It seems I am always asking questions so please be patient with me and my lack of knowledge.
I was doing some research on myeloma and was looking over my husband's flow sheet that he got from his oncologist on his last visit to get results of the PET scan, which as I have posted (no lesions)
Looking over his sheets, could someone please explain to me these results?
Our oncologist says my husband is basically on the border line of smoldering and treatment. I believe I explained this before that one number was a bit higher (his M spike of 1.55 g/dL), but the doctor said that the other numbers did not justify the jump, that the test is a complicated one and could have been a mistake in the lab. So we are doing more blood work on the 19th of this month and getting results on the 24th. If the number is the same, we are going to MD Anderson.
Our oncologist also stated that he uses the International Staging System so when I researched this I again was totally confused!
According to the ISS staging, the Stage 1 serum beta 2 microglobulin is less then 3.5; my husbands was 5.81. If I am reading it correctly and on the ISS albumin level is above 3.5, well my husbands is 4.50. Other numbers I copied off his flow sheet.
WBC 8.2
RBC 4.05
HGB 13.5
HCT 40.0
MCU 98.8
MCH 33.3
MCHC 33.8
RDW 52.5
Platelets 282
Monocyte 9.10
Creatinine 2.2
Protein 8.2
Calcium 9.4
Kappa / Lambda Free Light Chain Ratio 2.12
These are some of the numbers I copied, I have to basically try to sneak these questions. My husband is so positive and does not want me to do any more research on this, but I believe knowledge is power.
Can anyone help?
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Re: Still waiting
Mildred,
This is confusing, isn't it?
ISS staging really isn't useful for distinguishing between MGUS, smoldering multiple myeloma, and symptomatic multiple myeloma (see article below). Understanding when one is symptomatic is crucial for understanding when to begin treatment.
In the USA, the way one typically distinguishes between MGUS, smoldering myeloma and symptomatic multiple myeloma is by using the CRAB criteria and plasma cell % (and some of the new criteria I mention below). As I recall, your husband had a 10% plasma cell level from his BMB. So, that puts him in at least the smoldering camp.
Definition of SMM:
- Monoclonal plasma cells in the bone marrow > 10% and/or presence of a biopsy-proven plasmacytoma
- Monoclonal protein present in the serum and/or urine
In order to be classified as symptomatic, you would need to meet the following:
One or more of the following CRAB conditions:
[C] Calcium elevation in the blood; serum calcium >10.5 mg/l or upper limit of normal
[R] Renal insufficiency; serum creatinine > 2 mg/dl
[A] Anemia; hemoglobin < 10 g/dl or 2 g < normal
[B] Lytic bone lesions or osteoporosis
And, now based on the IMWG's new guidelines, meeting any of the following criteria would also classify one as being symptomatic:
"... no written criteria can substitute clinical judgment. In many cases, physicians will need to continue to use judgment in making decisions on which patients need immediate therapy, and in deciding when continued observation will be in the patients’ best interests".
Regarding ISS staging and its pros and cons, I like to refer to these comments:
"Limitations of the ISS
The ISS has many advantages. It allows outcome in clinical trials to be compared with each other and is more reproducible than the Durie–Salmon system. However, the ISS also has many limitations. It is not useful unless the diagnosis of myeloma has already been made. The ISS has no role in MGUS, SMM or other related plasma cell disorders. It cannot be used to distinguish MGUS and SMM from myeloma. Stage III ISS is a composite group comprised of patients in whom the β2M is elevated because of tumor burden as well as patients in whom the elevation is due to renal failure. Thus, the ISS cannot be used for therapeutic risk stratification, and does not provide a good estimate of tumor burden. Finally, the prognostic role of the ISS in the era of new drugs is not established. It is possible that the ISS may not retain prognostic significance in the era of new drugs."
RA Kyle and SV Rajkumar, "Criteria for diagnosis, staging, risk stratification and response assessment of multiple myeloma," Leukemia, 2009 (full text).
This is confusing, isn't it?
ISS staging really isn't useful for distinguishing between MGUS, smoldering multiple myeloma, and symptomatic multiple myeloma (see article below). Understanding when one is symptomatic is crucial for understanding when to begin treatment.
In the USA, the way one typically distinguishes between MGUS, smoldering myeloma and symptomatic multiple myeloma is by using the CRAB criteria and plasma cell % (and some of the new criteria I mention below). As I recall, your husband had a 10% plasma cell level from his BMB. So, that puts him in at least the smoldering camp.
Definition of SMM:
- Monoclonal plasma cells in the bone marrow > 10% and/or presence of a biopsy-proven plasmacytoma
- Monoclonal protein present in the serum and/or urine
In order to be classified as symptomatic, you would need to meet the following:
One or more of the following CRAB conditions:
[C] Calcium elevation in the blood; serum calcium >10.5 mg/l or upper limit of normal
[R] Renal insufficiency; serum creatinine > 2 mg/dl
[A] Anemia; hemoglobin < 10 g/dl or 2 g < normal
[B] Lytic bone lesions or osteoporosis
And, now based on the IMWG's new guidelines, meeting any of the following criteria would also classify one as being symptomatic:
- Sixty percent or greater clonal plasma cells on bone marrow examination
- Serum involved / uninvolved free light chain ratio of 100 or greater, provided the absolute level of the involved free light chain is at least 100 mg/L (a patient’s “involved” free light chain – either kappa or lambda – is the one that is above the normal reference range; the uninvolved light chain is the one that typically is in, or below, the normal range)
- More than one focal lesion on MRI that is at least 5 multiple myeloma or greater in size
"... no written criteria can substitute clinical judgment. In many cases, physicians will need to continue to use judgment in making decisions on which patients need immediate therapy, and in deciding when continued observation will be in the patients’ best interests".
Regarding ISS staging and its pros and cons, I like to refer to these comments:
"Limitations of the ISS
The ISS has many advantages. It allows outcome in clinical trials to be compared with each other and is more reproducible than the Durie–Salmon system. However, the ISS also has many limitations. It is not useful unless the diagnosis of myeloma has already been made. The ISS has no role in MGUS, SMM or other related plasma cell disorders. It cannot be used to distinguish MGUS and SMM from myeloma. Stage III ISS is a composite group comprised of patients in whom the β2M is elevated because of tumor burden as well as patients in whom the elevation is due to renal failure. Thus, the ISS cannot be used for therapeutic risk stratification, and does not provide a good estimate of tumor burden. Finally, the prognostic role of the ISS in the era of new drugs is not established. It is possible that the ISS may not retain prognostic significance in the era of new drugs."
RA Kyle and SV Rajkumar, "Criteria for diagnosis, staging, risk stratification and response assessment of multiple myeloma," Leukemia, 2009 (full text).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Still waiting
Confusing?? Oh yes, very , especially for a pea brain such as I!! I actually do believe that we will be going to MD Anderson in Houston and I appreciate our oncologist in being completely honest with us in his decision and his "not letting his ego" get in the way, by asking us to get a second opinion at MD Anderson since he says my husband is such a borderline case to him.
My husband has no symptoms, actually went duck hunting this weekend in 32 degree weather and had a blast. Of course I asked him how did he feel when he got home and his response "great". My husband is 69 and basically in good health for a man his age and has such a positive attitude.
Thank you so so so very much for answering all my questions. I am just fascinated with your knowledge of this. Thank You again Billy, I will keep you posted on our next visit.
My husband has no symptoms, actually went duck hunting this weekend in 32 degree weather and had a blast. Of course I asked him how did he feel when he got home and his response "great". My husband is 69 and basically in good health for a man his age and has such a positive attitude.
Thank you so so so very much for answering all my questions. I am just fascinated with your knowledge of this. Thank You again Billy, I will keep you posted on our next visit.
Re: Still waiting
Hi Mildred. Please don't think of yourself as a pea brain! Myeloma is confusing. You can feel fine and still have it, as you've noted with your husband. Think of it as a family of diseases, with the definition in a state of flux at the moment. In a way, that's good, because it reflects the ever increasing state of knowledge about myeloma, its genetics, and its variability.
Keep asking questions and remember, none of those questions are stupid.
Keep asking questions and remember, none of those questions are stupid.
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Still waiting
Mildred,
You are on the right track in two important areas. One is your decision to go to MD Anderson and the second is your statement "knowledge is power".
Myeloma is complicated and confusing and needs the management of a myeloma specialist in a setting like MD Anderson. You are fortunate that your local oncologist has suggested a second opinion and did not let his ego get in the way. Learning everything you possibly can about myeloma is necessary for you to help your doctor manage the disease and its treatment.
Currently your husband is asymptomatic, and it is difficult for him to even accept the fact that he has myeloma. Take advantage of every available opportunity to educate yourself about myeloma and its treatment.
There are many resources available in the myeloma community that are willing to help. And there are no stupid questions. Keep on asking, Mildred. People here at The Beacon are always willing to help.
You are on the right track in two important areas. One is your decision to go to MD Anderson and the second is your statement "knowledge is power".
Myeloma is complicated and confusing and needs the management of a myeloma specialist in a setting like MD Anderson. You are fortunate that your local oncologist has suggested a second opinion and did not let his ego get in the way. Learning everything you possibly can about myeloma is necessary for you to help your doctor manage the disease and its treatment.
Currently your husband is asymptomatic, and it is difficult for him to even accept the fact that he has myeloma. Take advantage of every available opportunity to educate yourself about myeloma and its treatment.
There are many resources available in the myeloma community that are willing to help. And there are no stupid questions. Keep on asking, Mildred. People here at The Beacon are always willing to help.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
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