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hutchibk · 07-28-2008, 02:58 PM

Mary Jeanne - you are the exact candidate for Tykerb/Xeloda. Xeloda is a chemo that works in the body and also crosses the blood brain barrier with the Tykerb. I would be curious as to the reason your doc is not considering Xeloda. The combo of the two is synergistic and would potentially treat your body mets as well as brain mets. I have been on T/X for 15 months for three 8-9mm and 5 'punctate' brain mets. In my case, it rendered them inactive after just 4 months on the combo and they have remained inactive ever since, as well as keeping any mets in the body at bay. We did discover a very small bone met on my right iliac wing last month and started treating with Zometa as well. If that doesn't attend to that one, we are talking about adding Herceptin back in along with my Tykerb/Xeloda. It was my decision to try this combo first before signing on for Whole Brain Radiation, and I am very happy that we tried this first. I have been able to save WBR for a last resort, if ever necessary. Please talk to your doctor about all of the options and don't wait too long... Best of luck! Let us know what you learn and decide to do.

Also, I had little side effect from the combo for the first couple of months, and ever since have had vitually no side effect. Not everyone has the same experience or result, but it is a powerful option in our fight and well worth considering, in my opinion.

07-28-2008, 02:58 PM	#3
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	Mary Jeanne - you are the exact candidate for Tykerb/Xeloda. Xeloda is a chemo that works in the body and also crosses the blood brain barrier with the Tykerb. I would be curious as to the reason your doc is not considering Xeloda. The combo of the two is synergistic and would potentially treat your body mets as well as brain mets. I have been on T/X for 15 months for three 8-9mm and 5 'punctate' brain mets. In my case, it rendered them inactive after just 4 months on the combo and they have remained inactive ever since, as well as keeping any mets in the body at bay. We did discover a very small bone met on my right iliac wing last month and started treating with Zometa as well. If that doesn't attend to that one, we are talking about adding Herceptin back in along with my Tykerb/Xeloda. It was my decision to try this combo first before signing on for Whole Brain Radiation, and I am very happy that we tried this first. I have been able to save WBR for a last resort, if ever necessary. Please talk to your doctor about all of the options and don't wait too long... Best of luck! Let us know what you learn and decide to do. Also, I had little side effect from the combo for the first couple of months, and ever since have had vitually no side effect. Not everyone has the same experience or result, but it is a powerful option in our fight and well worth considering, in my opinion. __________________ 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; 07-28-2008 at 03:01 PM..