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hutchibk · 06-14-2007, 12:20 PM

LuAnn - another perspective from someone with brain mets...

We found my brain mets in April on MRI. I have no symptoms at all from the mets. There were two that were 9mm (one in the rt celebellum area and one in the rt parietal area) and several punctates, which look like the period at the end of this sentence. At the time, my docs went back and forth and finally agreed that WBR would be the prudent way to go. We also knew that we were switching my drugs to Tykerb/Xeloda. I was not ready for WBR, didn't think that is what I wanted to do at that point. I was leaning towards the targeted 'whack-a-mole' method, wanting to save WBR for last resort down the road. So, I asked my onc and rads onc if they were comfortable with us doing 'watchful waiting' for a month or 6 weeks to see what the Tykerb/Xeloda might do. They agreed that it would be a reasonable way to approach it. So that's what we did. I had an MRI last week, and it showed that there was no growth at all of the brain spots. They had remained completely stable on the Tykerb/Xeloda, and that one of the 9mm spots was less enhanced, which the radiologist said was a positive thing. Along with that great MRI result, my tumor markers fell from 37.5 to 17.5. My onc and rads onc both agree that we can continue 'watchful waiting' for another 6-8 weeks and do another MRI before we make any other decisions....

06-14-2007, 12:20 PM	#31
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	LuAnn - another perspective from someone with brain mets... We found my brain mets in April on MRI. I have no symptoms at all from the mets. There were two that were 9mm (one in the rt celebellum area and one in the rt parietal area) and several punctates, which look like the period at the end of this sentence. At the time, my docs went back and forth and finally agreed that WBR would be the prudent way to go. We also knew that we were switching my drugs to Tykerb/Xeloda. I was not ready for WBR, didn't think that is what I wanted to do at that point. I was leaning towards the targeted 'whack-a-mole' method, wanting to save WBR for last resort down the road. So, I asked my onc and rads onc if they were comfortable with us doing 'watchful waiting' for a month or 6 weeks to see what the Tykerb/Xeloda might do. They agreed that it would be a reasonable way to approach it. So that's what we did. I had an MRI last week, and it showed that there was no growth at all of the brain spots. They had remained completely stable on the Tykerb/Xeloda, and that one of the 9mm spots was less enhanced, which the radiologist said was a positive thing. Along with that great MRI result, my tumor markers fell from 37.5 to 17.5. My onc and rads onc both agree that we can continue 'watchful waiting' for another 6-8 weeks and do another MRI before we make any other decisions.... __________________ 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."