This week's poll asks about your type of myeloma -- or type of immunoglobulin your myeloma cells make.
A few clarifications:
This poll is for anyone who has been diagnosed with multiple myeloma, smoldering myeloma, or monoclonal gammopathy of undetermined significance (MGUS).
Second, if you are a caregiver or family member of someone with a myeloma-related disease, feel free to answer on their behalf.
Third, it is uncommon, but sometimes the type of immunoglobulin your myeloma cells make can change after treatment. If your type of immunoglobulin has changed since your diagnosis, please vote for the type of immunoglobulin your myeloma cells currently make and post a reply comment to describe the change.
As always, feel free to post additional thoughts, feedback, or comments in the space below. They can be very useful to other readers. In particular, if you select "Other," please describe your type of myeloma below.
Forums
Re: Weekly Poll - Type Of Immunoglobulin
My husband has been receiving 5 cycles of CDT for his IgM myeloma and so far had a very good partial response, that is his level of myeloma cells have dropped from 57 to 5 ( not sure if the unit of measurement is the same in the US as here in the UK.)
He is well and the myeloma was picked up incidentally at routine diabetic blood tests. He has no bone damage and despite only having one kidney, he lost one to kidney cancer 6 years ago, has excellent kidney function. He was symptom free at diagnosis and had only slight anaemia and raised calcium.
However the interesting point is that until 5 months ago he had been diagnosed with Waldenstroms Macroglobulinaemia, a type of lymphoma which expresses IgM. Apparently this is quite a common error and there are several papers written regarding the similarities and ways to differentiate based on cytogenetic tests.Ultimately the correct diagnosis was made via the second BMB due to two particular cytogenetic expressions- Cyclin D1 and another I can't recall. He had become quite ill at this time with a chest infection, his levels of the para protein were increasing as was his calcium and he had 80% bone marrow involvement.
His vg response to treatment has been really encouraging and he is due for ASCT in May.
I am highlighting this for two reasons- as IgM myeloma is pretty rare I'm interested to hear of others with the same condition and also because there are very few studies focusing on these rare types. Reports that have been produced seem to indicate poor health at presentation, poorer response to treatment and poorer prognosis. My husband clearly is not therefore typical of reported cases to date or is he- little has been published.
He is well and the myeloma was picked up incidentally at routine diabetic blood tests. He has no bone damage and despite only having one kidney, he lost one to kidney cancer 6 years ago, has excellent kidney function. He was symptom free at diagnosis and had only slight anaemia and raised calcium.
However the interesting point is that until 5 months ago he had been diagnosed with Waldenstroms Macroglobulinaemia, a type of lymphoma which expresses IgM. Apparently this is quite a common error and there are several papers written regarding the similarities and ways to differentiate based on cytogenetic tests.Ultimately the correct diagnosis was made via the second BMB due to two particular cytogenetic expressions- Cyclin D1 and another I can't recall. He had become quite ill at this time with a chest infection, his levels of the para protein were increasing as was his calcium and he had 80% bone marrow involvement.
His vg response to treatment has been really encouraging and he is due for ASCT in May.
I am highlighting this for two reasons- as IgM myeloma is pretty rare I'm interested to hear of others with the same condition and also because there are very few studies focusing on these rare types. Reports that have been produced seem to indicate poor health at presentation, poorer response to treatment and poorer prognosis. My husband clearly is not therefore typical of reported cases to date or is he- little has been published.
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Tallulah55
Re: Weekly Poll - Type Of Immunoglobulin
Thank you, Beacon Staff, for posting this poll. I am IgA Kappa and was very distressed when my first doctor told me IgA is faster to progress and harder to treat. But the second doctor I saw said that margin is narrowing and there really isn't a difference. I hope that research/treatments are aimed at ALL types and often wonder if different treatment plans are needed for each individual type. Thank you again!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Weekly Poll - Type Of Immunoglobulin
Hi Garden Girl
I am IGA Lambda. I was diagnosed 3 years ago. I immediately started 6 cycles of CTD and achieved a stringent compete response. I have been treatment free for 2.5 years.
I am IGA Lambda. I was diagnosed 3 years ago. I immediately started 6 cycles of CTD and achieved a stringent compete response. I have been treatment free for 2.5 years.
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AliceNorth
Re: Weekly Poll - Type Of Immunoglobulin
Hi GardenGirl,
I am IgA kappa also, and today is the 8th anniversary of my diagnosis. I had a transplant 7 years ago, and have been in complete response, with no treatment, from then until just a few months ago: now I'm in "near complete response" and taking Revlimid, and still doing well. So don't pay too much attention to that doctor saying that IgA kappa is necessarily "bad"!
I am IgA kappa also, and today is the 8th anniversary of my diagnosis. I had a transplant 7 years ago, and have been in complete response, with no treatment, from then until just a few months ago: now I'm in "near complete response" and taking Revlimid, and still doing well. So don't pay too much attention to that doctor saying that IgA kappa is necessarily "bad"!
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Trevor
Re: Weekly Poll - Type Of Immunoglobulin
Thank you, Alice and Trevor! It's so nice to know I'm not alone!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Weekly Poll - Type Of Immunoglobulin
May I please ask the significance behind this poll? What is the significance of being IgA versus IgG, Is it a prognostic challenge? What can we gain from the information accumulated in this poll as patients? Thank you.
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1Anonymous
Re: Weekly Poll - Type Of Immunoglobulin
Thanks for asking, 1Anonymous. Multiple myeloma cells overproduce a single type of immunoglobulin (also known as monoclonal protein or M-spike). Therefore some people with myeloma have an IgG M-spike while others have an IgA M-spike and others have IgD, IgE, or IgM. For other patients, their myeloma cells only produce the light-chain part of the immunoglobin. And for a small percentage of people, their myeloma cells only produce very small or even immeasurable amounts of immunoglobulin.
As you might imagine, these differences may lead to other differences in the disease.
Patients with one type of immunoglobulin may respond to treatment differently and have a different prognosis than patients with another type of immunoglobulin. This has been shown to be true: https://myelomabeacon.org/news/2011/01/12/the-majority-of-rare-myelomas-are-associated-with-poorer-survival-than-common-myelomas/
Additionally, patients with one type of immunoglobulin may experience complications that differ from those of patients with another type of immunoglobulin, such as bone disease, kidney disease, etc. For example, people with light chain myeloma are more often affected by myeloma-related kidney disease (because the light chains clog the kidneys and impair their function), whereas those with nonsecretary myeloma rarely are affected by kidney disease (since their myeloma cells don't secrete protein, their kidneys are unaffected).
Therefore, the results of this poll are interesting because they let us better understand how common the different types of myeloma are. The comment thread also allows patients to connect with others whose myeloma cells produce the same type of immunoglobulin, to ask questions, and to discuss how their type of myeloma has impacted their treatment and survival so far.
As you might imagine, these differences may lead to other differences in the disease.
Patients with one type of immunoglobulin may respond to treatment differently and have a different prognosis than patients with another type of immunoglobulin. This has been shown to be true: https://myelomabeacon.org/news/2011/01/12/the-majority-of-rare-myelomas-are-associated-with-poorer-survival-than-common-myelomas/
Additionally, patients with one type of immunoglobulin may experience complications that differ from those of patients with another type of immunoglobulin, such as bone disease, kidney disease, etc. For example, people with light chain myeloma are more often affected by myeloma-related kidney disease (because the light chains clog the kidneys and impair their function), whereas those with nonsecretary myeloma rarely are affected by kidney disease (since their myeloma cells don't secrete protein, their kidneys are unaffected).
Therefore, the results of this poll are interesting because they let us better understand how common the different types of myeloma are. The comment thread also allows patients to connect with others whose myeloma cells produce the same type of immunoglobulin, to ask questions, and to discuss how their type of myeloma has impacted their treatment and survival so far.
Re: Weekly Poll - Type Of Immunoglobulin
Hi Myeloma Beacon Staff,
Thanks for that great explanation about this poll. I have a question, perhaps you can offer some links?
Related to this portion of your comment:
<"Additionally, patients with one type of immunoglobulin may experience complications that differ from those of patients with another type of immunoglobulin, such as bone disease, kidney disease, etc. For example, people with light chain myeloma are more often affected by myeloma-related kidney disease (because the light chains clog the kidneys and impair their function), whereas those with nonsecretary myeloma rarely are affected by kidney disease (since their myeloma cells don't secrete protein, their kidneys are unaffected).">
Do you have any links to articles which would detail which type of immunoglobulin heavy chain might be more prone to bone disease. And, would the light chain partner make a difference? i.e, IgG kappa verses IgG lambda ?
Thanks so much !
Dana H
Thanks for that great explanation about this poll. I have a question, perhaps you can offer some links?
Related to this portion of your comment:
<"Additionally, patients with one type of immunoglobulin may experience complications that differ from those of patients with another type of immunoglobulin, such as bone disease, kidney disease, etc. For example, people with light chain myeloma are more often affected by myeloma-related kidney disease (because the light chains clog the kidneys and impair their function), whereas those with nonsecretary myeloma rarely are affected by kidney disease (since their myeloma cells don't secrete protein, their kidneys are unaffected).">
Do you have any links to articles which would detail which type of immunoglobulin heavy chain might be more prone to bone disease. And, would the light chain partner make a difference? i.e, IgG kappa verses IgG lambda ?
Thanks so much !
Dana H
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: Weekly Poll - Type Of Immunoglobulin
Hi Dana, the link provided in our above posting (https://myelomabeacon.org/news/2011/01/12/the-majority-of-rare-myelomas-are-associated-with-poorer-survival-than-common-myelomas/) states that patients with IgD myeloma or nonsecretory myeloma tend to have more bone fractures than patients with one of the other types of myeloma.
We're not familiar with any studies investigating whether the light chain partner makes a differences.
We're not familiar with any studies investigating whether the light chain partner makes a differences.
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