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Re: brain mets symptoms and scan
I am stage IV for 6.5 years and have never had a brain met symptom. That said, I have had a total of 12 puntates (meaning pin prick size) and 6 brain spots (3-8mm) that were spread around in places that were not symptomatic. We were doing brain MRIs about once every 18 months until we saw nothing on CT/body scans but my tumor markers were going up. (I am one of those who is very sensitive to TMs, they have always told us where the new and small activity is).
So, with increasing TMs, we MRIed the brain, and found all these spots in 2007. It was 3 weeks after Tykerb had come on to the market. I eschewed WBR and tried Tykerb/Xeloda straight away with blessing of my Onc and Rads Onc, with the understanding that I would MRI again closely at one month intervals. After 3 months we could see that the Tykerb/Xeloda combination was working for me, so we let it do it's work. It made all the punctates go away and the 6 small tumors went to sleep entirely for 18 months. When the 6 small tumors woke up, we went straight away into high dose IMRT radiation "whack-a-mole" treatment which targeted each individual one (not WBR), and we have been able to remain clear since 2008. We monitor my brain right now with 3 month MRIs. (partially because outside of the brain (not a brain met) but in the boney skull, I have also had a spot show up behind my pituitary gland, and it has been IMRT high dose radiated also).
Had we waited until I was symptomatic, it would have been too late we are pretty sure.
So I am a proponent of regular MRI scanning... I cannot say how often for you, but in my case, my Onc was always very very mindful of the potential.
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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; 01-07-2012 at 09:46 PM..
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