I read so many articles that conflict on risk status that I have no idea what to believe!
My husband has IgA myeloma which has been said to be more aggressive by some doctors, but others have said that the new meds make the type not so much a risk issue. He is young (44), which has been said to be good by some, bad by others.
He responded really well to his RVD cycle and was in VGPR by the middle of his 2nd cycle. I have read this could be good, or it could be a marker for high risk. His LDH was normal, his beta macroglobulin was below 3.5. These sound good.
His first BMB had normal cytogenetic profile with no chromosomal abnormalities detected by FISH. He is in CR for 9 months following an auto transplant. He is on maintenance Revlimid, which is affecting his quality of life, and its hard for us to figure out whether or not his risk level is worth the impact on his QOL?
If we could clearly tell if he were high risk or low risk I think we could make a better decision?
Any ideas on how to get a definitive answer on risk?
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: How to determine risk status?
Hi Blair,
The two most commonly used risk classification systems in the U.S. are the recently updated system from the International Myeloma Working Group (IMWG), which is described in this Beacon article,
"Experts Publish Consensus Risk Classification For Multiple Myeloma," The Myeloma Beacon, September 13, 2013.
and the Mayo Clinic's classification, which you can find described in this document:
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
Both of these classifications are focused on newly diagnosed patients. This is because there is particularly a need for classifying the risk of such patients, since it is not yet known how they will respond to treatment.
There is not, to our knowledge, an IMWG risk classification for relapsed myeloma patients. The Mayo Clinic does have one, however, and you can find it in this document:
http://www.msmart.org/Relapsed%20Myeloma.pdf
As you will see, the key variable that plays a role in these classification systems is a patient's chromosomal abnormalities.
We know that these documents don't entirely answer your question, but we wanted to get them into the discussion as references that might be useful as the discussion continues.
The two most commonly used risk classification systems in the U.S. are the recently updated system from the International Myeloma Working Group (IMWG), which is described in this Beacon article,
"Experts Publish Consensus Risk Classification For Multiple Myeloma," The Myeloma Beacon, September 13, 2013.
and the Mayo Clinic's classification, which you can find described in this document:
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
Both of these classifications are focused on newly diagnosed patients. This is because there is particularly a need for classifying the risk of such patients, since it is not yet known how they will respond to treatment.
There is not, to our knowledge, an IMWG risk classification for relapsed myeloma patients. The Mayo Clinic does have one, however, and you can find it in this document:
http://www.msmart.org/Relapsed%20Myeloma.pdf
As you will see, the key variable that plays a role in these classification systems is a patient's chromosomal abnormalities.
We know that these documents don't entirely answer your question, but we wanted to get them into the discussion as references that might be useful as the discussion continues.
Re: How to determine risk status?
Dear blair 77,
The Beacon Staff post above does share guidelines we use for determining high vs low risk.
To answer some of your specific questions:
Regarding the quality of life (QOL) issues, these should be discussed with your physician about how to manage those, be it with lower dose Revlimid or a different dosing schedule, adding in breaks in therapy, or addition of other medications to improve QOL.
All the best.
The Beacon Staff post above does share guidelines we use for determining high vs low risk.
To answer some of your specific questions:
- There is currently no strong consistent data that IgA is more aggressive once one takes into account the separate influence of a patient's cytogenetics (chromosomal abnormalities).
- Age does not play a role in high vs low risk or less aggressive disease. Younger age would suggest fewer other medical conditions and better ability to tolerate therapy.
- RVD is very active and early response to such therapy is not a marker for high risk.
- The low LDH level, ISS stage 1, and normal cytogenetics do support low risk disease.
- The CR is great news and I agree with continuous Revlimid maintenance.
Regarding the quality of life (QOL) issues, these should be discussed with your physician about how to manage those, be it with lower dose Revlimid or a different dosing schedule, adding in breaks in therapy, or addition of other medications to improve QOL.
All the best.
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Dr. Jatin Shah - Name: Jatin Shah, M.D.
Beacon Medical Advisor
Re: How to determine risk status?
Thank you for addressing these questions and I feel we are in a better place to make decisions.
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
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