My father was just recently diagnosed with multiple myeloma. Is there staging with multiple myeloma? I asked my dad's doctor what stage he is in, and his doctor said there is no staging with multiple myeloma and that it is stage 4 because there is no cure.
I have read multiple things on the internet that there is staging, so now I am confused.
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Re: Is there staging with multiple myeloma?
Hi Lisa,
Welcome to the forum but sorry to hear about your dad's diagnosis.
First off, from what you stated here, that seems like a pretty callous thing for your dad's doctor to say. Secondly, it simply isn't true. But thirdly and probably most importantly, staging in myeloma doesn't really matter that much and won't necessarily impact how your dad will respond to treatment.
You can find the recently revised ISS staging criteria for myeloma here (see Table 1):
Palumbo, A., et al, "Revised International Staging System for Multiple Myeloma: A Report From International Myeloma Working Group," Journal of Clinical Oncology, September 10, 2015 (full text of article)
Any myeloma specialist would be familiar with this staging criteria.
In any case, I would recommend that your dad find a myeloma specialist to work with him. If you let us know what city he is in, folks on this forum can likely make some recommendations on treatment centers with myeloma specialists in his area.
Best of luck to you and your dad.
Welcome to the forum but sorry to hear about your dad's diagnosis.
First off, from what you stated here, that seems like a pretty callous thing for your dad's doctor to say. Secondly, it simply isn't true. But thirdly and probably most importantly, staging in myeloma doesn't really matter that much and won't necessarily impact how your dad will respond to treatment.
You can find the recently revised ISS staging criteria for myeloma here (see Table 1):
Palumbo, A., et al, "Revised International Staging System for Multiple Myeloma: A Report From International Myeloma Working Group," Journal of Clinical Oncology, September 10, 2015 (full text of article)
Any myeloma specialist would be familiar with this staging criteria.
In any case, I would recommend that your dad find a myeloma specialist to work with him. If you let us know what city he is in, folks on this forum can likely make some recommendations on treatment centers with myeloma specialists in his area.
Best of luck to you and your dad.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is there staging with multiple myeloma?
Hi Lisa,
I concur with Multibilly that your doctor may not be knowledgeable enough about myeloma. There are many treatments available now, and for most patients, help can be given. But you need to be talking with a doctor who knows about the whole scope of that. How was the myeloma diagnosed, and are you meeting with a hematological oncologist? It would help to have more information here, and also the suggestion of stating your city and country could help.
I concur with Multibilly that your doctor may not be knowledgeable enough about myeloma. There are many treatments available now, and for most patients, help can be given. But you need to be talking with a doctor who knows about the whole scope of that. How was the myeloma diagnosed, and are you meeting with a hematological oncologist? It would help to have more information here, and also the suggestion of stating your city and country could help.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Is there staging with multiple myeloma?
Hi Lisa,
Just to add a bit to Multibilly's helpful answer, your father's doctor may have been trying to say that staging systems are not widely used when it comes to multiple myeloma. Although many doctors will tell their myeloma patients that they have, for example, Stage 2 disease, this doesn't mean as much as it does with other cancers, where the disease stage often plays a key role in determining what treatment a patient is prescribed.
With multiple myeloma, the factors that in the U.S. typically affect the treatment a newly diagnosed patient receives are
The staging system that is most often used in the U.S. when you hear that a myeloma patient is "Stage 1" or "Stage 3" is the International Staging System, originally published in 2005:
Greipp, PR, et al, "International Staging System for Multiple Myeloma," Journal of Clinical Oncology, May 20, 2005 (full text of article)
This system does not make use of chromosomal abnormality information.
In some countries, the older Durie-Salmon system is still frequently used.
The Revised ISS that Multibilly mentioned is newer and does make use of chromosomal abnormality ("cytogenetic") information, but my sense is that it is not as widely used when doctors tell patients what stage they are.
If you are in the U.S. and looking for a treatment center with myeloma specialists, you probably will want to check out the Beacon's list of multiple myeloma treatment centers.
If you are outside the U.S., this post has a list of specialists who are part of the International Myeloma Working Group.
Personally, unless your father's health is precarious, I would not stress right now about getting him to a specialist. It will be fine to seek one out and schedule an appointment for sometime in a month or two, but you shouldn't feel rushed unless what he is prescribed seems very different from you see mentioned here in the forum in the posts of other patients who have started treatment recently. (For the U.S., for example, treatment is very commonly Revlimid, Velcade, and dexamethasone, or "RVD", or either "Rd" or "Vd" for patients who are more frail.)
Good luck!
Just to add a bit to Multibilly's helpful answer, your father's doctor may have been trying to say that staging systems are not widely used when it comes to multiple myeloma. Although many doctors will tell their myeloma patients that they have, for example, Stage 2 disease, this doesn't mean as much as it does with other cancers, where the disease stage often plays a key role in determining what treatment a patient is prescribed.
With multiple myeloma, the factors that in the U.S. typically affect the treatment a newly diagnosed patient receives are
- Whether or not the patient has high-risk chromosomal abnormalities as determined by FISH testing of myeloma cells from the patient's bone marrow
- The patient's general health (or lack thereof)
The staging system that is most often used in the U.S. when you hear that a myeloma patient is "Stage 1" or "Stage 3" is the International Staging System, originally published in 2005:
Greipp, PR, et al, "International Staging System for Multiple Myeloma," Journal of Clinical Oncology, May 20, 2005 (full text of article)
This system does not make use of chromosomal abnormality information.
In some countries, the older Durie-Salmon system is still frequently used.
The Revised ISS that Multibilly mentioned is newer and does make use of chromosomal abnormality ("cytogenetic") information, but my sense is that it is not as widely used when doctors tell patients what stage they are.
If you are in the U.S. and looking for a treatment center with myeloma specialists, you probably will want to check out the Beacon's list of multiple myeloma treatment centers.
If you are outside the U.S., this post has a list of specialists who are part of the International Myeloma Working Group.
Personally, unless your father's health is precarious, I would not stress right now about getting him to a specialist. It will be fine to seek one out and schedule an appointment for sometime in a month or two, but you shouldn't feel rushed unless what he is prescribed seems very different from you see mentioned here in the forum in the posts of other patients who have started treatment recently. (For the U.S., for example, treatment is very commonly Revlimid, Velcade, and dexamethasone, or "RVD", or either "Rd" or "Vd" for patients who are more frail.)
Good luck!
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