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Lori R · 06-12-2010, 06:29 AM

Dear Joyce,
I am so sorry to hear that your daughter has to battle this frustratingly difficult disease.

While I have not had brain mets, I do chat with a woman at my Herceptin session who successfully went through whole brain radiation and is doing quite well. I've known her since the beginning of my treatment, so it's been at least 3 years since her WBR treatment.

Honestly...it sounds like it was a challenge, but she came out the other side is doing well. I understand the steroids (decadron) is one of the biggest challenges. Appears it is a necessary evil but required a lengthy transition off the steroids. I believe Kate took about 3 months off of work, but has since returned to her job and is a couple years from retirement.

Kate is a wonderful, caring person and I know would be willing to talk to you or your daughter. If you are interested, PM me with your contact information and I will try to get a hold of Kate if you'd like.

Many on this site have said this journey is a long distance event, not a sprint. Sometimes it is a matter of putting one foot in front of the other, even when it doesn't seem possible. But...soon the clouds part and you find you've survived.

Love....Lori

06-12-2010, 06:29 AM	#2
Lori R Senior Member Join Date: Jan 2008 Location: Evergreen, Colorado Posts: 454	Re: Recent brain mets help Dear Joyce, I am so sorry to hear that your daughter has to battle this frustratingly difficult disease. While I have not had brain mets, I do chat with a woman at my Herceptin session who successfully went through whole brain radiation and is doing quite well. I've known her since the beginning of my treatment, so it's been at least 3 years since her WBR treatment. Honestly...it sounds like it was a challenge, but she came out the other side is doing well. I understand the steroids (decadron) is one of the biggest challenges. Appears it is a necessary evil but required a lengthy transition off the steroids. I believe Kate took about 3 months off of work, but has since returned to her job and is a couple years from retirement. Kate is a wonderful, caring person and I know would be willing to talk to you or your daughter. If you are interested, PM me with your contact information and I will try to get a hold of Kate if you'd like. Many on this site have said this journey is a long distance event, not a sprint. Sometimes it is a matter of putting one foot in front of the other, even when it doesn't seem possible. But...soon the clouds part and you find you've survived. Love....Lori __________________ 2007 Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008 Feb-Complete 6 cycles- T&H- NED March - Continue - Herceptin Only April - Rads for 6 weeks 2009 Continue Herceptin - Continue NED April - Recurrance- 3 cm. Liver Met May - Cryosurgery June - November - Abraxane + Herceptin Aug - PET/CT - CTC = 0 Back to NED 2010 January - Continue NED July - Recurrance - 3 cm Liver Met CTC=1 August - Cryosurgery #2 August - November Navelbine November - Back to NED - End Navelbine 2011 Feb - Recur - 4 cm Liver Met - Same Left Lobe March Surgery it is -Couldn't get a clean margin July - Confirmed continued liver involvement August - Begin Herceptin + Tykerb October - Mixed results from H+T Add Abraxane + H + T - Nov - April 2012 January PET Scan - It's working!! April - Back to NED July - Recurrance August - Begin TDM-1 Trial (Taxol + TDM-1)