HER2 Support Group Forums - View Single Post

rentrac · 10-08-2008, 07:06 PM

Haven't written in a while, but read when I can. Found this line especially interesting as I've been taking Tykerb/Xeloda for the last 1 1/2 years and took Herceptin for a year before that (with cisplatin and taxol at the beginning). I've also taken Zometa for the last year and for a year back in '04/'05. Allergies to the cisplatin & taxol, but the rest didn't cause any real problems for me. In fact, I believe Tykerb is the reason I've been limited to only two lesions for brain mets... everything else has grown so fast and in such numbers that it's been unreal. I'm also very happy that several small lesions in the right apex of the lung are now invisible to PET and CT. I think Tykerb/Xeloda had lot to do with that as well. Had GammaKnife x2 for the brain mets starting in 07... #2 apparently worked on the Temporal Lobe tumor, but not on the right cerebellar. My team wanted Whole Brain Radiation, but it seemed like the "end of the sentence" to me, so I chose craniotomy on the cerebellar lesion only. Had surgery on 8/08. It hasn't been as bad as I expected, though I'm walking around like I'm drunk - I think I need the drinks to go with it so I can at least have some fun! Meanwhile, I need advice for me. My only active spot for now appears to be the right internal mammary artery (PET x 2). If it is active next month my oncologist will start Herceptin again, and we have discussed CyberKnife. My question: is it time, instead, to have the second mastectomy and immediately have reconstruction on both sides? I've found an excellent surgeon for free DIEP and my back has been very vocal about hating mastectomies. Any experience or suggestions would really be great. Thanks!
Rentrac

10-08-2008, 07:06 PM	#19
rentrac Senior Member Join Date: May 2007 Location: Eastern NC Posts: 65	Haven't written in a while, but read when I can. Found this line especially interesting as I've been taking Tykerb/Xeloda for the last 1 1/2 years and took Herceptin for a year before that (with cisplatin and taxol at the beginning). I've also taken Zometa for the last year and for a year back in '04/'05. Allergies to the cisplatin & taxol, but the rest didn't cause any real problems for me. In fact, I believe Tykerb is the reason I've been limited to only two lesions for brain mets... everything else has grown so fast and in such numbers that it's been unreal. I'm also very happy that several small lesions in the right apex of the lung are now invisible to PET and CT. I think Tykerb/Xeloda had lot to do with that as well. Had GammaKnife x2 for the brain mets starting in 07... #2 apparently worked on the Temporal Lobe tumor, but not on the right cerebellar. My team wanted Whole Brain Radiation, but it seemed like the "end of the sentence" to me, so I chose craniotomy on the cerebellar lesion only. Had surgery on 8/08. It hasn't been as bad as I expected, though I'm walking around like I'm drunk - I think I need the drinks to go with it so I can at least have some fun! Meanwhile, I need advice for me. My only active spot for now appears to be the right internal mammary artery (PET x 2). If it is active next month my oncologist will start Herceptin again, and we have discussed CyberKnife. My question: is it time, instead, to have the second mastectomy and immediately have reconstruction on both sides? I've found an excellent surgeon for free DIEP and my back has been very vocal about hating mastectomies. Any experience or suggestions would really be great. Thanks! Rentrac __________________ Oct. 2003: Dx age 48, Stage IIIA Ductal Ca. dense dose neoadjuvent AC. BrCa 1&2 -, ER+, PR-, Her2+. 2004: R mastectomy, 3+ nodes, dense doseTaxotere ( allergic), total hysterectomy, radiationx36 . Tamoxifen x6 mo., Arimidex x9 mo. Jan. '06: Multi left metastatic nodes left neck. Stage IV. Taxol, Carboplatin (allergic to both), Herceptin, radiationx27. Herceptin cont'd. 1 mediastinal met in old rad field. April: 2 brain mets - Rcerebellar, Ltemporal lobe. Gammaknife. Stop Herceptin, Start Tykerb. May: CyberKnife-mediastinal node, Zometa restart. July: New RLung mets. Xeloda add. Jan. 2008: CT: Lung mets shrinking. Fatty liver w/increased liver function panel. Feb '08: MRI: brain mets back, 2nd GammaKnife. June: Migraine headaches from cerebellar tumor. Team for WBR - Choose Craniotomy on Cerebellum only. Aug: Crainiotomy successful. Sept: PET -right lung apex clean; left internal mammary artery appears malignant. Herceptin in future. Left mastectomy?