Hello all,
My father was diagnosed with multiple myeloma around two weeks ago. He was told by his doctor that he was "between MGUS and Stage 1", though I don't have a good grasp of what that means.
Due to being overseas until today, I am preparing to meet his doctor for the first time. Are there any questions in particular that I should ask?
I am 19 and still expect my father to live a long, healthy life. He exercises daily and controls his diabetes well. However, initial research has me very worried about the situation.
Thanks for any help in advance!
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6 posts
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Re: What should I know & ask?
Thitythree,
Sorry to hear of your father's diagnosis. Nobody wants to be a part of our "club".
However, you have reached a great website that will give you good information. It can be overwhelming, so I would suggest starting with the attached link to the International Myeloma Foundations "Patient Handbook". It will give you enough information to go into the meeting informed so that you can and your father can ask informed questions. The very first page gives you 10 steps to better care. The booklet then goes through those steps sequentially.
http://myeloma.org/pdfs/Patient_Handbook_2013.pdf
Good luck
Ron
Sorry to hear of your father's diagnosis. Nobody wants to be a part of our "club".
However, you have reached a great website that will give you good information. It can be overwhelming, so I would suggest starting with the attached link to the International Myeloma Foundations "Patient Handbook". It will give you enough information to go into the meeting informed so that you can and your father can ask informed questions. The very first page gives you 10 steps to better care. The booklet then goes through those steps sequentially.
http://myeloma.org/pdfs/Patient_Handbook_2013.pdf
Good luck
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: What should I know & ask?
Hi Thirtythree,
Welcome to the forum!
It sounds like your Dad may just have MGUS or what is known as smoldering multiple myeloma. Is your dad in the USA or elsewhere (it's a little strange to me to hear that somebody may be "between "MGUS and Stage 1"). I'm going to also guess that they haven't run all the tests yet (bone marrow biopsy, xrays, etc), which is why there isn't a definitive diagnosis yet?
Ron pointed you to a really good place to begin understanding this disease. Note that the definition of smoldering multiple myeloma also just recently changed this week. So, once you read and understand the handbook that Ron pointed you to, you might want to also look at this article, especially if you think your Dad might be smoldering:
Vincent Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
This is also a helpful set of comments from the Beacon staff if your Dad does end up being MGUS or smoldering. I'll just quote from that posting for the rest of this post:
Welcome to the forum!
It sounds like your Dad may just have MGUS or what is known as smoldering multiple myeloma. Is your dad in the USA or elsewhere (it's a little strange to me to hear that somebody may be "between "MGUS and Stage 1"). I'm going to also guess that they haven't run all the tests yet (bone marrow biopsy, xrays, etc), which is why there isn't a definitive diagnosis yet?
Ron pointed you to a really good place to begin understanding this disease. Note that the definition of smoldering multiple myeloma also just recently changed this week. So, once you read and understand the handbook that Ron pointed you to, you might want to also look at this article, especially if you think your Dad might be smoldering:
Vincent Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
This is also a helpful set of comments from the Beacon staff if your Dad does end up being MGUS or smoldering. I'll just quote from that posting for the rest of this post:
There are a couple of things you probably should do now to educate yourself better about smoldering myeloma.
First, you should understand the difference between smoldering myeloma, or asymptomatic myeloma (as it increasingly is being called), and multiple myeloma (symptomatic myeloma) and an earlier stage of myeloma known as MGUS. The section of the Wikipedia article on myeloma that covers the diagnostic criteria for the disease gives a somewhat technical, but still readable, overview of the differences between the three diagnoses:
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
Second, you will need to get familiar with the different laboratory tests and imaging methods that will be used to track your disease. Key results that you'll be using to track your disease are likely to be your paraprotein level (M-spike, in U.S. parlance), your free light chain levels, and also your immunoglobulin levels. Calcium, hemoglobin, platelet, creatinine, and perhaps BUN levels from blood tests will also be useful to see if you're showing any signs of the myeloma affecting your organs. Your plasma cell percentage from bone marrow biopsies is also a key variable to know about.
Whether you track these numbers in something like a spreadsheet is up to you. Some people do, some don't. Most people find it useful to at least keep all their results in a single binder or set of files.
If you report any of your test results here, please include units (and reference / normal ranges), as different units are used in different countries and, sometimes, even by different laboratories.
Third, you should find out what type of myeloma you have, in terms of the "involved" immunoglobulin (IgG, IgA, etc.) and the involved light chain (kappa or lambda). This will be good to know when looking at your immunoglobulin test results and your free light chain results.
Fourth, you should find out whether testing already has been done to determine what, if any, chromosomal abnormalities your myeloma cells have. This test would have been done using a sample from your bone marrow biopsy. Also, have you had an MRI done to see if you have any "focal lesions" in your skeleton? The presence of focal lesions and certain chromosomal abnormalities can indicate a higher likelihood of progression to symptomatic disease, although nothing is ever guaranteed.
(You almost certainly had an x-ray skeletal survey, since it is relatively standard when determining whether a myeloma patient has symptomatic or asymptomatic disease. X-rays tell you more about the outer, hard surface of the bone, while MRIs will tell you more about what's going on in the bone marrow.)
This brings us to our final point, which is to understand that every myeloma patient is different. Myeloma specialists often divide patients into different "risk" categories. In smoldering myeloma, there are various ways to do this based, as we just mentioned, on lab results and imaging results. But that's just the tip of the iceberg, in that it just starts to capture how different the disease can be from one patient to another.
This is one reason why you often will hear from people here in the forum that it's important to be seen by, or be under the care of, a myeloma specialist. But it's important shouldn't be overlooked, because a a myeloma specialist will know better what to look for when it comes to your disease, and probably help you learn more about it as well.
The smoldering (and MGUS forums) have a lot of discussions that you probably will find valuable. There ares also many articles here on the site that are about smoldering myeloma. See this link for an easy way to find them:
https://myelomabeacon.org/tag/smoldering-multiple-myeloma/
We're certain that many of the other forum participants will have additional advice and support for you. We're also sure we probably missed an important piece of advice (or two or three!). We hope, however, that this posting serves as a good starting point for you.
Good luck ... and, again, welcome!
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: What should I know & ask?
Hi Thirtythree. Welcome to the Beacon. It's a great place to post questions and do research.
I'm sorry that your dad has myeloma. My daughter was a little older than you when we learned that I had it. Like you, she expects me to be around a long time -- and I plan on doing so.
In addition to the information Ron and Multibilly provided, we should add that some of what you will read on other, more general cancer sites is out of date. When I started researching five years ago, other sites led me to believe my life expectancy was a couple of years. Those stats are based on older populations and outdated information based on the old treatment regimens.
Just in the past five years, we have four new drugs, and there are 50 in the pipeline. The research is amazing, especially at the genetic level. And researchers are learning more every day about genetic swaps and which drugs work better depending on which type of myeloma the patient has.
So, bottom line, this is scary, but there are good treatments, and you and your dad can have many good years to come.
Dana A
I'm sorry that your dad has myeloma. My daughter was a little older than you when we learned that I had it. Like you, she expects me to be around a long time -- and I plan on doing so.
In addition to the information Ron and Multibilly provided, we should add that some of what you will read on other, more general cancer sites is out of date. When I started researching five years ago, other sites led me to believe my life expectancy was a couple of years. Those stats are based on older populations and outdated information based on the old treatment regimens.
Just in the past five years, we have four new drugs, and there are 50 in the pipeline. The research is amazing, especially at the genetic level. And researchers are learning more every day about genetic swaps and which drugs work better depending on which type of myeloma the patient has.
So, bottom line, this is scary, but there are good treatments, and you and your dad can have many good years to come.
Dana A
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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: What should I know & ask?
Thank you all for the long, thoughtful replies!
I am planning on asking the doctor about this, but my mother tells me my father was diagnosed based on a blood test. From what I know so far, it is an IgA multiple myeloma. We are in Singapore. Fortunately, my father managed to find a great doctor who's knowledgeable about multiple myeloma and stem cells. I will have to meet him before I can make any judgements, though..
Thank you for the links Ron and Multibilly, I will begin reading them ASAP!
darnold, thank you for the reassurance. The research and medical advances related to multiple myeloma is astounding from what I see so far!
I am planning on asking the doctor about this, but my mother tells me my father was diagnosed based on a blood test. From what I know so far, it is an IgA multiple myeloma. We are in Singapore. Fortunately, my father managed to find a great doctor who's knowledgeable about multiple myeloma and stem cells. I will have to meet him before I can make any judgements, though..
Thank you for the links Ron and Multibilly, I will begin reading them ASAP!
darnold, thank you for the reassurance. The research and medical advances related to multiple myeloma is astounding from what I see so far!
Re: What should I know & ask?
Thirtythree-
You've received some really thorough responses to your original post. One of the things that I would suggest is that you not get hung up on what stage your father is in, i.e., Stage I, II, III. These are pretty much useless in the case of multiple myeloma. As one specialist said at the support group that I attend, "The Stage I, II, III classification isn't helpful in myeloma. Because you can progress from stage I to III very quickly in some cases."
What is more important is to pay attention to the new criteria that were published this week from the International Myeloma Working Group that uses the CRAB system, which stands for elevated calcium in the blood, renal failure, anemia and bone involvement and 3 new criteria. So, MGUS (non-symptomatic myeloma), smoldering myeloma, and symptomatic myeloma are the terms that are most commonly used.
When your father has had more extensive blood work, urine work, bone marrow biopsy and skeletal x-rays followed by MRI or PET/CT, there will be a clearer picture of what is going on with your father and whether he should begin treatment, or not. Since your parents are in Singapore, I would suggest that they look for a myeloma specialist there for a second opinion. It is important to have a specialist on the treatment team even if a local oncologist is the one who is providing the regular treatment. This is because diagnosis and treatment criteria change fairly quickly these days in myeloma. A general oncologist isn't likely to be up to date in these changes. Most specialists are more than willing to coordinate care through a local oncologist.
Also, when reading about myeloma on the Internet, look at the date that the information was published. If it is more than 2-3 years old, it is really out of date.
All the best to your father and hopefully he will be around for you for many years to come. There are a few people in my support group who have been living with myeloma for over 20 years. So, it isn't an unreasonable thing to hope for.
Nancy in Phila
You've received some really thorough responses to your original post. One of the things that I would suggest is that you not get hung up on what stage your father is in, i.e., Stage I, II, III. These are pretty much useless in the case of multiple myeloma. As one specialist said at the support group that I attend, "The Stage I, II, III classification isn't helpful in myeloma. Because you can progress from stage I to III very quickly in some cases."
What is more important is to pay attention to the new criteria that were published this week from the International Myeloma Working Group that uses the CRAB system, which stands for elevated calcium in the blood, renal failure, anemia and bone involvement and 3 new criteria. So, MGUS (non-symptomatic myeloma), smoldering myeloma, and symptomatic myeloma are the terms that are most commonly used.
When your father has had more extensive blood work, urine work, bone marrow biopsy and skeletal x-rays followed by MRI or PET/CT, there will be a clearer picture of what is going on with your father and whether he should begin treatment, or not. Since your parents are in Singapore, I would suggest that they look for a myeloma specialist there for a second opinion. It is important to have a specialist on the treatment team even if a local oncologist is the one who is providing the regular treatment. This is because diagnosis and treatment criteria change fairly quickly these days in myeloma. A general oncologist isn't likely to be up to date in these changes. Most specialists are more than willing to coordinate care through a local oncologist.
Also, when reading about myeloma on the Internet, look at the date that the information was published. If it is more than 2-3 years old, it is really out of date.
All the best to your father and hopefully he will be around for you for many years to come. There are a few people in my support group who have been living with myeloma for over 20 years. So, it isn't an unreasonable thing to hope for.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
6 posts
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