My name is Kevin. I am 47 years old, happily married, the father of 2 sons and 1 step-daughter, and a computer systems engineer by trade. I suffer from the normal middle-aged aches & pains as well we the usual family & career related stresses, but overall I lead a healthy, active, happy life. I am currently in the best physical condition that I've been in for over 20 years.
I was diagnosed with Smoldering Multiple Myeloma on Jan 2nd, 2014 following a bone marrow biopsy. Initially diagnosed with MGUS, my M-Spike is type IgG and has bounced between 1.2 and 1.4 with no trending to-date. However, based upon my description of nerve pain in my arms and legs, my hematologist ordered a bone marrow biopsy. My bone marrow plasma count tested between 10-15%. These numbers do not seem terribly bad to me, but I understand that they technically put me in the "intermediate risk" category for progression from SMM to symptomatic Multiple Myeloma requiring treatment. I had prepared myself for the possibility of this result, but it was clearly not the result I was hoping for.
Still in a bit of denial, my immediate task is to wrap my mind around this diagnosis. What does it mean? Who do I tell? What do I tell them?? My next step is a visit to one of the regional cancer specialist centers for additional testing, confirmation of the diagnosis, and perhaps additional risk classification information. Barring any insurance issues, I am headed to the Moffitt Cancer Center in Tampa within the next 3-4 weeks, after which I hope to have more of my questions answered.
In the meantime, life goes on as normal, living every day to the fullest extent possible while also trying to learn about this condition that I had never heard of just a few short months ago. I can already tell that The Myeloma Beacon will be a great source of information and means of connecting to others who are or have gone through the same situation.
Be well, and live free every day...
Forums
4 posts
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LiveFree - Name: Kevin
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 47
Re: Newly diagnosed with smoldering myeloma
Hi Kevin,
Sorry to see you join the club.
You diagnosis sounds very similar to my diagnosis from a year ago.
My advice to you is to:
1. Remember that you very well may not ever progress to symptomatic multiple myeloma. It's easy to lose sight of this fact.
2. Ask a lot of questions and educate yourself about the disease
3. Talk to a variety of different multiple myeloma specialists, including those affiliated and not affiliated with transplant centers, so as to be get a good, balanced view of our your options, should you ever progress.
4. Eat healthfully and exercise regularly
5. Read this post to start to familiarize yourself with your options regarding treatment, should you progress: https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
6. Enjoy life and your family
Sorry to see you join the club.
You diagnosis sounds very similar to my diagnosis from a year ago.
My advice to you is to:
1. Remember that you very well may not ever progress to symptomatic multiple myeloma. It's easy to lose sight of this fact.
2. Ask a lot of questions and educate yourself about the disease
3. Talk to a variety of different multiple myeloma specialists, including those affiliated and not affiliated with transplant centers, so as to be get a good, balanced view of our your options, should you ever progress.
4. Eat healthfully and exercise regularly
5. Read this post to start to familiarize yourself with your options regarding treatment, should you progress: https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
6. Enjoy life and your family
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly Diagnosed Smoldering Myeloma
Hi Kevin -
Multibilly has a great response to your email and here's my version just to underline.
I saw your e-mail in the summary I get of postings to this site. I wanted to respond because much of what you said is similar to my experiences. Diagnosed with MGUS in 2002, smoldering in 2005; I did not progress to full blown myeloma until 2012.
You are going to Moffitt, which is a good facility. I had an auto stem cell transplant there 14 months ago.
As you can tell from my timeline, it took 10 years for my myeloma to develop fully. I was referred to an oncologist in 2002 and was told to ignore the word "cancer" on the building where I had my monthly to bi-monthly blood tests and appointments. I gladly did ignore the word for about a year and then I thought, OK, time to check this out.
I went a little zany collecting information, becoming a member of e-mail lists, meeting people with myeloma, etc. That was a good thing because it gave me a basis of knowledge.
But then, I decided to ignore the word CANCER on the building as originally advised and took some new advice from a friend I had met in my researching. By the way, he was your age at the time and is now 12 years post transplant. The advice was to learn all you can about the disease, get a myeloma specialist (or two), set up your resources such as this list, and then basically FORGET ABOUT IT other than practicing a healthy lifestyle and keeping your appointments.
Check the lists once in a while as a cursory review just to keep things in the back of your mind. But LIVE YOUR LIFE! Don't get over absorbed into this thing. You'll find that folks with active disease tend to be on the sites, and that's when you should be there. Otherwise cursory review does the trick or it will make you waste your living time!
As someone else said, if you have MGUS or smoldering myeloma, or even myeloma these days . . . "we know we are going to get hit by a bus, and that it's left the garage and headed towards us with "Myeloma" as the route, but it speeds up and slows down at different paces". In the meantime, live your life. Don't stand in the street waiting for the bus. You aren't any different today then yesterday when you didn't know about the myeloma. A REAL bus could hit you. 'Ya never know. LOL!
Easier said then done, I know. But after your initial panic and learning, think about it!
Multibilly has a great response to your email and here's my version just to underline.
I saw your e-mail in the summary I get of postings to this site. I wanted to respond because much of what you said is similar to my experiences. Diagnosed with MGUS in 2002, smoldering in 2005; I did not progress to full blown myeloma until 2012.
You are going to Moffitt, which is a good facility. I had an auto stem cell transplant there 14 months ago.
As you can tell from my timeline, it took 10 years for my myeloma to develop fully. I was referred to an oncologist in 2002 and was told to ignore the word "cancer" on the building where I had my monthly to bi-monthly blood tests and appointments. I gladly did ignore the word for about a year and then I thought, OK, time to check this out.
I went a little zany collecting information, becoming a member of e-mail lists, meeting people with myeloma, etc. That was a good thing because it gave me a basis of knowledge.
But then, I decided to ignore the word CANCER on the building as originally advised and took some new advice from a friend I had met in my researching. By the way, he was your age at the time and is now 12 years post transplant. The advice was to learn all you can about the disease, get a myeloma specialist (or two), set up your resources such as this list, and then basically FORGET ABOUT IT other than practicing a healthy lifestyle and keeping your appointments.
Check the lists once in a while as a cursory review just to keep things in the back of your mind. But LIVE YOUR LIFE! Don't get over absorbed into this thing. You'll find that folks with active disease tend to be on the sites, and that's when you should be there. Otherwise cursory review does the trick or it will make you waste your living time!
As someone else said, if you have MGUS or smoldering myeloma, or even myeloma these days . . . "we know we are going to get hit by a bus, and that it's left the garage and headed towards us with "Myeloma" as the route, but it speeds up and slows down at different paces". In the meantime, live your life. Don't stand in the street waiting for the bus. You aren't any different today then yesterday when you didn't know about the myeloma. A REAL bus could hit you. 'Ya never know. LOL!
Easier said then done, I know. But after your initial panic and learning, think about it!
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NancyStLou - Name: NancyStLou
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: multiple myeloma 1/2012; SMM 5/2005; MGUS 10/2002;
- Age at diagnosis: 47
Re: Newly diagnosed with smoldering myeloma
If you don't me asking, with smoldering myeloma, do you know if it's a light chain disease? If so, what were your light chain levels and did you have proteinuria? Thanks so much for any info you can offer!
Sending positive thoughts your way,
Sending positive thoughts your way,
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Liziec
4 posts
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