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Thanks everyone, that is the type of info I was looking for. I met with the Rads Onc (who I loved!) on Friday - he believes that we are dealing with a "seeded" brain, so 15 WBR sessions followed by 5 sessions specifically targeting the 3 spots we know about, will be a good comprehensive way to start. We won't treat the ones in the neck right now. They are poorly defined and it is believed that the chemo is keeping them in check. He said we can watch them and treat them later with rads if needed, but he doesn't want to "back us into a corner" with the neck right now - meaning that if we treat the whole area now (the spots are at C3 and in the marrow between C5/C6), we will also have to hit an area that is currently not affected (C4). He doesn't want to do that right now. He wants to hold out rads in that area until we do more chemo to see if that might knock it out completely in that area.
His magic machine is the newest and most state of the art. Probably the newest in Texas. I will be the inaugural patient in the thing. They have been calibrating it for the last 7 weeks. I start on Apr 23.
I meet with my onc tomorrow to talk about new chemo (Tykerb) potential. It seems that the Taxol/Herceptin has been working tremendously well except that it wasn't able to cross the blood/brain barrier. I hope that the Tykerb will work as well on the small spots in the chest nodes and neck as the Taxol/Herc. But knowing that it crosses the blood/brain barrier means that it will help protect the brain.
How long into your 15 sessions did you start having symptoms (i.e. fatigue, nausea, etc)?
And Darita, what were your probs with the steroids?
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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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