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eric
12-16-2004, 05:59 PM
Hi all,

I've been surprised by the reaction my wife and I got from her onc and one that I speak to fairly often from Sloan. Both communicated that vaccines are extremely experimental and there's yet to have been any real success with stage 4. I was more surprised when the doc from Sloan told me this since they have had vaccine trials and through what I've read about the University of Washington and Windber, I was excited and optomistic.

I'd love to hear your thoughts.

Thanks, Eric

Sandy H.
12-16-2004, 06:14 PM
I am IBC with skin mets. Lupe G. Salazar M.D. from University of Washington was at SABCS and told me about a vaccine trial that has been out for 10 years. One needs to be on maintenance Herceptin and NED to get it. Her number is 206-616-8503. E-mail is Isalazar@u.washington.edu She said they have seen some good results from it with IBC. It is in Phase 11. I am looking into it for myself. I don't know if this is anything you want to look into. My oncologist told me that one can not have a vaccine unless they are NED. I hope this helps. Smiles, Sandy

*_anne_*
12-16-2004, 06:17 PM
Eric,
Funny you wrote that. My mother's onc. also had the same response when asked about the vaccine. He is supposed to be world famous reasearcher and I was very surprised to hear that from him. I think they want to be conservative until there is some sort of FDA approval. It is too bad. I would love to hear another onc. positive opinion about it.

al from canada
12-16-2004, 07:17 PM
Hi all,
I would love to hear from others as well. The Herceptine + vaccine trial stipulates NED or Stable disease and HLA-A2. Any successes??
Al

Rozebud
12-16-2004, 09:40 PM
For those of us that are not stage IV at this point, it would really help for them to give us some preliminary results. Otherwise....why would we want to do it??

Cindi
12-17-2004, 07:12 AM
Just a side note, Rosebud your family Xmas photo is beautiful. If I can ever figure out how to add mine to this website I will do so too. Merry Christmas!

Cindi.

Rozebud
12-17-2004, 12:17 PM
Thank you Cindi. I'm quite frankly surprised we can upload such a big image, but I was SO excited to have a picture where both of my kids were smiling at the same time I had to post it! Do you have a picture saved to your hard drive? If so, go to "my controls" (above), then to "edit avatar" and then go to the section where it says to browse to upload from your hard drive and choose browse and find the image. Does that make sense? If you have a picture that is too big, you can send it to me and I can resize it for you.

I wish I could figure out how to make the signature fuction work!

Brian
12-17-2004, 01:31 PM
I am sure that the Onc's at Sloan are correct, ie that no vaccine to date has been clearly proven to be effective. However, I think it is very clear that vaccines hold significant hope for the future. You might want to ask the roughly 50% of the woman that participated in the U of Washington study in 1996 that are alive today and NED. (All Stage IV)

This is a new area of study and is aided greatly by the knowledge that AIDS research has given to us about the human immune system. Those of us that are experimenting with these at this point have no true assurance that they will work, however that does not mean they will not. At this point however none of us have any assurance that the approved treatments will be successful in any individual case.

My wife had her first recurrance 11 years after she was first diagnosed. We took all of the approved therapies along with tamoxifin. Our Drs. prounounced us cured, and 4 months later we discovered that the cancer had come back. All I know is that you never want to look back and say to yourself "If I had just taken that______treatment, maybe I would not be battling cancer now."

I view taking this experimental treatment as just what it is, i.e. an additional treatment that might give my wife a real chance to cure Stage IV breast cancer. If it doesn't work we'll try something else.

al from canada
12-17-2004, 01:37 PM
Dear Brian,
I am having difficulty find results from the initial trial phases of the U. of W. vaccine studies. You quoted 50%, can you direst me to the link(s) quoting these stats?
Thanks and I hope your wife is well for the holidays.
Al

kk1
12-17-2004, 03:33 PM
Hi Brian;

I would also like to find the reference that goes with the long term survival stats you quoted. I did alot of digging in the literature and spoke to several Onc's and immunologists in regard to the UW and other vaccines trials. While many of the cancer vaccines have shown great promise in regard to illiciting a short term immune response few to date have demonstrated any lytic ability eg. actually kill cancer cells even in a test tube never mind the human body. In addition less than 1/2 of the patients appear to retain the antibodies longer than 9-12 months. One of the reasons UW and Walter Reed opened the phase 1 trial to patient on herceptin was the hope that they would see some type of stronger lytic response in the presence of degraded her2neu protein (due to herceptin's action) with the thought that more epitopes are likely to be exposed. The concept makes alot of intuitive sense to me. I have attached a 2002 review article by the UW PI's. To date the UW group has been working on 4 different her2/neu vaccines in the hopes of getting a better lytic response.

I guess what I am trying to say is your wife's participation in the phase 1 trial of the UW peptide? vaccine with herceptin really is pioneering. That phase 1 trial is I believe still working on enrolling the 20 patients as of last week so even preliminary findings are likely 6 months or more away. As I understand things the first phase 2 trial of one of their 4 candidate vaccines which will begin to look for evidence of efficacy for the first time was not scheduled to even begin enrollment until late spring of 2005 at the earliest.

[attachmentid=4].

KK

*_StephN_*
12-19-2004, 01:46 PM
To address the questions about anyone's med onc in favor of the vaccine trials. I am in the Seattle area and my med onc has been in favor of my participation in any of the vaccine trials that interested me. Unfortunately I have not been able to qualify so far for various reasons.
I am a patient who has done nothing be clinical trials since diagnosis and am hanging in remission now for 2.5 years after dx with stage IV.
Currently I am in a blood tracking trial, so any way I can help information go forward I am all for. My med onc would not offer me anything he thought might harm me or interfere with possible future treatment.
All these things take up some time, but worth it to me if my long-term outlook can be improved in any way.
As I learned at San Antonio the week before last, it takes a long time and perhaps many false starts for research to find a path that leads to any kind of new drug or change in treatment options.
If no one steps forward to participate, then it takes that much longer for the necessary information to accumulate toward some real answers that will warrent the institutions and FDA allowing certain directions to continue.

al from canada
12-20-2004, 09:50 PM
Hi Steph,
Starting this spring U. of W. will be offering a phase 2 trial, Vaccine + Herceptin WITHOUT the HLA-A2 inclusion requirement. Call Patty @ 206-543-6620.
Take care and happy holidays,
Al