completed 1st vaccine in Seattle

Hi all,

Well Caryn got her first of 6 vaccines in the UWA trial and I wanted to quickly share our experience as promised. The people there are absolutely wonderful. They seem to really care and appreciate their patients and have great pride in their program, despite the negative press that vaccines seem to get for breast cancer. I apologize for not having pictures of the staff but the camera I brought uses a rechargeable battery and I forgot the charger! Pics will be taken on the next trip.

The group that took care of my wife consisted of Dr. Webster, Doreen Higgins and Erlynn (? spelling). Dr. Disis also stopped by to say hello and introduce herself. In all, they have a staff of about 30 which includes the people in the research facility. They encourage patients to visit the facility (another building) to give these people an opportunity to meet the patients. According to Dr Webster and Dr Disis the people in the labs really get excited when they have visitors.

As far as the trial that my wife is in (118), they have over 19 people (all stage 4) enrolled and have not seen any recurrances in 18 months! No side effets of any consequence to mention, although my wife did have terrible stomach cramps about 3 hours after the vaccine. They lasted for about an hour and our feeling was that it was probably more related to the way she was feeling prior to the vaccine. She seemed to have caught a mild bug from my son and the antibiotic she was on might have played a role as well.

The day started out with a lengthy discussion of the trial to make sure that Caryn understood everything. She then had a chest x-ray, ekg, physical and review of medical history before having a bunch of blood drawn. The blood is used to establish a baseline to measure changes in her future immune responses as a result of the vaccines. She then had a tetanus shot and the vaccine itself which consisted of 3 shots (only because the volume could not fit into one syringe). Outside of the tetanus shot, which was injected into her thigh muscle, it was pretty easy (easy for me to say!). After them observing her for 60 minutes we were free to go.


I hope this helped and and I welcome any questions from anyone that might be considering this trial.

Best to all,
Eric

Eric,

Your wife is so fortunate to have your love and support. Curious, how far do you all have to travel to Seattle?

Love and light,

Lisa

is this trial only for stage IV or is it also for early stage IIA as well? Any contact numbers will be appreciated.

Lisa, thanks for the kind words. We travelled from NJ; a pain in the neck but hopefully well worth it.

Guest: I would be surprised if they didn't have a trial available to you. The best person to contact is probably...

Patty Fintak
Research Coordinator, Tumor Vaccine Group
University of Washington
(206) 543-6620
paf3@u.washington.edu

Do you know if anyone in this vaccine trial has had brain mets and is now doing well?

My sister had a craniotomy to remove a large tumor last October -- the 3 small remaining lesions were treated with Whole Brain Radiation Therapy. That almost eliminated the lesions, but they began to slowly come back. She went on the Lapatinib trial mid-winter, and while we know of a Her2 patient for whom the Lapatinib is working wonderfully at reducing/eliminating brain lesions, it did not work for my sister. She has been on Herceptin since a mastectomy in '04, but it doesn't cross the blood/brain barrier. Her CTScan and MRI showed that the rest of her body was clear and there were no new lesions in her brain, just the 3 smaller ones seen in October returning. Her neurosurgeon removed the remaining 3 lesions in May, she had Stereotactic Radiation to the cavity areas, and for now she is NED.

I'd like to know if there is any indication that the vaccine can get through the blood/brain barrier and protect the brain.

Heartfelt thanks to you all.

Marianne B.

Dear Eric and Caryn,

We are both so happy for you and wish you both the best in this trial! We can't wait until Linda's tumor load is reduced so we can join you.

All the best to both of you from Al and Linda

[Lolly]

Eric and Caryn, thanks for the detailed update on your visit! I agree with you 100%, the folks there are awsome!

<3,
Lolly

Marianne B., I don't believe that this particular trial allows brain mets but I would call Patty to make sure or to see if there is another available.
Patty Fintak
Research Coordinator, Tumor Vaccine Group
University of Washington
(206) 543-6620
paf3@u.washington.edu


Al, looking forward to seeing you and Linda in Seattle.