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Old 06-26-2010, 09:39 PM   #4
hutchibk
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Join Date: Oct 2005
Posts: 3,519
Re: Recurrence vs. Metastatic

Shonda et al, recurrence that is in a distant place (in the torso, brain, an organ, etc), which is not strictly limited to a "local" location" such as breast tissue or an axillary lymph node is called metastasis, and is considered stage IV.

Now this does not at all mean that it is the end of the road. I have been stage IV metastatic for almost 6 years, my first recurrence was in the lungs... I am also what is called "heavily pretreated" meaning that I have had 8 different chemos and 3 different anti-estrogen drugs at this point (as well as 4 different radiation treatments to the brain, pituitary and the rear pelvic bone), and I still have it knocked back and very stable. We only see one small active spot on my adrenal gland at this time, and a small change in anti-estrogen treatment (from aromasin to tamoxifen) seems to be gaining us ground on that spot based on dropping tumor markers. I am also on a combination of Tykerb and Herceptin and have been for almost 2 years.

The key for us HER2 surthrivors is to know that there are a lot of new treatments in the pipeline in trials and the researchers are working feverishly to find us more options and potentially a cure. As my Onc always says, we still haven't scratched the surface of several treatments that we are keeping in our back pockets. I am healthy and living a normal life as a stage IV metastatic patient.

I suggest you look to San Antonio or MD Anderson in Houston for an Onc who is maybe more tapped into the HER2 advances and aware of upcoming trials.
__________________
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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