Cathy,
Spot on insights from Bob. I am 5 1/2 years into my smoldering journey and I'm also stable. Like Bob, I had one specialist tell me that I was very likely looking at a transplant in 12 months when I was first diagnosed. Then I found another specialist that gave me a speech similar to Bob's current specialist, and we were also of like minds on various treatment approaches. I ended up going with the second specialist and have never looked back.
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: No one seems to take my smoldering myeloma seriously
Dear Anna, Defcon Dragon, Eileen, Ellen and Bob,
Thank you all very much for your replies. It is very reassuring to hear of your own experiences and that we are all affected in different but also very similar ways. I’m learning new things all of the time and am starting to feel like the future may not be as bad as I initially thought. Thank you all again and best of luck to you all!
Thank you all very much for your replies. It is very reassuring to hear of your own experiences and that we are all affected in different but also very similar ways. I’m learning new things all of the time and am starting to feel like the future may not be as bad as I initially thought. Thank you all again and best of luck to you all!
Re: No one seems to take my smoldering myeloma seriously
Hi Cathryn,
I've been smoldering (evolving) for the past 4 years with very little change in my overall numbers since the initial diagnosis. The only prescription drug treatment I am receiving is Zometa once every 3 months for early stage osteoporosis of my lumbar spine.
I think the most important things you can do now is educate yourself about the disease and follow your doctors' advice (and question it if you have concerns). Eat healthy, stay active, and do not let the diagnosis 'drag you down', so to speak. You may very well remain smoldering for many years to come, and who knows what treatments (cures?) are ahead for us. Enjoy the life you have now.
In all honesty, I rarely think about my diagnosis other than the time surrounding my doctor visits (once every 3 months). It took me a while to get to this point, but until things change, I plan on keeping it that way.
As for who to tell, that's a very personal choice. I've told my immediate family and a couple of close friends, but that's it. Once the initial conversation took place, I haven't spoken to any of them about it since, except for my wife of course.
Take care.
I've been smoldering (evolving) for the past 4 years with very little change in my overall numbers since the initial diagnosis. The only prescription drug treatment I am receiving is Zometa once every 3 months for early stage osteoporosis of my lumbar spine.
I think the most important things you can do now is educate yourself about the disease and follow your doctors' advice (and question it if you have concerns). Eat healthy, stay active, and do not let the diagnosis 'drag you down', so to speak. You may very well remain smoldering for many years to come, and who knows what treatments (cures?) are ahead for us. Enjoy the life you have now.
In all honesty, I rarely think about my diagnosis other than the time surrounding my doctor visits (once every 3 months). It took me a while to get to this point, but until things change, I plan on keeping it that way.
As for who to tell, that's a very personal choice. I've told my immediate family and a couple of close friends, but that's it. Once the initial conversation took place, I haven't spoken to any of them about it since, except for my wife of course.
Take care.
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