I was recently diagnosed with smoldering multiple myeloma three months ago. I took to heart what many of you have said ... knowledge is power.
Here are my questions/concerns after my first follow up appoint.
I have some aches and pains, nothing constant, nothing I can't stand. My bone survey showed nothing, Dexa scan was normal, PET scan detected nothing. I am getting older ... how worrisome should this be?
And if anyone wants to share how they cope and enjoy life to the fullest, I would love to hear that to. I live in a small town, so there are no support groups to attend; are there any online?
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Re: Questions, so many questions
Hello Smittie,
My mother has smoldering multiple myeloma discovered 3 months ago also. No lesions, no CRAB at the moment ...
Not much can be said. The only thing we know is that it is unique and it may develop or it may not. You won't be able to determine whether or not it will.
I went through the exact same state of mind investigating, reading, documenting, asking ... But at the end of it all the only thing you can do is cross your fingers and live with it in the hope that you will never progress to active multiple myeloma or at least not before 20 years
Best of luck and keep positive.
Maro
My mother has smoldering multiple myeloma discovered 3 months ago also. No lesions, no CRAB at the moment ...
Not much can be said. The only thing we know is that it is unique and it may develop or it may not. You won't be able to determine whether or not it will.
I went through the exact same state of mind investigating, reading, documenting, asking ... But at the end of it all the only thing you can do is cross your fingers and live with it in the hope that you will never progress to active multiple myeloma or at least not before 20 years
Best of luck and keep positive.
Maro
Last edited by Maro on Mon Jun 09, 2014 9:20 am, edited 2 times in total.
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions, so many questions
Maro, thank you for your kind response. I am holding on to hope with both hands. Hoping your mom continues to smolder for a very long time too.
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Smittie - Age at diagnosis: 54
Re: Questions, so many questions
I feel for you Smittie, as this is a scary diagnosis, and not one that you'll get a straight answer on. The only thing for sure is that everyone is different.
I was diagnosed with smoldering myeloma 6 months ago, and I wonder every day what new and baffling symptom I will wake up to. That is the downside.
Here's the upside. I do yoga every day, and it helps. I eat "clean" every day and it helps. I hug my wonderful husband, and let my dog sleep in the bed. We're going to Montana to hike, cause I still can. I refuse to think about how bad it could get. When I get there, I'll deal with it. For now, I make sure I have fresh flowers in my kitchen. Life, as it is now, is about jumping from one tiny pleasure to the next, without too much dwelling on the yuck in between.
Take good care of yourself, and consider this your support group.
I was diagnosed with smoldering myeloma 6 months ago, and I wonder every day what new and baffling symptom I will wake up to. That is the downside.
Here's the upside. I do yoga every day, and it helps. I eat "clean" every day and it helps. I hug my wonderful husband, and let my dog sleep in the bed. We're going to Montana to hike, cause I still can. I refuse to think about how bad it could get. When I get there, I'll deal with it. For now, I make sure I have fresh flowers in my kitchen. Life, as it is now, is about jumping from one tiny pleasure to the next, without too much dwelling on the yuck in between.
Take good care of yourself, and consider this your support group.
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ldahle1 - Name: Laurie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 53
Re: Questions, so many questions
Hi Laurie ... thanks for your very kind words. Seems like we were diagnosed about the same time.
My smoldering seems to be progressing a little faster than what I would like, but I have come to terms with that too. For the most part, I am enjoying each day as the gift that it truly is, spending more times with those I love. Just every now and than gotta say, I get scared ...
Hope you get an answer to your post and the problem clears up. You take good care too ... thanks again for the support as you try to navigate thru it all too!
My smoldering seems to be progressing a little faster than what I would like, but I have come to terms with that too. For the most part, I am enjoying each day as the gift that it truly is, spending more times with those I love. Just every now and than gotta say, I get scared ...
Hope you get an answer to your post and the problem clears up. You take good care too ... thanks again for the support as you try to navigate thru it all too!
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Smittie - Age at diagnosis: 54
Re: Questions, so many questions
If i am not mistaken, overall analysis says that there are is about a 30% chance that smoldering meyloma does not progress to active multiple myeloma.
If this is true (and I suppose it is), then isn't our best option to hope that it will simply never progress for us?
I hang on to that thought as much as I can ...
If this is true (and I suppose it is), then isn't our best option to hope that it will simply never progress for us?
I hang on to that thought as much as I can ...
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions, so many questions
Maro ... Right there with you and trying to remain hopeful that I smolder for a very long time. That being said, hard waiting for blood test results. Hope your mom is doing ok.
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Smittie - Age at diagnosis: 54
7 posts
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