I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hi, I posted a thread about this, quite a few times, I am on the vaccine in Seattle Washington - I travel from Tampa Florida - Dr. Salazar is my dr. My trip is once a month - 4 airplanes and about 18 hrs of flying roundtrip from tampa, seattle, seattle to tampa in less that 5 days.
I cannot express the money that has been spent - it's adding up - but, I believe in the cause. If anyone is on this vaccine please email or private message - I like to talk about how you feel and vs versa, reactions, followup care etc. This is experimental, I feel like I'm doing this for me and for future bc survivors.

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

I see this is an older post, but I finished the trials there , last July '09. I also saw Dr. Salazar. I am from Atlanta , and did all the visits that you did. I sure do think \ hope it is worthwhile . I am doing fine as of now , let me know how you are doing ! Lynn

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Lynn and kiwigirl,

I found one of the postings of Margirmc (below) back in late Novemeber 2009. My guess is that she's been enjoying NED and went on with her life. If you click on her name on the Board, you will find all the postings she'd made. There's also her e-mail address if you want to get hold of her. [In case she no longer logs on to this Board]
There are also several 'newly diagnosed' who have reached NED after participating in the Washington vaccine trial. Roll up the Newly Diagnosed postings and you will find them.]

***

Hi, I went back to work, felt good to be in a normal world.
Last Monday was the last vaccine in Washington, got
very emotional about health screening, not just for me but
for my daughter and other young family members.

I just felt - what will they say next, no treatment to later stages?
Got, scared. We all have our own personal faith and political
opinion. And, yes - we do need to keep this post focus on what we all have and are going through her2 breast cancer disease.

It did get political - with government panel guidelines, all over the news, and some like myself had an urge to say something, letting others aware - about possible insurance problems, but there are other places to take action/advocacy groups etc.

There are many organizations that have online petitions, Komen is one of them - that will combat this head on - and that is a good place to vent/or take action that will hopefully show a voice in how a breast cancer survivor feels in front of the political arena.

As for me,
I am doing well, working, cooking, exercising and decorating for the holidays.
Wish all good healthy holidays!

Forgive me, I was scared, tired and emotional.
Margie

dcis
liver met 10 wk treatment TCH
NED
Vaccine

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Thank you for that . Have not heard back from her as of yet. I appreciate your thoughts tho, and may try to contact her again . Thanks so much , Lynn

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hello!

I hope that you're having a wonderful day. I am interested in participating in the Washington trial and would also love to hear from anyone who is on the trial regarding side-effects and hopefully, successes of the vaccine.

Thank you for being brave enough to participate in the trials and for taking us all one step closer to the cure!

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hi Didi,
I have just finished Herceptin and am waiting to discuss the results of a PET/CT scan. Assuming I am OK, I was interested in the vaccine trials. I think that being pro-active is a good idea for me and recent press from the Cleveland Clinic looks promising.

Are the trials in Seattle part of the same study?
Any information that clarifies this would be most appreciated.

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hello Myra Lynn and group!

The vaccine trial in Washington requires the participant (patient) to be receiving Herceptin during the 6 months of their participation in the trial, so it looks like you won't be eligible for that one.

Unfortunately, I don't know anything about the Cleveland Clinic trials, but I would love to hear more about what's being done there. I will look around and see what I can find out.

What you might find useful is contacting the American Cancer Society where there will be a person available on the phone to direct you to the website that lists all current trials related to breast cancer. It will take a bit of searching, but the Cancer Society will help you. Also, there should be some help for you at your cancer clinic from a Social Worker who can direct you to the appropriate resources in your community to help you with the search.

I will let you know what I find out about the Cleveland Clinic.

Have a lovely day and congratulations on nearing the end of Herceptin! Good luck with your scan, I'll be thinking of you!

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hi,
I am interested as well Can someone send me the link on where to go..(Jackieo7 are you there..) I keep googling seatle washington her2 breast trial and its giving me feedback from 1998? Help want to make sure im viewing the right one/ Do they list specifically the pros and cons. Does any one have information on angel flights and hope lodge to save on costs of travel and is the treatment free because its clinical?
Definatly would be nice to be able to link up and travel w/someone else on site not to be alone if possible.
Hugs,
Joletta

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Joletta -

Go to this link:

http://depts.washington.edu/tumorvac/trials.php

This is for the HER2 vaccine trial here in Seattle. It gives the name and phone number of the trial coordinator. You will see that there is more than one trial at this time. By calling, they can tell you which one would be best for you.

There is also a vaccine trial for HER2 beast cancer back east. Some of the gals here have done that one.

Now you have some "homework."

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Joletta,

Chelee posted this one yesterday (?) for another member:

"I think it's very normal for you to be looking for clinical trials. It's good that you want to stay informed and vigilant. I do agree with Debbie that this would be a great time for a 2nd and even 3rd opinion. (Go outside your network/group.) There are lots of trials...which ones you might fit into I don't know? But there are several good clinical trial sites. One I use you can put all your information in & it will give you results that match your dx. It's called "Breast Cancer Trials.org". Here's the link and see if it turns anything up for you in your area.

https://www.breastcancertrials.org/bct_nation/home.seam?cid=5057

That's interesting that your onc would tell you matter of fact that there are no trials for you. I really highly suggest seeking 2nd opinions...this is a perfect time for that. Also what is your onc's doing to moniter you now that your done with trt? How often does he want to see you now? I'm so happy to see you are doing all the right things! It's good you are researching, learning all you can now. But do remember some really don't recur. We have quite a few on this board alone that haven't & are doing well. :) Keep us updated."

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Thank You Jackie and Steph for the helpful links.
Seattle washington is only offering stage 3b an 4 currently. Washington DC which is closer is offering a few diffrent kinds. You will be randomized 1 0f 3 diffrent ones they are offering. I believe it was a phase 1 trial. these pep tide vaccines seem to be dating back to atleast 10 years ago has any of them made it for a standorized treatment? After getting all the basic treatment does it really seem worth the risk to go through a trial....Is it possible these vaccines could actully bring on more her2 thus making it recur. I will not see my oncologist again untill oct 19..I plan on asking him these questions then. Mabe someone can respond that has been on this trial with good sucess and what vaccine did they get and are they getting close to approving it? does anyone know what the sucess rate is and how much % would it lower the recur rate..i guess that would also depend on what peptide they are on also or mabe since it is still in clinicals these # are not known yet?
seekin info
Thanks
Joletta

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Thanks Didi & everyone else,

First the good news: It looks like there is NED based on the results of the PET/CT scan. I will take a blood test in 2 months to make sure my numbers hold.

I will pursue the leads that all of you provided and see what I can learn about the clinical trials. I'll let you know what I find.

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hi Joletta and group,

I have the Protocols for the Seattle Tumour Vaccine Group and it spells out what one needs to do if accepted to the trial. I also have the actual study from Phase 1 of the trial, which talks about side-effects, how the vaccine will hypothetically work, how many people were in the trial and the interesting results of phase 1. All but one participant mounted an immune response to the vaccine which contains peptides which make up Her2. One of the staff at the research centre told me that the concern is that the vaccine could cause auto-immune disease, but it is not known yet as not much time has passed since phase 1.

If you would like to me to send you the study, I will, but I think I can only send it via email as it is an attachment. I will try to post it separately.

Didi

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

I have the paperwork ready to fax for this trial, but I can't do the trial until I finish rads. I think I was communicating with Dorrine. It has been several weeks since she sent me the paperwork (after I sent her my path reports), and she has emailed me to follow up. Maybe that means they are interested in my case. I haven't decided if I want to do the trial or not.

Good luck!

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Yes, Doreen is great. I am actually going there this Thursday for their Open House. I hope I can learn something about how the trials are progressing !

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Didi - I would love to see what you have on the trial if you wouldn't mind emailing it to me.

deenaheinrich@yahoo.com

Thanks!

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Thanks for the info Didi! I'm just waiting to hear back from Doreen to see if I qualify.

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

I got in, and start the trial next week!! Let me know if any of you also get in. Maybe we'll be there at the same time.

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Congratulations Deena! Please let us know how you get on. Will you get another PET scan before starting the vaccine trial to establish a baseline? I know they do lots of blood work etc

Hugs
Ellie

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Thanks Ellie. I am excited! I have a PET/CT tomorrow in fact. Not related to the trial though. I had a CT scan in October that revealed some lung and liver nodules. This PET/CT is to monitor them and see if they are cancer or not. The CT report said that the liver nodules (2 at less than 2mm) were likely cysts. The lung nodules could be a number of things. My tumor markers are at 14, my bone scan and brain MRI were clear, so I am hoping the PET/CT will be clear too. They did say to drink alot of water since they will be taking alot of blood. I'm used to it. Thank goodness I have a port!

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Will be thinking of you tomorrow. Please let us know how it goes,praying that the nodules are b9.

Ellie

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hello! I am waiting to hear if I have been accepted into the Seattle Her2 Trial. Any news on how the participants are doing would be greatly appreciated. I live in Atlanta, so it will be a lot of long trips for me. (Not as long as NZ).

Please feel free to email me. annwertz@yahoo.com

Thanks!
Ann

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hi Ann -

Check in with "schoolteacher" here. She is from your neck of the woods, and also traveled here for the vaccines.

I live in the Seattle area, and would love to meet you at the medical center if you are accepted.

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hi Steph!

Thank you so much for replying. I'm new on this forum and desperate to hear how those who have participated in the Seattle Her2 study have fared. Obviously, it will be a huge investment of time, travel, and $$$. I have been advised against vaccine trials by 2 oncologists in Atlanta. I have been told that Emory Univ. (in my town) will be getting the TDM-1 + Herceptin trial w/in the next few months & encouraged to participate in that trial once it is here. Plus, I've been advised to do a Navelbine + Herceptin + 50/50 chance of Everolimus trial until the TDM-1 trial gets started. I'd prefer to go the vaccine route & forgo the toxic chemicals, if possible (as long as I hear success in these vaccine trials). I'll try to contact Schoolteacher. Thanks! And if I do come to Seattle, I'd very much enjoy meeting you!

Cheers!
Ann

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hi Anne. I did the trial and felt good the whole way through. At the time we all thought I was NED. I'm not sure what stage you are as you talk about the TDM-1 trial and others.

The only thing you need to be aware of is the vaccine does not cross the blood brian barrier. This is something I did not even consider for brain mets.

Good luck i still think it was a very worth while venture for me as I disease any were else.

Cheers
Jacqui

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hi Jacqui,

I am Stage IV. I had not even thought about the blood/brain barrier issue w/ the vaccine.That is certainly something to consider. Thank you for telling me about that. I conclude from reading your history that you did not have brain mets until after completing the trial. I'll bring this up with my oncologist.

BTW, I LOVE NZ! I visited a friend in Waihi on the East Coast and toured the S.I. about 7 years ago. Beautiful country!

Thanks for sharing your experiences.

Ann

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hi Ann yes the east coast is nice i live on the east coast surrounded by nice white sand beaches. I went to Waihi alot my Grandparents lived there. Its great fishing.

My mets was discovered after my vaccine was finished. During this time I did not have any scans. The mets came as a huge shock but i guess the vaccine is doing it thing. I'll have a MRI and PET in two months.

All the best with options

Regards Jacqui

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hi there. I just joined this site. I'm in this trial..started in December and came back yesterday from my 5th trip. I have one more vaccine to go. It is a committment but definitely do-able. I too am hoping it's worth it!! Getting scanned in 3 weeks so will know more..

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hi MakMak,
I was accepted into the Seattle Clinical Trial, but decided to go with a different clinical trial, one that uses the study drug T-DM1. I just had my first infusion yesterday. It was a very difficult choice. Best of luck to you!
Ann

Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine
 

Hi, I'm Laurie and am talking with U of Washington people regarding the possibility of a new clinical trial just starting in Seattle for HER-2+ patients that have been maximally treated and not achieved a complete remission. It combines "administering escalating doses of ex vivo expanded HER2 specific T cells after in vivo priming with a HER2 specific vaccine." Discussing with my onc in Orlando Wed am and gathering more info. Any input re responses to the vaccine and experience in Seattle would be appreciated. My e-mail address is tobiah@earthlink.net. Been