Thread: Please !!!!
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Old 07-02-2009, 01:48 PM   #29
hutchibk
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Join Date: Oct 2005
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I would like to add - posting good news is not offensive. Neither is posting bad news. Please don't apologize for posting about either when you want to share. Please do not feel guilty for where you are, whether it be Stage I, NED, or a Stage IV thriving for an exponential number of years. Please don't withhold posting either, unless it makes you feel better to wait a few days. I admit, I do that sometimes, but other times I just jump right in if the water feels good. That is what we are here for! We are a support group. In my opinion, what IS offensive is to fear monger, name call, disparage, deride, mock, dismiss, slight, scorn, disdain, or insult. If you disagree with someone, it's OK to speak up if you feel strongly about it, but it is the customary and implied code of this site to simply state that you disagree and say why, without engaging in any of those behaviors and inflaming unnecessary controversy, or another choice is to simply move on and don't go there at all. Quite simply, it is about respecting each other and being cordial, even in disagreement. Please don't feel a need to apologize unless you feel you have engaged in disrespectful and/or insulting behavior...

As one who has pretty strong opinions about certain things in this life, I have had to rethink a time or two before posting responses... and have embraced the need to understand that this site is intended to be a gentle landing spot for those of us with HER2 breast cancer. A gentle place to learn how to cope with our dx. A gentle place to share what works for us when fighting this disease day in and day out. A gentle place to learn the reality surrounding our cancer lives, especially when it is devastating. A gentle place to learn about the science and discoveries. A gentle place to ask questions. And a gentle place to support each other as we face the fear of the uncertainty.

For those (including me) who do frequent other sites on the internet... news sites, opinion forums, etc., this site is different from those. You have to change your hat, your brain, and your mood when you come here. This is a shared experience, not intended to be an opinion/debate driven forum. This site is a valuable tool and a place for understanding, learning, sharing and respect for the process.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."

Last edited by hutchibk; 07-02-2009 at 06:18 PM.. Reason: add, and add some more
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