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Old 06-15-2010, 11:57 AM   #12
CourtneyL
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Join Date: Aug 2008
Location: San Francisco
Posts: 260
Re: Sorry to bring it up again but.....Peptide Vaccine in Seattle

Hi Jacqui - I am currently enrolled in the peptide-based HER2 vaccine trial at the University of Washington. So far I have been to Seattle 4 times - the first three trips were for the vaccine injections themselves. Other than a little tenderness at the injection site, and a brief case of shingles that may or may not have been related to the vaccine, I haven't had any complications. My fourth trip, a few weeks ago, was for the leukapheresis where they extracted my white blood cells through what was essentially a large centrifuge machine. That procedure was a little more involved since I had to have a catheter placed in my neck because my veins weren't big enough. Not everyone needs the catheter though. I was a little tired and groggy from the meds but otherwise felt fine the next day.

I will be returning in July for 3 more visits, 1 week apart, to receive my super-charged t-cells. I will also be receiving a baseline scan. From there it will be 3 more visits, spread out over several months, to receive the booster vaccine shots.

Its too early for me to know how my disease is responding to the treatment but as soon as I know, I will update you. Feel free to pm me with any specific questions.

The American Cancer Society offers free hotel rooms for patients traveling for treatment. Nicole can provide you with the paperwork necessary to get your free room!

I fly from San Francisco and usually catch a direct flight on Virgin American - its a nice airline and reasonably priced.

Good luck with your decision and let me know if I can answer any additional questions!

Re: how well does it work - they know that it works to trigger an immune response in nearly all the patients who have been on the trial. They don't know how long the immune response lasts and, from what I can tell, they don't necessarily know how robust the response is or can be. I had a pretty low burden of disease going in to the trial so I am hoping the immune response will be powerful enough to kill all the remaining cancer cells I have left and that it will last long enough to keep me NED forever!
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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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