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hutchibk · 06-29-2010, 09:03 PM

Are you ER+? If so, are you taking anything to address that target? After 3 yrs without it (thinking that it was doing us no good), we added Aromasin last summer as a small measure (added to Tykerb/Herc and 3 mo Zometa), to see what it might do...and it seemed to buy us some results... we did it at the same time that we radiated a bone spot and the pituitary spot and everything held well and looked NED until April when we saw a new little spot on my adrenal. At that point we only switched my Aromasin to Tamoxifen and 15.3 has dropped from 38 to 23ish. Will MRI the adrenal in a couple of weeks.

Make sure you MRI the bone spots that are showing on PET/CT for measurement and further info. My Rads Onc now reads EVERY MRI to be sure what we are looking at. We have experienced the occasional report tell us that they see a new spot, only to find out that it was necrotic. My rads onc takes no more chances, he is the final determining set of eyes.

Beyond that, what does your doc think about you getting into the expanded access T-DM1 trials... My onc(s) think that that is my next best idea that could really gain us some ground and some hold time. Just waiting for it to open up in Texas.

I am guessing that you might have to give up on the vaccine and T-cell therapy if you are showing progression... sigh.

06-29-2010, 09:03 PM	#9
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	Re: Treatment Decision Time Are you ER+? If so, are you taking anything to address that target? After 3 yrs without it (thinking that it was doing us no good), we added Aromasin last summer as a small measure (added to Tykerb/Herc and 3 mo Zometa), to see what it might do...and it seemed to buy us some results... we did it at the same time that we radiated a bone spot and the pituitary spot and everything held well and looked NED until April when we saw a new little spot on my adrenal. At that point we only switched my Aromasin to Tamoxifen and 15.3 has dropped from 38 to 23ish. Will MRI the adrenal in a couple of weeks. Make sure you MRI the bone spots that are showing on PET/CT for measurement and further info. My Rads Onc now reads EVERY MRI to be sure what we are looking at. We have experienced the occasional report tell us that they see a new spot, only to find out that it was necrotic. My rads onc takes no more chances, he is the final determining set of eyes. Beyond that, what does your doc think about you getting into the expanded access T-DM1 trials... My onc(s) think that that is my next best idea that could really gain us some ground and some hold time. Just waiting for it to open up in Texas. I am guessing that you might have to give up on the vaccine and T-cell therapy if you are showing progression... sigh. __________________ 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."