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Old 09-12-2010, 12:14 AM   #5
hutchibk
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Join Date: Oct 2005
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Re: brain mets have arrived

Don't know if you have access to Tykerb down under yet, but if so, perhaps consider making a systemic change first, before radiation. That's what I did. I had 5 small mets and multiple punctates (pin prick sized seeds). We switched my treatment to Tykerb/Xeloda when I was dxed w/ my brain mets, and made a commitment to MRI every month for a few months to see what results we would get. My brain mets resolved and "went to sleep" for about 18 months with that treatment alone. Four of them decided to wake back up 18 months later, but the multiple punctates were wiped out by the Tykerb, so we then did IMRT targeted radiotherapy (similar to Gamma and Cyber, but my radiation onc likes it better having worked with all of them). It was 5 consecutive days of high dose targeted radiation and ZAP, they were gone never to be heard from again, except for the 5th rogue one which woke up a year later (last summer), which we zapped, now gone... I get a brain MRI every 4-6 months and all has been staying clear. We call it the whack-a-mole method. I am still on Tykerb, now with Herceptin and tamoxifen.

I chose this particular path in partnership and very close consultation of my oncologist and radiation oncologist working hand in hand. I was my onc's first patient on Tykerb, but he is sensitive to the desire to avoid WBR if possible... and I wanted to avoid WBR at all costs, if possible. I am THRILLED with the results to this point and wonder if other oncs have offered their patients this path as an option?
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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; 09-12-2010 at 07:25 PM..
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