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Old 04-23-2005, 09:59 PM   #1
Lolly
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Hello All,
Just rolled in from Seattle, 4th vaccine administered yesterday afternoon without incident. I'm having a mild reaction this time compared to last month, so far anyway. I was told I'm developing antibodies to HER2, that I'm one of the "responders", and that is very good news indeed!
Any questions or comments are welcome.

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Lolly
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Old 04-24-2005, 03:11 PM   #2
SusanAnne
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Hi Lolly,

So you're a "RESPONDER"! Very wonderful news indeed. I guess that's kinda like hearing that your "NED" after treatment. I do have a question for you if I may. How long does your trial say the lasting response is after all vaccines are given?

Susan
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Old 04-24-2005, 06:00 PM   #3
linda
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Dear Lolly
That must feel so good to be told you are responding. I am so pleased for you.
love
lindaw
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Old 04-24-2005, 06:43 PM   #4
al from canada
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Hi Lolly,
I'd love to make some kind of a "Smart-assed comment" about being a responder but for now, I'll bite my tongue. Anyways, congrats and I hope that this continues. Question: is the skin response the only measure they use for HER2 response?
Take care,
Al
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Old 04-24-2005, 07:20 PM   #5
mamacze
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Hi Lolly!
Welcome Back and Congratulations!!! I am heading out tomorrow for my 3rd visit on Tuesday morning. When do they let you know if you are a responder? Lets compare notes on Thursday. (ps Al, no need to bite your tongue around friends...!)
Love Kim
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Old 04-25-2005, 10:09 PM   #6
Lolly
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Al, I'd love to know hear your comment, I like a good laugh! And thanks, Linda, it does feel good to know that my immune system is doing it's job. To answer your questions;

Susan, I was told that once the immune system makes these antibodies, they are my system for good. Whether that translates into improved disease free survival remains to be seen. They also said there's the possibility of "booster shots" down the road, as they'll be following the group for 5 years.

Al, when I had my first visit they took quite a large blood draw and looked at my antibody levels before starting the vaccine. They told me at this visit that I actually had some natural immunity to HER2, so my immune system has been doing it's job even without the vaccine. At the third visit last month they took another large blood draw and again measured the HER2 antibody levels, which were appreciably higher...They're going to print out a graph for me at my next visit. That will be neat!

Kim, they'll do a big blood draw at this 3rd visit, and next month will be able to tell you how your're responding. They told me last month not to be dissapointed if I hadn't developed much response yet, as it sometimes takes longer for some to build the antibodies. Good luck on your visit, and hope the weather is as gorgeous for you as it was for us!
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Old 04-26-2005, 07:25 AM   #7
*_lorri_*
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Hi Lolly, I to am very interested in the vaccine I always felt the immune system plays an important role in cancer. The vaccine sounds promising. Couple of questions? What is HLA-A-2? Is Seattle still recruiting? I still have another 3Mts or so with Navelbine/Herceptin. Eligibility is to be off chemo and in remission. My last ct of liver showed even further regression of multiple lesions. I do believe this is the trial I'd like to do. Thanks for all your infomative responses and resources you add to this support group. lorri
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Old 04-26-2005, 09:23 AM   #8
Lolly
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Hi Lorri; I don't know if recruitment is still open for this vaccine trial, but you could e-mail Patty Fintak, the Patient Coordinator, and find out. Her contact info is included on the trial outline page. If they are still open, it would be a good idea to ask your onc to start the process now they will start a file on you and if everything falls into place you'll be on the "list"(sort of an unofficial priority placement). The first thing of course is to determine HLA-A2 status, which is done by a blood test. Here's a bit of info I copied off a web site for organ transplants, the test is usually done to help establish compatability for donors:

Histocompatibility Testing: Clinical significance:
http://www.uphs.upenn.edu/path/LabSe...unology.html#3

"...HLA molecules are crucial in lymphocyte activation and immune recognition of class I and class II molecules can result in potent humoral and cellular responses that mediate allograft rejection. Matching for HLA is important in promoting the successful outcome of solid organ and allogeneic bone marrow transplants. The role of the histocompatibility laboratory is to assess the degree of HLA compatibility between the donor and the recipient and to determine, by serum screening and crossmatching, the presence of donor-specific antibodies in the recipient that might be harmful to the transplant..."


Also, to be elibible for the Phase I-II CTL Peptide vaccine study, you don't have to be NED in remission, you could also have Stable Disease, so definitely contact Patty and start the process if you feel you're having a good response to your treatment and will be eligible. Good luck!

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Lolly
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Old 04-27-2005, 10:19 AM   #9
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Lolly, what does that mean to be a "responder" ? Is it that you are showing the ability to block the her2 over-expression in some way?

Do you know what the % of vaccine participants that show a response?

Also, have any of the previous responders showed a continued response after their course of vaccines is over?

I have following this trial closely, since I did have a postive test result for the HLA A2 allele.

Thanks Lolly for your information!
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Old 04-27-2005, 10:42 AM   #10
Lolly
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Hi Esther; from my understanding, being a responder means the vaccine is stimulating my immune system to develop antibodies to the HER2 positive cancer cells, and hopefully these antibodies are attacking the cancer and therefore helping Herceptin to keep it under control. Time will tell.
I don't know what % of the current trial participants are responding, I will try to remember to ask next time I'm there, but I don't know if they can give that information yet.
However, the data from the 1996 group of Stage IV participants taking this same vaccine but WITHOUT Herceptin show a 38% survival rate which is generating a lot of excitement at UW and elsewhere, as survival stats for Stage IV disease are historically around 10%.
I hope this is helpful, are you considering enrolling in this trial? If so, best of luck, let me know if I can be of any help.

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Old 04-27-2005, 11:36 AM   #11
Cindi
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Lolly,

Major Congrats on being a RESPONDER!!! That is a great title to have.

Thanks for keeping us all posted on your progress. It's great information.

Cindi.
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Old 04-27-2005, 04:27 PM   #12
*_joy_*
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That is great news Lolly and thank you for bringing all of us on this adventure.
Love Joy
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Old 05-04-2005, 08:24 AM   #13
Cara
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Lolly

It's great to hear you are doing so well on this.
I follow your progress with great interest.
You, Kim and the others are true pioneers.

Cara
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Old 05-12-2005, 12:37 AM   #14
gillian
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Hi Lolly

I am very pleased to read about you being one of the responders, I wonder if i can ask you a couple of things:

. Have had breast caner (1 tumour and 1 node this time last year removed. Had six rounds of chemo plus 20 rads. Last Jan found three more nodes in same armpit (all HER2 neu +++) and now started this weekly treatment of herceptin plus Taxotere every fourth week. Just now i had a call from my onc who tells me he might be seeing another node on my latest scan. He wants to compare it to my last scan taken before surgery three months ago.

Im just wondering, if there is another node, does this mean it is not responding to the HErceptin or what? I am worried, thinking that nothing is going to work on me... also re this vaccine you are on, would it be of any help to me do you think? Its not available here, I live in Malta (Europe) although maybe i could be included in a trial. would have to check

pls help

thanks

gillian
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Old 05-12-2005, 08:29 PM   #15
michele u
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Lolly,
I'm going to get the trial at Wash also!! But my trial is only 3 vaccines. Is the stage 4 trial 6 vaccines and the adjuvant trial 3?
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Old 09-24-2005, 02:47 PM   #16
uma
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Hi !, Lolly,
Good to hear your encouraging results. I have one question for my wife who had Breast Cancer of Her2/Neu and did Lumpectomy, RadiationAdriamycin, Taxol and finally Herceptin for 52 weeks for Adjuvant in trials. All over successfully She is out of BC, and doing fine She had MRI's, Echo cardiograms, mammograms etc. All Ok. Her tumor marker (CA27-29) is 18. so for all practical purposes she is OK. However, due to the fear of HER2/Neu coming back, we need to go in for the E75 vaccine. Our question is: Is this vaccine for Adjuvant purpose ?, if so how safe is it ?. Did you get it for Adjuvant treatment ?.
Rama
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Old 09-28-2005, 07:50 AM   #17
Lolly
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Rama, I'm not familiar with the E57 vaccine, but the HER2 CTL vaccine trial I was in was designed to study the saftey of this vaccine in women also on Herceptin so yes, it was as an adjuvant treatment. The vaccine was trialed in an earlier group of women NOT on any other therapy, and proved safe, so the next step is testing saftey in conjunction with Herceptin. The trial is still accruing Stage III and IV volunteers; one must have No Evidence of Disease or Stable Disease, and a month out from last chemo.
There are also other trials at University of Washington involving this and other similar vaccines, so if you need more information you should feel free to contact Patty Fintak, the Research Coordinator; she's extremely helpful and will give you lots of info:

Patricia Fintak, Research Coordinator
1-206-543-6620
paf3@u.washington.edu


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Old 09-30-2005, 05:54 AM   #18
uma
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gillian,
Good you will be on Herceptin. Right choice. I am sure it will definitely remove all traces of HER2/Neu, because it did for my wife. I have a simple question for you: When your onc saw another node on your latest scan, what scan is it ?. Is it an MRI ?. Did he test with tumour marker (CA27-29) ?. Did he do needle biopsy, because our onc says there is no other method to make absoutely sure. The scans and test also give false alarms
Rama
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