U of WA Protocol 109

[marymary]

Hi:

I am brand new to this site. I am looking into University of Washington's Protocol 109. I went through this once before and was crestfallen to discover my HLA A2 status was negative. It's like trying to adopt a baby and then at the eleventh hour discovering that it fell through on a technicality. Anyway, I was wondering if anyone out there knows whether volunteers are still being sought or if the trial is allready full.

Also, I am wondering how you made up your mind to participate (or not) with hard data being scarce to nonexistent? Personally, my thought was that it is better to fight than not, on principle. Even if it does nothing for my immune system it might help me psychologically. That sounds like a weak argument, however, when I see it on paper. Perhaps a massage or a puppy or even a stiff drink might help me psychologically, at a fraction of the cost.

I would appreciate any feedback from others who have been there.

Thanks!

mary

[patti]

Hi Mary, I just got on this vaccine trial 2 wks ago and I think I am number 19 or 20. I was told that if I couldn't make this study there were others I might qualify for. You should call up there and talk to Patricia Fintak. She is the one who organizes everything. I got the impression that this vaccine is very promising. There maybe something you can qualify for. Good Luck.

[DonnaNY]

May I ask what drug this trial is for. What criteria one may need to fill? I am asking for my mom. Thanks !

[marymary]

Protocol 109 is not a drug trial. To quote from the literature it is "A Phase I Study of a DNA Plasmid Based Vaccine Encoding the HER-2/neu Intracellular Domain in Subjects with HER-2neu (HER2) Overexpressing tumors."

Study Population: Breast cancer: Stage III or Stage IV breast cancer in remission and defined as NED (no evidence of disease).

You can contact Patricia Fintak at University of Washington for more information.

Mary

[DonnaNY]

Thank You so much for the info ! God Bless !

[marymary]

Yesterday I spoke to Patty Fintak. She stated that 20 volunteers have been enrolled out of a needed 66. So space is available as of 4/25/06.

Question: (If any of you 20 read this post) how did you make up your mind to participate? Is there any hard data on HER-2 vaccines available out there? Or were you following your intuition? Not that that's a bad thing to do, that's about where I'm at right now.

Thanks.

Mary

[patti]

Hi Mary, I found the trial through my sister. I liked the idea of an immune response for this type of cancer. I have always believed that the human body has the capacity to heal itself but sometimes it might need a kick start. The only thing I worry about is if this vaccine could cause an auto-immune disease. I had my first vaccine a couple of weeks ago and so far I have not had any adverse reactions. Anyway I am glad this trial has happened for me and I feel very positive about it.

[Cathya]

Patti;

When I spoke to my onc about a vaccine he said that so far there was no proof that it was effective or useful in fighting our cancer. Have you had any discussions about this with Patty or the doctors there? I also like the idea but it is quite a distance for me to go and would be quite expensive overall I would think.

Thanks,

Cathy

[patti]

hi cathy, when I met with the dr up in seattle she sounded so promising. she did state that alot of what is being published now they were actually working on 10 years ago. so that could be why your onc is not aware of a vaccine possibly working. I do feel like my best bet for fighting this cancer is to get my body to do the work, and that maybe a vaccine is the kickstart it needs.

[marymary]

Well, not in the way you'd suppose.

Certainly I am hoping that the vaccine will help my body learn to right the wrong that is cancer. Just about as important, I've decided, is the fight itself. Having the diagnosis that I had at age 42, with a certain and speedy death predicted, can really affect ones thinking in very powerful ways. I have no idea whether having a "positive outlook" (how many times have you gritted your teeth and smiled when hearing that saccharine phrase?) will affect my actual outcome in any way, shape or form. Hope, however, I must have to get out of bed in the morning, take my medicine and face my friends. Otherwise I may just sit here waiting for the sand to run out.

I am human and as such deeply flawed but I am a fighter. At the end of the day I've decided that if the doctors at the University of Washington are willing to give this a chance then so am I. And who knows, it just might work!

mary

[kat in the delta]

Where is the site for this vaccine? Who does it help--1st timers at stage III, lymph.nodes+, but not seen in other places yet?? Any input would help me. Thanks, Kat

[marymary]

Just found out I don't qualify for the trial (Protocol 109), since I have a brain lesion. The lesion has been treated with gamma knife and continues to shrink, but it can still be seen on MRI.

The only disease you can have is stable bone disease.

Oh well, I didn't want to have to go to Seattle every month, anyway. It's hard because I've invested so much energy into this and did get my hopes up, even though I tried not to.

Mary

[kat in the delta]

Mary,
My cousin has badder c. that has spread to the bones in his leg, hip, vertebrae. Would HE qualify ??? kat in the delta

[marymary]

I believe it's only for ovarian or breast cancer patients.

Mary