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Re: Brain Mets - new or old?
Hi Friends...
Can you believe I'm still on 8 mg of decadron per day...and can't seem to drop any further without the dizziness/balance mess starting up again!? My face is immense! I feel like each of my cheeks weighs about 3 pounds...and my poor eyes are even puffy now. Because the swelling is so 'bad' this time...I have to wean very slowly...and super carefully. Like dropping back 2 mg per week, until I'm down to only 2 mg per day. Do the math...this could take forever at the rate I'm going! But...whereas the other two times they just told me to wean...and let them know if any SEs showed up...this time, I got an official calendar...and a stroke warning sign magnet.
I don't mean to whine...things could be much worse. I could be having seizures...or God forbid bleeding. But, while the docs say this isn't completely unexpected from a tumor the size mine was...it's still freakin me out a little. This bad boy got zapped 7 months ago...and there's more swelling now than there ever has been.
The good news is that nothing new has popped up...but sheeesh...I could use a little break right about now. And some good, uninterupted, no-steroid-ruined sleep. Plus...steroids are not meant to be taken for this long...'roid rage' is REAL. I'm becoming quite cranky. It's unattractive to say the least. And, I eat like an NFL linebacker!
My next MRI isn't until the end of April...and hopefully I won't still be on decadron then!! But, more importantly...I hope the MRI shows less swelling...more shrinkage...and NO PROGRESSION!
On a happier note...my echo last week not only didn't show a need for a Herceptin/Tykerb holiday...the EF actually went up since last time. Very cool!
So friends...if you're not tired of sending prayers, and healing...I could still use help with this swelling mess. Still hanging tough...laughing as much as I can...
Denise
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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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