HER2 Support Group Forums - View Single Post

CourtneyL · 10-27-2010, 10:26 AM

Oh Deena my dear, I am so sorry you are in such limbo right now. I just sent you an email before reading all of this.

My two cents - why haven't they done a PET scan? This will show whether the spots in your liver/lung are metabolically active and likely to be cancer. A CT is not enough. It only shows masses but does not indicate whether they are actually cancer (as you know). I'd ask your onc to send you for a PET pronto. If it is mets, then I am in favor of postponing radiation in favor of a systemic treatment. The radiation will do nothing to treat the mets and this should be your primary focus - controlling regional spread. Lots of great options for systemic control. Tykerb is a great option as is T-DM1. I'm sure when you meet with Melisko next week she will help you sort out all of the available treatments. Gemzar is also a good chemo option, paired with Herceptin. You could receive it locally (as opposed to going to Chicago) as it is an approved therapy for breast cancer. I did it for 6 months and it cleared up my lung involvement with minimal side effects.

Hang in there, sweet girl. The answers will come.

10-27-2010, 10:26 AM	#5
CourtneyL Senior Member Join Date: Aug 2008 Location: San Francisco Posts: 260	Re: I could really use some input Oh Deena my dear, I am so sorry you are in such limbo right now. I just sent you an email before reading all of this. My two cents - why haven't they done a PET scan? This will show whether the spots in your liver/lung are metabolically active and likely to be cancer. A CT is not enough. It only shows masses but does not indicate whether they are actually cancer (as you know). I'd ask your onc to send you for a PET pronto. If it is mets, then I am in favor of postponing radiation in favor of a systemic treatment. The radiation will do nothing to treat the mets and this should be your primary focus - controlling regional spread. Lots of great options for systemic control. Tykerb is a great option as is T-DM1. I'm sure when you meet with Melisko next week she will help you sort out all of the available treatments. Gemzar is also a good chemo option, paired with Herceptin. You could receive it locally (as opposed to going to Chicago) as it is an approved therapy for breast cancer. I did it for 6 months and it cleared up my lung involvement with minimal side effects. Hang in there, sweet girl. The answers will come. __________________ 4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++ April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response! Sept 08-Dec 08: Herceptin +Zometa for maintenance. Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait. April 09: Gamma Knife 10 brain mets, add Xeloda. Sept 09: Gamma Knife to 1 brain met. Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa. May 10- Sept 10: HER2 Vaccine Trial Sept 10: Add Tykerb for more brain mets. Oct 10: Gamma Knife to 7 brain mets. Dec 10: Switch from Zometa to Denosumab. Jan 11: Gamma Knife to 3 brain mets. March 11: Gemzar/Herceptin for lung/bone progression. April 11: More brain mets - Intrathecal Herceptin June 11: Ixempra/Herceptin for lung, soft tissue progression. Aug 11: Gamma Knife Sep 11: Abraxane/Herceptin Future: NED Send me a PM if you'd like to follow my journey on Caringbridge.