Hello Everyone and Happy New Year!
I am Dean, and over the past month, I have been taking the initial steps to being diagnosed with multiple myeloma.
It started in November when a celiac test came back with elevated IgA levels. Over three blood tests, my IgA was 1051, 1119 and 1224 mg/dl.
I then had a test which included an M-Spike of 0.7 g/dL.
On December 22nd, I had my first bone marrow biopsy. The results were a little delayed due to the holidays, but I received my diagnosis this morning.
My plasma percentage came back at 12% and they told me it was officially asymptomatic multiple myeloma.
My father's brother has multiple myeloma and was diagnosed two years ago, at age 67. He lives in Arkansas and has been treated at UAMS in Little Rock, which is where I might try to get to, as well.
My maternal Grandmother died from multiple myeloma at age 37 in 1967, as well, before I was born. Evidently, it is in the family, although I know it is not considered hereditary yet.
I was at Rocky Mountain Cancer Center this first month, as that was where I was referred. Had I not pushed for the biopsy, it would not have happened, as my doctor didn't think it needed to be done.
I then called the Blood Cancer Institute at St. Luke's in Denver and they got me in with a myeloma specialist (Dr. Matous) this Thursday. I am excited to see him and ready to tackle this head on with all I have in me.
I have gleaned so much from this website and forum over the past month, as I was not getting much information or help from my first doctor. It is a great resource and the people are inspirational.
I am in with you now and look forward to sharing my experience and being an encouragement to whoever I can.
Best,
Dean
Forums
4 posts
• Page 1 of 1
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Mountaineer - Name: Dean
- Who do you know with myeloma?: Self, Uncle
- When were you/they diagnosed?: 40, 67
- Age at diagnosis: 40
Re: 40 years old, diagnosed this morning with myeloma
We look forward to hearing how it goes. Best wishes.
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: 40 years old, diagnosed this morning with myeloma
Dean,
I love the strength, mindset, and attitude you are already displaying as you prepare yourself to take this on. Stay strong and keep it up. Please continue to post how things are going. We are all pulling for you!
JR
I love the strength, mindset, and attitude you are already displaying as you prepare yourself to take this on. Stay strong and keep it up. Please continue to post how things are going. We are all pulling for you!
JR
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ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
Re: 40 years old, diagnosed this morning with myeloma
Hi Dean,
Welcome! I'm sorry that you have to be here, but you've found a great source of information and support.
It looks like your doctors currently think you have smoldering multiple myeloma. Currently, the most common approach to handling smoldering myeloma patients is "watch and wait" -- that is, to monitor the patient's disease and wait to start treatment until the patient's disease progresses to active myeloma (if it progresses).
Your relatively low M-spike and plasma cell percentage suggest that you probably have smoldering myeloma. However, some questions that will be critical to determining if you have smoldering myeloma, or active (symptomatic) multiple myeloma requiring treatment, include:
1. What is your hemoglobin level?
2. What is your serum calcium level?
3. What is your serum creatinine level?
4. Do x-rays or other imaging show signs of bone lesions?
5. What is your serum free light chain ratio?
You probably have had many of the blood tests and imaging done to answer these questions. For example, have you had a serum free light chain test done? It would report kappa and lambda free light chain levels, as well as a kappa-lambda ratio.
The reason I ask the questions I listed above is because they are the ones that will determine whether you meet the diagnostic criteria for a (symptomatic) multiple myeloma diagnosis, meaning that you would soon start treatment, or whether you have smoldering myeloma.
You can find more information on the diagnostic criteria for multiple myeloma, smoldering myeloma, MGUS, and solitary plasmacytomas here:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
Finally, if you want to get a sense what sort of lab results you should start tracking, and what can happen with the results if you have smoldering myeloma, I recommend you check out this posting by Multibilly
https://myelomabeacon.org/forum/post46149.html#p46149
in the thread he started when he began taking fenofibrate (Tricor).
I hope some of this information is helpful to you, Dean. Good luck. and keep us posted.
Welcome! I'm sorry that you have to be here, but you've found a great source of information and support.
It looks like your doctors currently think you have smoldering multiple myeloma. Currently, the most common approach to handling smoldering myeloma patients is "watch and wait" -- that is, to monitor the patient's disease and wait to start treatment until the patient's disease progresses to active myeloma (if it progresses).
Your relatively low M-spike and plasma cell percentage suggest that you probably have smoldering myeloma. However, some questions that will be critical to determining if you have smoldering myeloma, or active (symptomatic) multiple myeloma requiring treatment, include:
1. What is your hemoglobin level?
2. What is your serum calcium level?
3. What is your serum creatinine level?
4. Do x-rays or other imaging show signs of bone lesions?
5. What is your serum free light chain ratio?
You probably have had many of the blood tests and imaging done to answer these questions. For example, have you had a serum free light chain test done? It would report kappa and lambda free light chain levels, as well as a kappa-lambda ratio.
The reason I ask the questions I listed above is because they are the ones that will determine whether you meet the diagnostic criteria for a (symptomatic) multiple myeloma diagnosis, meaning that you would soon start treatment, or whether you have smoldering myeloma.
You can find more information on the diagnostic criteria for multiple myeloma, smoldering myeloma, MGUS, and solitary plasmacytomas here:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
Finally, if you want to get a sense what sort of lab results you should start tracking, and what can happen with the results if you have smoldering myeloma, I recommend you check out this posting by Multibilly
https://myelomabeacon.org/forum/post46149.html#p46149
in the thread he started when he began taking fenofibrate (Tricor).
I hope some of this information is helpful to you, Dean. Good luck. and keep us posted.
-
JimNY
4 posts
• Page 1 of 1
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