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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: SMACKDOWN Victory!
OH, my FRIENDS!!
What would I do without you?!
Let's not ever find out!
Thank you so much for caring about me, and sending love and prayers!
The short version is... I'm fine! Yay!
It was a very long and trying week!
When I got home from my appointment with the neurologist on Tuesday, I typed out all the options offered to me ...
and then the post vanished!
I was sooo pissed, and tired... I just couldn't type it all out again.
Besides, two of the three options that were offered were not things I was going to submit to anyway so...
it was just a matter of letting the much heralded,
but often wrong, brain tumor board come around to my way of thinking.
(They didn't meet till Thursday afternoon)
Option 1 - which I have already declined several times - craniotomy.
But, either the tumor board has finally realized the fool-hardiness of that option in my case.
Or the nim-null who keeps suggesting craniotomy was absent....
because no one brought that up this time.
Option 2 - the neurosurgeon told me there had been some clinical evidence that Avastin and WBR had a synergistic effect on HER2 brain mets.
But, as I pointed out to him...
I don't believe there is any disease lurking in my brain.
We're just trying to get rid of radiation necrosis.
In which case I asked, "Isn't treating radiation necrosis with MORE radiation sort of like saying -
gee I'm so hot with this sweatshirt on...
maybe I should put my coat on too!
Fortunately, when the beloved tumor board met,
both the neuro-oncologist and the radiation oncologist in attendance nixed that option.
(Not with the sweatshirt analogy exactly... but something along those lines.)
Option 3 - continue Avastin - because IT WAS WORKING!!
I'm sure you guessed... I prefer option #3.
Now it's just a matter of convincing the insurance company that Avastin, though very expensive, is nowhere near as expensive as surgery, recovery, etc...
So... I've been able to function on 1 mg of Decadron/day. I am no longer deflating however.
But... I'm hoping to have 20 or 30 years to lose those extra pounds... so I have time. 
Thanks again for checking in on me. I only found out the tumor board results myself, yesterday...
but I'm sorry I caused any worry in the HER2 world.
Loads of love to all of you!
Denise
Queen of Denial
Chemo Ninja
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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