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Old 01-20-2005, 05:11 PM   #1
Lolly
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Hello All, I am officially enrolled in the Her2 Vaccine/Herceptin trial at UW in Seattle!

The day was long, 10:00 - 4:30. I met Dr. Disius and Dr. Salazar, then the first hour+ was spent with Dr. Salazar, reviewing the consent agreement and having any questions answered and signing the forms. Then had an exam, chest x-ray, height, weight etc. Then, lunch. Then, blood, LOTS of blood, was drawn. Then, THE VACCINE! After that, the observation period, which was very enjoyably spent visiting with Steph and hearing about SABCS in more detail, plus just sitting and grinning at each other! And then I was released to go home...The staff is superb, I felt very pampered.

Today, I feel ok, just slightly tired which may be a result of the vaccine or the trip, won't know until tomorrow. The injection site is slightly reddened and rashy, but not painful, really, all to be expected and actually a good thing as it indicates, YES, an immune response! I was told that with each successive vaccine, the reaction may get stronger as the antibodies build up in my system. Dr. Salazar asked me to keep a log of my reaction and symptoms, and bring it next visit.

All in all, a very positive experience. Of course, we're hoping this translates into long-term NED, but also I am so happy to contribute to the data, and to know that I may be helping to bring the vaccine into clinical use.

Will keep you posted.
Love, Lolly
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Old 01-20-2005, 05:19 PM   #2
Lolly
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P.S. Also received a tetanus shot; if you haven't had one in the last six months they like to give it as a "positive control". If you show response to the tetanus vaccine, it indicates your immune function is good and it can be used as a gauge against the Her2 vaccine response. If you have had one recently, you can still receive the Her2 vaccine, all other criteria being met.
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Old 01-21-2005, 05:49 AM   #3
*_Tessa_*
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Hi Lolly,

I am in Germany and completed the HERA trial here just over a year ago. Medical care here, while highly competent - I hope -, does not seem to be as active and personal as what women report on this site.

So far I have had no recurrences ( HER2+++, tiny primary tumor but affected nodes by the time it was discovered, lumpectomy, 16 nodes removed, 10 positive; doxirubicin plus taxotere given 3 times, then 6 weeks of radiation, then 3 more times and then I fought to get in the HERA study and was randomized into the one year arm), but I would very much like to know what the criteria are for getting the vaccine.

Thanks very much, and may it prove to be the miracle we all hope for,

Tessa
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Old 01-21-2005, 11:18 AM   #4
Lolly
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Hi Tessa, Congratulations on completing the HERA trial! Hope you will keep us posted on how you do. If you click on the "News" page under the picture banner above, it will take you to links of trial's that are of particular interest to the HER2+ community. There are 2 University of Washington trials posted; I'm in the Herceptin/Vaccine trial which requires Stage 4 disease that is stable or in remission, and requires Herceptin use while taking the vaccine. The other trial allows Stage 3-4, in remission and off of chemotherapy, steriods and Herceptin for at least a month. These 2 trials are only being conducted at University of Washington in Seattle, so you would have to travel here to participate. Good Luck!

Love, Lolly
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Old 01-22-2005, 09:15 AM   #5
*_Tessa_*
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Hi Lolly,

Thanks for your answer. In the meantime I have figured out how to navigate around the site a bit better so I can keep track of the clinical trials. I only found out about the HERA study because a woman I used to see every day in radiation went to a meeting where it was mentioned and happened to tell me about it. European medicine seems a bit fatalistic to me, not as helpful and proactive as - at least the best of - American medicine. I basically don't even have a doctor, I just go in every 3 - 6 months for some combination of tests. The only doctor who knows as much as i do about Her2 seems to be the cardiologist. I think the doctors tend to find my American energy level a bit disquieting, challenging to what is still, here, the doctor as unquestioned authority.

Anyway, I am glad I found this site and thanks again,

Tessa
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Old 01-22-2005, 02:05 PM   #6
Bruce
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Hi Lolly:

Just read your article and Vaccine Trial your going through.
We live very near the U of W where this trial is taking place and I'm very interested in it. Can you tell me more about it such as are you part of a Phase I, II or III trial? What stage BC you are I III or IV? Was it hard to get in? did your doctor have to recommmend you? I really think you are in one of the Trials that will one day conquer this type of cancer. I think that it is all about the immune system and getting T cells to make the correct response to the HER/2neu gene.

Regards Bruce
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Old 01-22-2005, 06:45 PM   #7
Lolly
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Hi Bruce,
I'm in the Phase I-II trial which is only accepting Stage IV volunteers, that 's me. The criteria is pretty strict, documentation by scans is scrutinized carefully. My doctor did make the initial contact for me, and stayed in contact with UW as he was required to provide most of the documentation for qualification, plus fill out a medical history. He was very cooperative, that really helps!
I agree, the vaccines have great promise, and I've always believed my immune system is the main reason I'm a survivor!
If you click on the "News" page under the picture banner above, it will take you to links of trial's that are of particular interest to the HER2+ community. There are 2 UW trials posted. These 2 trials are only being conducted at UW so you are in the cat-birds seat!

Regards,
Lolly
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Old 01-23-2005, 01:57 PM   #8
Bruce
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Lolly

Thanks for the quick reply. Please keep us posted to your results I just know they will be good. My wife is stage IV also and we may press our doctor to get in the program. She just went through lung surgery prior to Thanksgiving and currently is taking Xoloda and herceptin along with zometa for bone strengthing.

regards Bruce
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Old 01-24-2005, 10:06 AM   #9
Lolly
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Bruce, I'll keep you posted. If your wife can reach stable disease status(be off chemotherapy for at least 30 days without progression prior to starting the vaccine) she could possibly get in....your doctor should check with Dr. Salazar to see if they will allow Zometa use while in the program. Best, best wishes to your wife, and keep me posted!

Love,
Lolly
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Old 01-24-2005, 11:29 PM   #10
*_Kim in CA_*
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Hi Lolly,

I sure am glad to hear you are in the trial. I really feel this is going to make a huge difference for many of us. I have not posted in quite a while but I thought I would drop in tonight because tomorrow I am off to Seattle for my last visit. They will be doing a big blood draw and physical exam and that's pretty much it!

I never really had any bad reactions other than some aches and pains after the first vaccination and then again after the last vaccination. Not a bad price to pay for such cutting edge technology!

Well, I must be off to bed, as we have an early flight out of Oakland tomorrow.

Best of Luck to you,

Kim
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Old 01-25-2005, 04:04 PM   #11
Lolly
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Kim, thanks for the words of encouragement, and BEST WISHES as you finish up the trial. I am hopeful also.

Love, Lolly
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Old 02-04-2005, 11:05 AM   #12
Isabelle
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Lolly,
I have been reading your posts on the U.WA. vaccine trials. I went to there website and there are two. Which one our you doing? I am going to my onc. on Monday to go over latest scan results. If all is still stable I want to discuss doing one of these trials. I have been on Herceptin/Navelbine for one year and think the plan is to continue just on the Herceptin.

Isabelle
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Old 02-04-2005, 11:08 AM   #13
Isabelle
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Sorry about the typos. I learned today to always proof my posts.
Isabelle
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Old 02-04-2005, 03:00 PM   #14
Lolly
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Isabelle, I'm in the Phase I-II Herceptin/Vaccine trial, which does allow stable disease if you have been off chemo for 30 days prior to entering the study and be on Herceptin while taking the vaccine. Here's the link from this site, the Research Nurse is Patty Fintak, and her contact information is provided. Good Luck!

http://www.medical.washington.edu/studies/...study=038845B01


Love, Lolly
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Old 03-11-2005, 02:46 PM   #15
leticiazarain
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Hello Tessa:

I also live in Germany and would really like to contact you!

If you want, you can answer to my E-mail or I will check this part of the chat again to see if you answered.
Bis bald,
Leticia
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