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Old 10-16-2007, 09:52 AM   #17
hutchibk
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Join Date: Oct 2005
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HI Debbie - read my posts a A LOT closer. They are NOT irrelevant to the discussion. I beg to differ wholeheartedly. I did not have advanced b/c the first time my TMs hinted to us that I should go for scans. I was (stage 2b) at primary diagnosis, had mastectomy and first-line chemo, and then I was NED for 15 months. Luckily we had established a baseline for my CA 15.3 from the point at the end of my initial chemo and routinely followed my CA 15.3 while I was NED and was expected to stay that way... But my doc doesn't like to take chances, he errs on the side of caution with Her2, and believes that the earlier and smaller the mets are when found, the better the treatment options and outcomes will be... he doesn't rely on TMs as an individual indicator, but he considers them in combination with the whole picture. It is a piece of the puzzle. So then after 15 months of NED, my TMs started to inch up for a couple of months and we scanned out of an abundance of caution and found my very first mets (lungs, chest nodes) after being NED for 15 months. We found them much smaller, much earlier, and much much much more treatable than we would had we not had that initial clue and just waited for symptoms. (Sometimes there are NO symptoms until the mets are very large, making them much harder to treat and offering less options for treatment, i.e. liver mets that are small and eligible for ressection as opposed to liver mets that have taken over the liver and can only rely on chemo for treatment...) In my case, because we found it early, we were able to treat it appropriately, less aggressively, and subsequently less expensively. There can absolutely be a survival benefit, and no-one can tell me otherwise. Sorry.

If your "opinion" is that there is no benefit to watching really closely, then that is your experience. I would be careful telling others that there is absolutely "no benefit to "watching really closely", no matter how high your risk of recurrence is. NO BENEFIT." Or that "intensive surveilance does not prevent recurrence and it does not improve survival nor quality of life" - It did not prevent my recurrence, but it offered me earlier info, more treatment options with better outcomes, and did improve my survival and my quality of life. Hands down.

I take offense to the disdainful and self-righteous tone in your post. Expecially a sentence that simply says: "Duh." There are those of us who have had an entirely different experience than the "absolute certainty" that you profess in your post.
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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."
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