2 weeks due to low level of hemoglobin (less than 9). Last 5 blood test showed that hemoglobin get rising from 10.3 to 11.3 (10.3, 10.5, 10.8, 11, and last 11.3) without blood infusion.
In addition the urine test showed that protein level dropped from 1184 mg (taken at 02 Sep 2014) to 435 mg (taken at 02 Nov 2014).
In addition urine test showed that lambda chain in urine dropped from 5 mg/l (taken at 14 Sep 2014) to 1.4 mg/l (taken 02 Nov 2014) and kappa chain was below 0.7 mg/l in both tests.
The free lambda in serum was increased from 157 mg/l (taken at 23 Sep 2014) to 737 mg/l (taken at 29 Oct 2014) and free kappa was 1.1mg/l in both tests.
We see that there is improvement in hemoglobin and protein level in urine, however the myeloma get worse. Why there is improvement of symptom but the myeloma get worse?
His doctor considering to change the treatment to Revlimid and dex and daratumumab (which in clinical trails) or to Revlimid and dex only.
Does anybody here start getting daratumumab? What is the experience of people with daratumumab in forum?
Best Regards
ALTERA
Forums
Re: Confusing response to treatment
Hi Altera:
You should definitely ask your father's myeloma specialist these good questions. Indeed you don't want to change treatments if he is responding to therapy. Can I ask why they think his myeloma is getting worse? Is it only because of the free light chain levels or does he have an MProtein that shows up by SPEP also? It is a bit unusual for the free lambda to drop in urine while increasing in the blood. You may want to ask if there has been a second blood test that confirmed these results. The International Myeloma Working Group criteria recommends that myeloma progression be confirmed by a second lab test, but sometimes this is overlooked.
You should definitely ask your father's myeloma specialist these good questions. Indeed you don't want to change treatments if he is responding to therapy. Can I ask why they think his myeloma is getting worse? Is it only because of the free light chain levels or does he have an MProtein that shows up by SPEP also? It is a bit unusual for the free lambda to drop in urine while increasing in the blood. You may want to ask if there has been a second blood test that confirmed these results. The International Myeloma Working Group criteria recommends that myeloma progression be confirmed by a second lab test, but sometimes this is overlooked.
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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: Confusing response to treatment
I was about to same the same thing as Tough Mom.
Also, does he have any specific abnormal cytogenetics (genetic mutations) associated with multiple myeloma? These can have an impact on how a person responds to a given treatment.
Lastly, is your father's doc a hematologist that specializes specifically in multiple myeloma? It's important that he be hooked up with a top specialist with this disease. If he is not, folks on this forum are happy to provide recommendations on institutions and/or specific doctors.
Also, does he have any specific abnormal cytogenetics (genetic mutations) associated with multiple myeloma? These can have an impact on how a person responds to a given treatment.
Lastly, is your father's doc a hematologist that specializes specifically in multiple myeloma? It's important that he be hooked up with a top specialist with this disease. If he is not, folks on this forum are happy to provide recommendations on institutions and/or specific doctors.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Confusing response to treatment
Tough Mom,
They think that myeloma is getting worse due to lambda increase in serum. There is no second blood test, but I think they will perform it, because his doctor wants to continue with same treatment 2 more weeks and then to decide what to do. I assume during this period of time they will perform additional test. I will consult with his myeloma specialist to perform the blood test again.
In addition, the protein level in blood is 8.4 g/dl, while the normal values are within 6.5 to 8.2 g/dl.
They think that myeloma is getting worse due to lambda increase in serum. There is no second blood test, but I think they will perform it, because his doctor wants to continue with same treatment 2 more weeks and then to decide what to do. I assume during this period of time they will perform additional test. I will consult with his myeloma specialist to perform the blood test again.
In addition, the protein level in blood is 8.4 g/dl, while the normal values are within 6.5 to 8.2 g/dl.
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Altera - When were you/they diagnosed?: 4 August 2014
- Age at diagnosis: 69
Re: Confusing response to treatment
Multibilly,
I know he did perform a genetic test. However, I haven't understood the results. I will look at them again. I think there are some genetic mutations.
Regarding the father's doc question, yes, my father's doctor is a multiple myeloma specialist.
I know he did perform a genetic test. However, I haven't understood the results. I will look at them again. I think there are some genetic mutations.
Regarding the father's doc question, yes, my father's doctor is a multiple myeloma specialist.
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Altera - When were you/they diagnosed?: 4 August 2014
- Age at diagnosis: 69
Re: Confusing response to treatment
The test results that have the information on the mutations can be really hard or a layman to interpret. Hopefully, there will be some summary sections that might highlight some of the key mutations. The Mayo's mSMART guidelines is a good place to look to understand the specific mutations that are of primary concern.
http://msmart.org/newly%20diagnosed%20myeloma.pdf
http://msmart.org/newly%20diagnosed%20myeloma.pdf
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Confusing response to treatment
Hello from sunny (its actually cold and gray) Seattle!
First of all, hematologist / oncologists often will use 2 or 3 different tests to measure the progress of myeloma patients, for example:
#1. The M-spike( SPEP)
#2. The serum free light chains
#3. 24 hour urine for Bence Jones proteins.
The M-spike is preferred to follow myeloma patients as long as it is at least 0.5 g/dL pre-treatment. Roughly 80% of patients have a measurable M-spike pretreatment. In those patients with little or no M-spike (hyposecretory or light chain myeloma) pretreatment, the serum free light chains must be used or 24 hour urine results for Bence Jones protein are used.
Absolute measurements of urine free light chains such as those you presented are still not used routinely for analysis of myeloma status because how to interpret them (as opposed to Bence Jones proteins) is not clear. Still, it appears that your father's urine free light chains have fallen.
The story you have presented is a little bit confusing but, based on the information at hand, I think it is possible your father may actually be responding, and here is why.
Another issue that does come up on occasion is that the laboratory running the free light chains switches to a different methodology and the units for the free light chain values can change unexpectedly from mg/L to mg/dL, or vice versa.
A bone marrow biopsy would settle this issue with certainty and perhaps that is the best route prior to abandoning his chemotherapy regimen.
I suggest that you
First of all, hematologist / oncologists often will use 2 or 3 different tests to measure the progress of myeloma patients, for example:
#1. The M-spike( SPEP)
#2. The serum free light chains
#3. 24 hour urine for Bence Jones proteins.
The M-spike is preferred to follow myeloma patients as long as it is at least 0.5 g/dL pre-treatment. Roughly 80% of patients have a measurable M-spike pretreatment. In those patients with little or no M-spike (hyposecretory or light chain myeloma) pretreatment, the serum free light chains must be used or 24 hour urine results for Bence Jones protein are used.
Absolute measurements of urine free light chains such as those you presented are still not used routinely for analysis of myeloma status because how to interpret them (as opposed to Bence Jones proteins) is not clear. Still, it appears that your father's urine free light chains have fallen.
The story you have presented is a little bit confusing but, based on the information at hand, I think it is possible your father may actually be responding, and here is why.
- He no longer needs blood transfusions. This probably means that the amount of myeloma in the marrow is reduced and the normal marrow components are returning to normal levels. This is a very important sign of response.
- The urine suggests that the free light chains are better.
Another issue that does come up on occasion is that the laboratory running the free light chains switches to a different methodology and the units for the free light chain values can change unexpectedly from mg/L to mg/dL, or vice versa.
A bone marrow biopsy would settle this issue with certainty and perhaps that is the best route prior to abandoning his chemotherapy regimen.
I suggest that you
- Find out what his M-spike(SPEP) levels are doing, and
- Repeat the serum free light chains to be certain they are truly rising, and
- Ask your oncologist if a bone marrow biopsy would be valuable to decide if the current therapy should be abandoned.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Confusing response to treatment
Thank you for your detailed response, Dr. Libby.
I don't know what was the M-spike levels before treatment, but I know that IgG was 272 mg/dl, IgA 3390 mg/dl, and IgM was <15.6 mg/dl at 23 September, 2014.
By the way, in your response you have mentioned units g/dl. It means gram per deciliter, am I right?
I think the idea to make bone morrow biopsy in order to decide if current therapy should be abandoned is great.
Thank you and Best Regards,
ALTERA
I don't know what was the M-spike levels before treatment, but I know that IgG was 272 mg/dl, IgA 3390 mg/dl, and IgM was <15.6 mg/dl at 23 September, 2014.
By the way, in your response you have mentioned units g/dl. It means gram per deciliter, am I right?
I think the idea to make bone morrow biopsy in order to decide if current therapy should be abandoned is great.
Thank you and Best Regards,
ALTERA
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Altera - When were you/they diagnosed?: 4 August 2014
- Age at diagnosis: 69
Re: Confusing response to treatment
Hello again ALTERA,
Yes the units for the M-spike (SPEP result) are in grams/deciliter.
Your father has IgA myeloma, that is why the total serum IgA is very elevated. Many hematologist / oncologists use the total immunoglobulin level of IgG or IgA rather than obtaining a serum protein electrophoresis (SPEP). His IgA level is clearly elevated.The normal level for serum IgA is 50 to 350 mg/dL so your father's is very high. What was the level pretreatment and what is the level now, one month after treatment ?
I would suggest using the serum total IgA level tested monthly rather than the free light chain level to decide if he is responding. I would also consider getting an SPEP monthly to follow his progress.There are some complexities to SPEP measurment in IgA myeloma, but these are not universal.
Another potentially valuable test would be the IgA Kappa / IgA Lambda Heavy / Light Chain assay which may not have the problems inherent in SPEP testing in IgA myeloma patients.
Yes the units for the M-spike (SPEP result) are in grams/deciliter.
Your father has IgA myeloma, that is why the total serum IgA is very elevated. Many hematologist / oncologists use the total immunoglobulin level of IgG or IgA rather than obtaining a serum protein electrophoresis (SPEP). His IgA level is clearly elevated.The normal level for serum IgA is 50 to 350 mg/dL so your father's is very high. What was the level pretreatment and what is the level now, one month after treatment ?
I would suggest using the serum total IgA level tested monthly rather than the free light chain level to decide if he is responding. I would also consider getting an SPEP monthly to follow his progress.There are some complexities to SPEP measurment in IgA myeloma, but these are not universal.
Another potentially valuable test would be the IgA Kappa / IgA Lambda Heavy / Light Chain assay which may not have the problems inherent in SPEP testing in IgA myeloma patients.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Confusing response to treatment
Thank you again, Dr. Edward Libby.
They did not performed more IgA test yet. I hope they will perform IgA test. I will consult with his doctor to perform IgA test, in order to see if my father is responding to treatment.
ALTERA
They did not performed more IgA test yet. I hope they will perform IgA test. I will consult with his doctor to perform IgA test, in order to see if my father is responding to treatment.
ALTERA
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Altera - When were you/they diagnosed?: 4 August 2014
- Age at diagnosis: 69
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