Hi everyone.
I am a 37 year old woman from London, England. Mother to 5 children and have been diagnosed this morning as having asymptomatic myeloma stage 1.
My journey began in August after having a routine blood test done which came back with a faint band para protein. I was then asked for a urine sample, which tested positive for Bence Jones. All hell broke loose in my head at that point as I frantically searched the Internet and discovered what that meant. I frightened myself half to death reading all the statistics and horror stories available, and was convinced that my death was near.
I then suffered (and I mean SUFFERED) 2 failed attempts at a bone marrow biopsy and then thankfully a successful third attempt which came back today as 15% plasma cells. Which has led to the diagnosis of smoldering myeloma.
I have been on a roller coaster of emotions today and am struggling to see how I will cope. The thought of leaving my children is heartbreaking and I'm finding it incredibly hard to look at them without bursting into floods of tears. But, since coming on here this evening, I am finding some comfort in reading other people's journeys and now I don't feel quite so alone.
I understand that my myeloma progression may not be for many years yet and, with treatment, most of us have a good chance at a long remission. And who knows what the future holds for new treatments and maybe even one day a cure. I plan to have many many more years with my beloved children and am not about to give up the fight to be around for as long as I possibly can. My haematologist has said that all my other levels are ok -- kidney function, calcium, antibodies, etc., so am taking this as a positive.
I think it would be good for me to talk to other myeloma patients and share our feelings, experiences, fears and hopefully some good advice and reassurance along the way, as I'm sure this would help me and hopefully others reading it too.
I look forward to hearing from you and wish all of you good health and a happy life.
Ollie x
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Re: Smoldering myeloma diagnosis today at 11:30 am
Hello again Ollie,
Glad you've taken the time to introduce yourself. As we said before in response to your comment on Tom Shell's recent column, we're very sorry to hear of your diagnosis, but glad you've found The Beacon and hope that you'll get a lot of support and information from everyone here.
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. We suspect that's already true in your case, given the way things are organized in the UK (and the fact that you're in London). 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 section of the forum here has 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!
Glad you've taken the time to introduce yourself. As we said before in response to your comment on Tom Shell's recent column, we're very sorry to hear of your diagnosis, but glad you've found The Beacon and hope that you'll get a lot of support and information from everyone here.
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. We suspect that's already true in your case, given the way things are organized in the UK (and the fact that you're in London). 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 section of the forum here has 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!
Re: Smoldering myeloma diagnosis today at 11:30 am
Hi!
I was diagnosed with smoldering myeloma in March 2014 and can confidently tell you it gets better. Give yourself time. Looks like you already got some great advice in some of the ways you need to educate yourself about this disease. It's important so you can play in active role in decision making.
The people on this site are AMAZING in answering questions and sharing their knowledge. So ask away.
For now, remember, to take deep breaths. Look into the smiling faces of your children and live life, because that's all any of us can do. Best of luck.
I was diagnosed with smoldering myeloma in March 2014 and can confidently tell you it gets better. Give yourself time. Looks like you already got some great advice in some of the ways you need to educate yourself about this disease. It's important so you can play in active role in decision making.
The people on this site are AMAZING in answering questions and sharing their knowledge. So ask away.
For now, remember, to take deep breaths. Look into the smiling faces of your children and live life, because that's all any of us can do. Best of luck.
-
Smittie - Age at diagnosis: 54
Re: Smoldering myeloma diagnosis today at 11:30 am
Hello there,
My mother was diagnosed in March 2014 at age 64, just about at the same time as Smittie (not the age part though Smittie, don't worry !
)
There is one thing that no one has mentioned yet in this thread and I would like to point it out:
There is a chance your smoldering myeloma may never progress! You will learn more about it as you read through the forum, but I believe a lot in optimism and the impact it may have on your psychological health, which can reflect on your physical health.
Please hang on to that. It may take years to progress, or may simply never progress to active multiple myeloma.
As for the "how you may feel" part, Smittie is right. Time is the only remedy. It is very hard at first to digest but after a few weeks, months you get used to the idea and you begin to live life at it's fullest.
Take care of yourself.
Maro
My mother was diagnosed in March 2014 at age 64, just about at the same time as Smittie (not the age part though Smittie, don't worry !
)There is one thing that no one has mentioned yet in this thread and I would like to point it out:
There is a chance your smoldering myeloma may never progress! You will learn more about it as you read through the forum, but I believe a lot in optimism and the impact it may have on your psychological health, which can reflect on your physical health.
Please hang on to that. It may take years to progress, or may simply never progress to active multiple myeloma.
As for the "how you may feel" part, Smittie is right. Time is the only remedy. It is very hard at first to digest but after a few weeks, months you get used to the idea and you begin to live life at it's fullest.
Take care of yourself.
Maro
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Smoldering myeloma diagnosis today at 11:30 am
Hi Ollie.
I was diagnosed with smoldering myeloma at the age of 41 in September 2009. At the time, I had a 7 month old son, and I was told I might need treatment within 1 or 2 months.
It is now 5 years later and I am still smoldering.
Yes, it's extremely emotionally and mentally challenging to deal with this diagnosis at a relatively young age with children at home, and you need to learn to live as much as possible "in the moment" and enjoy every day with your loved ones as much as you can without worrying when treatment will become necessary.
It is also scary and frustrating to realize that myeloma experts may differ on questions such as whether you should commence treatment and, if so, what the treatment should be. You will need to learn to live with the uncertainties and conflicting opinions and educate yourself as much as possible so that you feel comfortable making key decisions when they become necessary.
Nevertheless it does get easier with time, and you can continue to live a full and otherwise healthy life for years to come as many other "smolderers" like myself have done. It takes time but you will get there.
Best wishes, and, if you have more specific questions, I would be happy to answer them.
I was diagnosed with smoldering myeloma at the age of 41 in September 2009. At the time, I had a 7 month old son, and I was told I might need treatment within 1 or 2 months.
It is now 5 years later and I am still smoldering.
Yes, it's extremely emotionally and mentally challenging to deal with this diagnosis at a relatively young age with children at home, and you need to learn to live as much as possible "in the moment" and enjoy every day with your loved ones as much as you can without worrying when treatment will become necessary.
It is also scary and frustrating to realize that myeloma experts may differ on questions such as whether you should commence treatment and, if so, what the treatment should be. You will need to learn to live with the uncertainties and conflicting opinions and educate yourself as much as possible so that you feel comfortable making key decisions when they become necessary.
Nevertheless it does get easier with time, and you can continue to live a full and otherwise healthy life for years to come as many other "smolderers" like myself have done. It takes time but you will get there.
Best wishes, and, if you have more specific questions, I would be happy to answer them.
-
JasonH
Re: Smoldering myeloma diagnosis today at 11:30 am
Thanks for sharing your story Jason. I truly believe that we can smolder forever. Keep positive and it can happen' 
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
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