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Old 06-30-2010, 05:44 PM   #23
CourtneyL
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Join Date: Aug 2008
Location: San Francisco
Posts: 260
Re: Treatment Decision Time

So here is the latest after speaking with both Dr. Salazar at U of W and my own oncologist, Dr. Smith, here in San Francisco. They were both in total agreement that, even if I weren't on the trial, they would not recommend starting systemic chemotherapy at this point. They would watch and wait since some of the bones are improving and only a few aren't. They both agree with the switch to Denosumab to see what it can do.

And they both agree that since systemic treatment isn't really needed at this time, that I should absolutely proceed with the t-cell therapy at this time. Dr. Salazar even thinks that the vaccine and immune response could be responsible for some of the flair up. I don't exactly understand the mechanism of action for this but my oncologist analogized it by saying that it was like dumping lighter fluid on the bone mets - they flared up but they will die down and hopefully go away completely with the t-cell therapy.

So that's the deal. The apparent progression may be caused by the vaccine and immune response itself. It doesn't necessarily mean the vaccine is not working. They've seen this kind of inflammation before and are not concerned. They make it sound so simple and matter of fact. But there lack of concern (not for me but for the results of the PET) really put me at ease and made me agree that it isn't time to bring out the big chemo guns right now.

Thank you all so much for your input. It was immeasurably helpful in helping me to sort this all out. I went in with the right questions thanks to you and that made all the difference in the world.

The plan is to unthaw the t-cells in the next week or so and go for the t-cell injections over a three week period in August. Looking forward to another fun visit with you StephN! I'll let you know when I've got some confirmed dates.
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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.
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