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Old 12-27-2012, 10:38 AM   #17
jml
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Join Date: Dec 2006
Posts: 415
Re: Starting WBR for brain metz

Ugh, Karen!
I'm so sorry! But so glad you're feeling better, but hate that you had to go through such a scary experience. Brain mets are scary enough on their own!
I did 15 rounds of WBR back in February for 8 lesions in my brain, one of the largest was in my brain stem, but I was virtually asymptomatic. I had 2-3 occasions when I felt a little 'earth shift'- but otherwise no symptoms. A brain MRI 8 weeks earlier showed a single 2mm spot in the same neighborhood where I had Novalis for a single 4mm spot 18mos prior,but that was it. I was shocked to go from one 2mm spot to 8 spots, with a large one in my brain stem in only 8 weeks. But I guess it's always a shock to hear that this monster has invaded your brain.
The WBR was tolerable, though lost my hair for the 4th time ~cycle 5. I could just rub the hair off my scalp, already so short from having lost it 5 months prior & just beginning to grow back, or pluck it out with my fingers. It's growing back now again, but after 8mos. It's very thin, dull and slow to grow, & too short & thin to wear without a hat in this cold weather, but hair none-the-less.
I found the decadron (steroids) a necessary evil. I just felt OFF on that drug- hungry, aggressive, moon-faced- but there's no getting around it, so you take the drug & manage the side effects as best you can...Don't we always?
The good news is the one month post-15-rounds-of-WBR MRI was clean. Totally clean! No waiting 3 months to see full effect of rads. And by the grace of God, it has remained so ever since. I pray so hard it stays this way.
Hold on to your hope, optimism & faith and know that rads will shrink & decimate those lesions! Stay strong, hydrated,well-rested and you will get through this. I continued to teach Pilates classes & clients during WBR, but was careful to not over-do it.
Take especially good care of yourself right now & Keep the Faith~

Jessica
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