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Cat · 03-05-2014, 08:48 PM

Debsing, First, it all sounds so much scarier than it needs to. There are just so many treatments out there now.
I had 2 mets to cerebellum but because I had kidney cancer and they didn't appear as "normal" mets on CT, I had a craniotomy to biopsy and remove them followed by cyberknife to clean up after. I was on steroids (dexamethasone). before, during and after it all. I had a love hate relationship with the dex. It made me feel better but sleep was elusive. The weaning off the dex was not fun. The surgery was not as bad as anticipated up and about pretty quickly and the cyber after was not difficult at all. As far as survival, I plan on being around a long time even if they come back I know the treatments are all doable and mostly scary because it's the brain. I have read other people who had brain mets once, years ago and going strong. My comfort comes from knowing that cyberknife can be done over and over and I will have MRIS every 3 mos. so will probably catch anything early.
Also there is intrathecal herceptin now that I don't know much about but sounds very promising.
Keep your head about you (pun intended) and explore with your drs. the best action for your situation and meet it head on. Pun again?!?!?
Hugs and prayers, Cathy

03-05-2014, 08:48 PM	#2
Cat Senior Member Join Date: May 2010 Posts: 184	Re: experience with brain mets? Debsing, First, it all sounds so much scarier than it needs to. There are just so many treatments out there now. I had 2 mets to cerebellum but because I had kidney cancer and they didn't appear as "normal" mets on CT, I had a craniotomy to biopsy and remove them followed by cyberknife to clean up after. I was on steroids (dexamethasone). before, during and after it all. I had a love hate relationship with the dex. It made me feel better but sleep was elusive. The weaning off the dex was not fun. The surgery was not as bad as anticipated up and about pretty quickly and the cyber after was not difficult at all. As far as survival, I plan on being around a long time even if they come back I know the treatments are all doable and mostly scary because it's the brain. I have read other people who had brain mets once, years ago and going strong. My comfort comes from knowing that cyberknife can be done over and over and I will have MRIS every 3 mos. so will probably catch anything early. Also there is intrathecal herceptin now that I don't know much about but sounds very promising. Keep your head about you (pun intended) and explore with your drs. the best action for your situation and meet it head on. Pun again?!?!? Hugs and prayers, Cathy __________________ 3/06 DX stage III er-pr-her2+++ breast, 1+node age 49 and 364 days 3XAC 4X taxol and herceptin continue herceptin one year bilat mastectomy w/TRAM 32 rads 9/08 recurrance 4 sternal nodes mediastinoscopy, able to remove 3 taxotere, carboplatin, herceptin, x6 continue herceptin indefinately 5/10 recurrance in same node/area mediastinoscopy, removed nodes added tykerb 27 rads 10/18/10 PET shows inflammation no active disease 8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node. D/C xeloda due to toxicity 12/5 PET scan clear 2/2012 colon blockage, breast cancer (never thought it could go there! thought I was constipated) start abraxane, herceptin, continue tykerb 10/2012 Kidney ablation (renal CA!) 3/2013 CT and biopsy R kidney (BC met to R kidney) 4/4/2013 Begin Kadcyla 7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm Sept 4-6 post op cyberknife Sept 23 ablation right kidney (blow up pesky breast ca met) Oct headaches MRI Oct 10 (only surgical changes ! Yay!) Short of breath. CT, pulmonary function, echo New crap in right lung heart good. Pooh! 12/13 DC kadcyla. Begin halaven 2/14 MRI brain NED Yay! 4/3/14 CT mostly stable but breast mets r kidney growing 4/16/14 ablation right kidney again Continue halaven, tykerb dc halaven gemzar? 2nd opinion May 14