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04-18-2005, 10:53 AM
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#1
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Guest
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Hi Everyone,
I've been thinking that since I'm stage IIIa and don't qualify for preventive ongoing Herceptin (received a year thru a trial) that I'd check out vaccine trials. Doesn't sound like there's too many out there but it does seem like I fit the qualifications of the Windber, PA trial. I live on Long Island, NY. Anyone know of any trials I'm missing on the east coast? Anyone in the PA trial that can fill me in? What phase is it? Not sure what questions to ask frankly. Any help appreciated.
Thanks,
Susan
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04-19-2005, 04:46 AM
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#2
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Senior Member
Join Date: Nov 2004
Posts: 190
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Hi Susan,
I plan on participating in that trial starting in June or July. I had some very specific questions and Dr. Peoples got back to me personally. I am currently on Herceptin (stageIIIb) and I was trying to take the vaccine and Herceptin concurrently. At this time, I would not be able to because the FDA has not approved him to use both together. As of last week, however, he filed with the FDA to use them both because they have proved to be synergistic in the lab. I do not qualify for the seattle vaccine because I am HLA A3.
Read my post below "PA vaccine results thus far". If you have question, you can contact Maureen. I left her info below. I believe Dr. Peoples is anxious to enroll more previously Herceptin treated patients.
Maureen Pavlik, RN, BS, CCM
Vaccine Case Manager/JMBCC
Windber Medical Center
phone (814) 467-0044
toll free 866-253-4703
fax (814) 467-0725
Kim in DC
p.s. I'm originally from Freeport Long Island. I went to Baldwin High School
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04-19-2005, 01:41 PM
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#3
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Guest
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Hi Kim,
Thanks for the info. Could you tell me how you found out you were HLA A3? Have you gone to PA to meet Dr. Peoples? Are you in a trial getting your Herceptin or is your onc. giving it to you "off label"? So will you be ending your treatments soon or are you waiting until Dr. Peoples gets the FDA approval to get into the trial? Do you know of any other resources to find out details regarding this trial?
Sorry for so many questions, I'm just starting to get excited about possibly doing this. You never know, maybe we'll start together!
Thanks,
Susan
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04-22-2005, 06:36 PM
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#4
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Guest
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Susan,
Sorry for taking so long to repy.
1.) I took the HLA A3 test in my onc's office. It is a common test for organ transplants. Try to get you doc to slip it in with the regular blood work.
2.) I have not gone to PA, but I have communicated with Dr. Peoples and the trial nurse via email. I started asking to many detailed questions so Dr. Peoples started responding to me directly.
3.)I am receiving Herceptin off label. I am pharmaceutical sales rep. My company owns Genentech, the people who make Herceptin. Because we are in the business of selling drugs, we have an open formulary for our drug benefits. This means that my onc can prescribe anything that is FDA approved.
4.) I will finish radiation the week of May 16. After that my onc will decide how long I should stay on Herceptin. I would like to enter the trial shortly after. I had neoadjuvant chemo with Herceptin and Taxotere. Using both of those together, I still did not have that great of a path report. I'm not confident in herceptin by itself in keeping the mets away. Who knows how long it will take for them to approve the vaccine and Herceptin together.
Don't apologize for asking questions. I learned of the trial from this website. We all have to learn from each other!!!! If you have more questons, feel free to ask.
Kim
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04-23-2005, 09:08 AM
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#5
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Guest
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Hi Kim,
Unfortunately I just had my oncology checkup two weeks ago so I'm not due for bloodwork again until August. I called Maureen (vaccine nurse) and she gave me the name of two labs in my area I could have it done at. I haven't called them yet but Maureen said it runs between $150-250. Of course I could drive the 6 hrs to Windber and they'd do it for free but it would probably cost me the same.
Being a drug sales rep. I'm sure you had detailed questions. We've had drug reps. from Astra Zenica come speak at our support group meetings a few times and I love to pick their brains. If you learned anything of importance, please pass the info on to me. Do you know how many women have joined and what they are hoping for?
Have you filled out any paperwork regarding the trial? Maureen is putting it in the mail to me. Do you think it's a good idea to meet again with my oncologist to discuss the trial once I get the papers? When I was there last I brought up the idea of a vaccine trial and he was very encouraging.
Thanks again Kim for sharing what you know with me. It's much appreciated!
Susan
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04-23-2005, 11:33 AM
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#6
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Guest
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Hi Susan,
This trial is at Phase IB. In the early phases of trials, they test to see how much drug they need to administer how safe it is. Maureen told me that they are looking to have around 160 Women participate. This includes women who are not HLA positive. I want to say there are about 60 women currently enrolled but Maureen can give you that info.
I received the qualifications information from Maureen but not the consent forms. I will send her a copy of all my results this week so I can get the ball rolling.
I think it is a good idea to at least send your onc the trial info. It might not help you, but it may help some of his other patients. The more women they get and the faster they get women to complete the study, the better it will be for us all!!!
Kim
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04-25-2005, 10:50 AM
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#7
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Guest
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Hi Kim,
I received the information packet from Maureen. I have also sent all the research I've done and copies of the packet to my sister, who is a top notch nurse. She is developing a detailed list of questions for Maureen/Dr. Peoples. Two areas of interest to her are the "vehicle", if you will, of delivery of the vaccine to the cells and also the method used to measure responsiveness.
I am seeing my MD tomorrow and will ask him to test me for the HLA-A2&3. No sense in investing more time into research if I'm negative.
Hope your radiation is going well.
Susan
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05-12-2005, 08:05 PM
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#8
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Guest
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Kim,
I was reading your post about a vaccine offered in PA. You said you heard abput it from this website. Where is that link so I can read more info on it? I am Her2+++ and did not receive Herceptin due to being randomized to the control group. Not sure if I am eligible for a vaccine, but want to make sure I do everything within reason to prevent a recurrence. Thanks, Kelli
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05-18-2005, 05:46 AM
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#9
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Guest
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According to Maureen only about 30% of women have the HLA 2 or 3. I did not and could not be included in the trial.
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05-18-2005, 07:03 AM
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#10
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Guest
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Kelli,
This and other trials can be found on our Clinical Trials page.
Clinical Trials Page
Warmest Regards
Joe
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05-18-2005, 08:38 AM
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#11
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Guest
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Kim,
There are a number of persons reading this website eager to learn of anything new in trials for those her2neu+ and er+/pr+ or er+/pr-. Reviewing the literature, these make up anywhere from 10% of her2neu tumors (what is usually quoted) to 44% or so of her2neu tumors. Chemotherapy is not so effective in them and may serve mostly to put them into menopause, if they are not already there. Being her2positive, tamoxifen tends to be ineffective in them and even early studies on ais shows them to perhaps need concommitant herceptin treatment for ai efficacy to be enhanced (this appears to be less effective in er+/pr+than er+/pr- patients per the her2 therapy article by Edith Perez recently posted on this site.
Since your company owns Genentech, perhaps someone you know could find out what clinical trials are in the pipeline besides the E75 HER2 VACCINE (we hope) combining herceptiin with agents other than anthracyclines (adriamycin, epirubicin, etc) , taxols, and cisplatin IN THE ADJUVANT SETTING.
As there are elderly, frail and cardiac-compromised patinets in whom the above treatments are contraindicated, such a trial is sorely needed!
Let's hope you can "pick their brains" and come back with some hopeful news!
Best of luck with your treatment,
Lani
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05-18-2005, 06:34 PM
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#12
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Guest
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Lani,
I accept your challenge!!! I work for Roche and they are more likely to have drugs that are not specific to Her2pos. That is Dr. Pegram and Slamon of Genentech's baby. But I will snoop around and find out!!!
The best research I see for the type of patient you described is in the area of Pi3k inhibitors. These are drugs they are researching that will keep Herceptin from failing. MD Anderson is doing a lot of research in that area.
Kim
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05-18-2005, 08:21 PM
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#13
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Guest
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Thanks for "picking up the gauntlet" on this one!
I spoke with a Genentech sales rep last Friday, who is working on finding the right person at Genentech to contact, as well!
Let's not let this group become an "orphan" group, as it is referred to in the drug industry.
Happy hunting!
Lani
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10-08-2005, 11:33 AM
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#14
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Guest
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responding to vaccine trials on east coast
Hi, I just found this site---I have stage IV mets to bone, trying to get into trial at Johns Hopkins in Baltimore--is a vaccine trial, and you have to be "stable" going in and can stay on hormonal and biphosponate therapy
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11-06-2005, 12:02 AM
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#15
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Guest
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Mom
Hi to the person who posted that they had mets to the bones, so does my mom, could you tell me more about trial at John Hopkins?
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