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Lolly
01-14-2005, 09:58 PM
I received confirmation today that my first appointment for the Her2 Vaccine is indeed scheduled for next Wednesday, January 19th...WhooHoo!
It's been a long journey...I started discussing this trial with my oncologis last spring, shortly after beginning treatment for my second recurrence. He and his nurse have been tireless in making sure all the i's were dotted and the t's stayed crossed. It's a wonderful opportunity to contribute to the data on this new, very promising treatment. Seattle here we come!
Will keep you all posted.

Love, Lolly

Kristen
01-14-2005, 10:56 PM
Dear Lolly,

I wish you the best of luck and pray that this vaccine will help so many of us. Please keep us posted. Thank you for being such a brave pioneer. K

micheleu
01-14-2005, 11:20 PM
Lolly,
Could you email me your email address? I have some questions for you. My email is mulmer@mainstaycomm.net. I want to get into a vaccine trial, and i'm having a hard time deciding which one

Lyn
01-15-2005, 02:19 AM
Hi Lolly, that is brilliant, problem is how many years am I going to have to wait to get it here in OZ, which actual vaccine drug will you be on or does it have a number to keep us guessing.

Love & Hugs Lyn

Esther
01-15-2005, 03:20 AM
Wow that's great Lolly! Keep us posted on how things go. Which vaccine study are you going into?

I have been looking at the one for stage 4 in conjunction with herceptin.

Sandy H.
01-15-2005, 07:27 AM
Esther its good to see you posting again. I am glad you continue to do well. Missed saying good by to you in San Antionio! As for the vaccine I check on the one in Seattle but I did not qualify for it as she told me I am not a stage 4. You need to be on Herceptin, stage 4 and NED. You can call Lupe G. Salazar, M.D. of the tumor vaccine group, her number is 206-616-8503 at U of W. her e-mail is lsalazar@u.washington.edu I talked to her about 45 minutes and learned some things I did not know. I liked her very much and wished she was my onologist. She said even though I did not qualify at this time she would file my name and someone would call me once a month for an update to see if things changed and I can do the vaccine. I couldn't ask for more then that. She is the one that gave me the information in San Antionio! It maybe worth checking out. Hugs, Sandy

al from canada
01-15-2005, 09:02 AM
Congratulations Lolly,
Linda is currently in the application process for this trial. She gets her HLA testing next week.Be great if we saw you there.
Good Luck,
Al

*_Annemarie_*
01-15-2005, 10:01 AM
Great news. I got a call yesterday that I do not qualify because of my gene markers in the blood test. HLA. Maybe as time goes by they will open this trial up to more pts..

*_Lolly_*
01-15-2005, 10:28 AM
Thanks all; to answer some of the questions:

Lyn: it's trial #038845B01. I don't know how these things work for sure, but will try to find out if there is any indication that one of the teaching hospitals in OZ will be starting up a trial, will let you know.

Annmarie: contact Dr. Salazar at UW and ask to be put on the call-back list for updates, as when I spoke with her last month she said there will be a trial opening up sometime this spring, for those not HLA A2+. There are some restrictions regarding initiation of Herceptin use.

Esther: I'm Stage 4 on Herceptin also, and will be in the Her2 Vaccine with Herceptin trial.

Here's a link to the Tumor Vaccine Group's page listing all the current trials, the contact info is available for each...

http://depts.washington.edu/tumorvac/clinicaltrials.html

Lisa
01-15-2005, 10:29 AM
Do this for all of us! Can you please remind us (me) about the details/requirements of the trial?

Love and light,

Lisa

*_Lolly_*
01-15-2005, 10:31 AM
Al, thanks, didn't mean to leave you out and I'll be keeping my fingers crossed for Linda!
Lolly

*_Lolly_*
01-15-2005, 10:39 AM
Lisa, here's a direct link to the details on this trial, and an excerpt...

http://www.medical.washington.edu/studies/...study=038845B01 (http://www.medical.washington.edu/studies/study_details.asp?study=038845B01)

"...This study is looking to see if we can use your own immune system to destroy cancer cells by recognizing a protein on the cancer cells called HER-2/neu. In normal cells HER-2/neu helps signal the cells to grow and reproduce. But, in the type of cancer that you have, the cancer cells produce too much of HER-2/neu, causing them to grow uncontrollably. One way to stop the uncontrolled growth of these cells might be to encourage your own immune system to generate an immune response against the HER2 protein. This may be done by immunizing you with a vaccine against HER2. This is a phase I/II study designed to evaluate the safety and potential anti-tumor effects of a HER-2/neu peptide-based vaccine..."


Eligibility Criteria:

1. Volunteers must be at least 18 years old.
2. Both males and females are eligible to participate.
3. Volunteers must have metastatic breast cancer or ovarian cancer in remission.
4. Volunteers must be taking Herceptin.
5. Volunteers must be off chemotherapy and steroid therapy.
6. Volunteers must be HLA-A2.

Mickey
01-15-2005, 04:05 PM
Lolly, I am so happy you will be going to Seattle. You are so active in this group and there is no one that would help all of us there better than you. I am looking forward to hearing how you are doing. I just got the word yesterday that I am NED from the neck down. Lungs and Lymphs clear. My brain MRI is scheduled for Jan. 25. I had Novalis treatment in December. Am waiting to hear HLA statis and I hope to join you in Seattle. You go , girl!!!!
Mickey

Lolly
01-16-2005, 11:36 AM
Mickey, that's GREAT NEWS! Keeping my fingers crossed on the HLA results, hope you get good news :)

Love, Lolly

al from canada
01-16-2005, 12:29 PM
Clarification on eligibility criteria:
Participants must be in remission also includes "stable disease"

AlaskaAngel
01-16-2005, 01:08 PM
GO LOLLY GO!!!!

XXXX OOOO

AlaskaAngel

Sandy H.
01-16-2005, 02:15 PM
Is this the one where you need to be stage 4? Sandy

al from canada
01-16-2005, 03:22 PM
Yes, stage 4

Linda in Calif
01-16-2005, 08:02 PM
Hey Lolly: Great news!!! I'm sure Snoopy is doing his dance for you, I know I am. Keep us updated as to how things are going. Take Care, Linda

*_Martha_*
01-16-2005, 11:40 PM
Hi there,

This is the first time I'm hearing so much about this vaccine. I've never heard of it before. Is Seattle the only place this is available?

I am Stage IV, with IBC, Her2+, mets to nodes behind clavicle and under right arm (cancer originated in left breast). I am 34 with your small children and desperate for any chance at some more time with my children. I am currently in a trial with a medicine called GW572016 and Herceptin. It appears that the GW has made my tumors shrink but we get the technical scans on the 27th of this month and the reading on the 3rd of Feb.

If the GW has in fact shrunk my tumors so that they are no longer visible, would I qualify for this vaccine? I've been told I have about a year of survival time left and that the only things left to give me are navelbine and gemzar, I've used everything else and none of it worked. Please contact me with any information you think might be useful to me.

My email is FisherRN2B@aol.com

All my Blessings,
Martha

Lolly
01-17-2005, 09:50 AM
Martha, here's a link to University of Washington vaccine trial that I hope to enroll in:

http://www.medical.washington.edu/studies/...study=038845B01 (http://www.medical.washington.edu/studies/study_details.asp?study=038845B01)

1.You must be Stage 4, be off chemo for 1 month and have documentation from your oncologist that your disease is either stable or in remission.
2.You must be on maintenance Herceptin.
3.You must demonstrate adequate heart function by MUGA.

I think this is the only trial open right now that allows concurrent Herceptin use. Also, you may have to be out from your current trial by a certain length of time...get in touch with Patty Fintak, her contact information is provided, and GOOD LUCK!

Love, Lolly

Lolly
01-17-2005, 09:52 AM
Martha, P.S. I forgot to add you must be HLA-A2 positive, your onc can order that test for you when you have your next blood draw.
Lolly

lindaw
01-17-2005, 07:11 PM
Great news Lolly

It would be great to find out if it will be available anywhere in Australia. I keep asking here but no-one knows .I am so excited asnd pleased for you.
love
Lindaw

Cindi
01-18-2005, 07:54 AM
Lolly,

Way to Go!!!!!!!!!!!! So glad that you have pursued this and it is set to begin soon. How exciting. I am very interested in the vaccines.

Looking forward to the news you bring to us after you begin.

You rock!

Cindi.

mamacze
01-20-2005, 08:44 AM
Hey Lolly!
Thank you for sharing the good news of your participation in the Seattle clinical trial. My medical records were sent out there to Patty last week so everyone please add me to your prayer list and keep fingers and toes crossed that I can participate...with a little luck, Lolly, I will see you there!
((hugs)) and peace to all,
Kim (from CT)