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Old 01-11-2011, 05:14 PM   #8
krisvell
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Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
Re: Encouragement needed to decide whether to join a vaccine trial

Marcia;
I am 1/2 way through a Vaccine Trial in Washington DC. While I can't weigh in on whether the one you are looking at is a good one, I can share with you how I decided to go for it. There were two trials that I qualified for and I chose the Walter Reed one because the side effects were not significant and it was a Phase II Trial and it didn't mention any terrible things that could happen to you. The sucky part is it's a randomized trial so I only have a 50% chance of getting it. I rationalized it was worth the time and travel expense to help others down the road. Some very brave ladies did that for us with Herceptin. The other trial I seriously considered; a DNA vaccine at Sloan mentioned there was a slight chance Herceptin could be rendered ineffective in the future. Although it was remote, it scared me. 'Lizabeth and Sandra from GA did the vaccine and gave me great insight and support. My sister in law is a cancer researcher and thought it was a good idea; couldn't hurt. I know someone (Kim) on this site who did a vaccine at the Univ of Washington and has been in remission a very long time in NED after having mets to the liver and lungs; Great Inspiration. After I decided, I met a lady who's also doing the vaccine; she's an OB/GYN and thinks it's worth it.
Oh Yeah; I found a youtube video from a Dr. at Brooke Army Medical Dr. who presented phase I results from the Trial.
I am not at all technical to understand the detail but my common sense is what led me to decide.
You'll know if it feels right. Feel free to contact me if you need any additional information. Good luck; you'll make the right decision.

Kris...
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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