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Re: I don't know what to say other than HELP !!!
Hi Jacqui - I am so sorry to read about your latest battle with brain mets. And I am also sorry that we never got to meet while I was also up in Seattle for the vaccine trial.
It seems that we have a lot in common - I too was on the vaccine trial and developed brain mets while on the trial. I have had two rounds of Gamma Knife since starting the trial. I am not entirely convinced that the vaccine is not working on the brain but I do think it takes some time to really start ramping up our immune systems. I'm still hoping for a miracle.
I hope you are able to find someplace to treat your brain mets with targeted radiation, such as Gamma Knife. It has been 100% effective for my brain mets. I have now had a total of 21 brain mets and all of them have been successfully treated with Gamma Knife. I am praying I don't get any additional brain mets but if I do, I am confident that we can blast them all with Gamma Knife.
If you would like to chat, let me know if you are on Skype. Holding you to the light and praying for a smoother ride ahead for you, my dear.
With love,
Courtney
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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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