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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Re: PET/CT scans during relapse with no symptoms

by coachhoke on Tue Mar 08, 2016 12:10 pm

Jonah,

One difference between Multibilly and me is that I do have many lytic lesions in my back (although they have NEVER caused me any problems ; I think because we caught it very early). And that's why I want to catch the inevitable relapse before it causes problems. But like you, I really don't like taking any medication. Hence, the rock and the hard place.

coachhoke
Name: coachhoke
When were you/they diagnosed?: Apri 2012
Age at diagnosis: 71

Re: PET/CT scans during relapse with no symptoms

by blueblood on Thu Mar 10, 2016 9:09 am

The more I read, the more I think I learn.

I've had 10 PET/CT's since my diagnosis 2 years ago. I had bone involvement, but not any­more. I've often questioned why I am taking Revlimid for maintenance when I'm MRD negative. Now, why am I getting a PET every 4-6 months. I had 6 PET/CT's since my last autologous stem cell transplant.

I'm not really too concerned about radiation. I do most things in moderation, I drink, ride motor­cycles, tip cows, get sun exposure, eat red meat, don't exercise near enough, etc. I know it's not healthy, but I've accepted some things are beyond my control – especially if I don't try to control them. I do have serious regrets about using pesticides and herbicides on the farm and garden without proper protection. I lived in an old farm house that I never treated for ants or roaches -somebody must of used some strong stuff before I moved in because I never saw any. There were a bunch of three legged mice though lol. Of course I froze everybody out in the winter.

I am going to inquire about only getting a PET for the spine and hip and wherever else I've had lesions when I return in August.

blueblood
Name: Craig
Who do you know with myeloma?: Myself
When were you/they diagnosed?: March 2014
Age at diagnosis: 54

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