HER2 Support Group Forums - View Single Post

Cat · 08-10-2013, 07:37 AM

Hi All,
I've been away for a while. My MRI showed bandlike areas on the outside of the cerebellum and ALL Docs felt it didn't look like typical mets. The neurosurgeon said given my history lets do craniotomy to make sure. Well it was breast CA (I understand it's better than my renal going there). I had my craniotomy on 7-30, got to my room at 7:30 PM, and was discharged to home 7-1 in the afternoon so that part went well. Weaning off the dex not so much (I feel for you Denise and anyone else who had/has to go through that) and I wasn't on all that much.
We have talked follow up radiation and WBRT seems to be the choice of Docs so far. I see my rad onc on Tue 7-13 to discuss it.
I have read about all the long standing permanent issues and future problems accociated with it and it is very scary. Obviously I want the best chance at no recurrence but not at the expense of who I am and what I can physically do. It's kind of vain but my hair just started growing back after 1 1/2 years and it's been so nice, I hate the thought of permanent hair loss.
I know there must be sisters who have had or know of experience with this and would love some input and maybe a little hope.
Hugs to all,
Cathy

08-10-2013, 07:37 AM	#1
Cat Senior Member Join Date: May 2010 Posts: 184	WBRT ???? info input ?? Hi All, I've been away for a while. My MRI showed bandlike areas on the outside of the cerebellum and ALL Docs felt it didn't look like typical mets. The neurosurgeon said given my history lets do craniotomy to make sure. Well it was breast CA (I understand it's better than my renal going there). I had my craniotomy on 7-30, got to my room at 7:30 PM, and was discharged to home 7-1 in the afternoon so that part went well. Weaning off the dex not so much (I feel for you Denise and anyone else who had/has to go through that) and I wasn't on all that much. We have talked follow up radiation and WBRT seems to be the choice of Docs so far. I see my rad onc on Tue 7-13 to discuss it. I have read about all the long standing permanent issues and future problems accociated with it and it is very scary. Obviously I want the best chance at no recurrence but not at the expense of who I am and what I can physically do. It's kind of vain but my hair just started growing back after 1 1/2 years and it's been so nice, I hate the thought of permanent hair loss. I know there must be sisters who have had or know of experience with this and would love some input and maybe a little hope. Hugs to all, 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