My first UW vaccine trial

[Julie2]

I got my first UW DNA vaccine trial. I am excited that I got qualified and able to recieve the vaccine trial. I will be happy to share my experience related to this trial.

Julie

[Marily]

Hi Julie, I have a friend who with two other girls went to be in this trial,... two did not qualify because of active mets.. she did but after further testing did not meet all the criteria..? had only one of the genes??they were looking for.. I am very interested in this test and the info available on it... How are you doing? I live in the middle of the US and they are only doing this testing on either the East or West coast so... Please continue with this thread I really am interested in finding out how it is going... thank you Marily

[Cat_Her2]

Hi,
I also have a support group friend who is on this trial. She said the only bad thing was there was a male doctor (or medical student?) who saw her the second time who was very arrogant and condesending to her. Did that happen to you? I would like to look into this trial but I am so SICK AND TIRED of condesending male doctors. But she said the first time there was a really nice woman doctor who saw her.

Is there any control of what doctor sees you when you are on this trial?

Thanks, Cat

[Julie2]

Hi Cat,

If you are interested to join the trial please don't bother about a single doctor.You can always mention this to the coordinator and ask her to set you up with another doctor. There are other doctors who are pretty good and considerate.

Julie

[Marcel]

Hi Julie and all-

I'm in the UW trial, too. I've already had two vaccinations. So far so good. No problems. I commute from Chicago. Diagnosed Oct. 2003, stage IIIa with 2+ positive nodes. Completed chemo May 2004 (dose dense, AC/Taxol-- ), and radiation Aug. 2004. Started Herceptin as a single agent Nov. 2005 every 3 weeks. So far so good with that, as well. Had chills first infusion, but no problems since then.

I have found everyone to be extremely nice at UW, including the one male doctor who is on the team. Can't imagine him being anything but. Maybe it was someone else. Maybe just a miscommunication. But I certainly wouldn't be put off by that. I'm also happy to share any info with any of you.

Best all around-
Marcel

[Unregistered]

(Ok Joe, since we can't post anonymously after April 1st, I am posting this now!)

Hi everyone,

I am also on the UW DNA vaccine trial. I know the trial people read this board sometimes, so I don't want to share my name. I've already gotten my vaccines and my biopsy, and I wanted to second what Cat said. I had my first vaccines without the male doctor (Doctor C); then on another visit I had him. It was definitely not as good an experience. He just doesn't know as much, and he covers it up with being arrogant. He knows almost NOTHING about breast cancer, I can tell you that! We probably know more than he does combined. I found out from the nurses that he really hasn't had any cancer training yet. He is only a resident that just finished his general practice training and he doesn't have any cancer training (which is obvious if you talk to him at any length about breast cancer!)

Anyway, I wouldn't see him as a reason not to go on the trial Cat, but I would ask for another doctor. Or if you have to have him, just make sure you don't ask him much about cancer or the trial itself (or if you do, ask another doctor too.) I asked him some questions and then later asked Dr. Salasar the same questions and it was obvious that he was just making up stuff he didn't know. The answers were so totally different it was amazing. I have medical background myself so I kind of knew he was full of himself and making up stuff as he went along.

Anyway, this is all just one person's opinion, but I had to chime in because I was very disappointed when he started being involved in my visits. It totally changed the visit for me. But maybe if you have him from the start it won't be so bad!

Lots of love and luck and health to everyone!

[patti]

hi, I just got accepted to the UW trial and I wanted to know if there were any side effects from the vaccine. I am hoping to start in the next couple of weeks.

[Julie2]

Hi Patti,

Congrats! I just had some musle pain and bone pain for the first two days. Other than that I didn't have any side effects.

_Julie

[Marcel]

Hi Patti-

No significant side effects, for me, at least. Almost negligible ache on vaccine site. Good luck!

Marcel

[jojo]

Simple question above....

[SaraD]

has anyone heard concerns about a cancer vaccine making the immune system resistant or tolerant to the cancer? ive spoken to my science friends and my oncologist who say this is a big concern with peptide vaccines. i also saw a phase I trial specialist at u. colorado who recommended against the HER2 vaccines given at u. washington (seattle) for that reason. she said it could make the immune system tolerant, and that t cells from vaccinated patients have been shown to not be able to kill her2 positive tumors anymore. thoughts?
http://her2support.com/vbulletin/images/statusicon/user_offline.gif

[Marcel]

Dear SaraD:

As I have just returned from a follow-up visit to UW to find your post, I asked the lead physician, Dr. Nora Disis, to comment on it, and received the following reply:

<<I have not seen any data like this. The majority of our subjects have
developed immunity to HER2 after vaccination and we have published that
those peptide specific T cells can kill HER2 + tumors. Publications that
people may be interested in that describe these findings are:

Knutson, K.L., Schiffman, K., and Disis, M.L.: Immunization with a HER-2/neu
helper peptide vaccine generates HER-2/neu CD8 T cell immunity in cancer
patients. J. Clin. Investigation. 107:477-484, 2001

Disis, M.L., Gooley, T.A., Rinn, K., Davis, D., Peipkorn, M., Cheever, M.A.,
Knutson, K.L., and Schiffman, K.: Generation of T cell immunity to the
HER-2/neu protein after active immunization with a HER-2/neu peptide based
vaccine. J. Clin Oncol, 20(11): 2624-2632, 2002

Knutson, K.L. and Disis, M.L.: Diversity of the T cell population responding
to a dominant HLA-A2 epitope of HER-2/neu in an ovarian cancer patient.
Human Immunology, 63 (7): 547-557, 2002.

This last publication describes the diversity of the killer T cell response
generated. These are just a few of many papers we have published on the
immune response to HER2 after vaccine (see our website
www.tumorvaccinegroup.org). In fact, Dr. Salazar is preparing a paper now
demonstrating that immunity persists for years after vaccination. We have
several patients from these initial studies who still have vigorous
responses to HER2, now over 7 years after vaccination!

Since our group has immunized dozens of patients with HER2 peptides I think
if there were such a phenomenon we would have seen it. Also- I am pretty
current with the results of most studies in the field and have not heard of
this as a major problem with other vaccines targeting other proteins. It
would be great to know where to find the information you talked about.>>

[jojo]

When is your first vaccine? So excited for you! Please do keep us posted on your developments.

PS: is that the same vaccine that Michele U had just taken?

[Julie2]

Hi Jojo,

Thanks you, Yes, it is the same vaccine that MicheleU had taken. I already finished 3 vaccines and going for followup visits.

Julie

[rinaina]

What is the vaccine suppose to do? First time hearing of it. Good luckrina

[jojo]

Julie,

Any side effects from the vaccine? Hope you are not having too much trouble with it!

[rinaina]

What is the goal of the vaccine? What breast cancer patients can qualify for it and is it only being tried at UW? How long has this study or trial been going on and what are the results to date? I don't know anything about it obviously!

Thanks for helping me out

[Julie2]

This is for stage 3 or stage 4 Her2+++ breast or ovarian cancer patients in remission. This is a DNA vaccine which is offered only at UW seattle. You can see more details at their website http://depts.washington.edu/tumorvac/trials.php

Julie