Sorry to bring it up again but.....Peptide Vaccine in Seattle

[kiwigirl]

Hi All

The first thing i wanted to say was a BIG BIG thank you. You have all got me through so much in past six months. I've been quite on this web sight but have done lots and lots of reading and WOW I've learn't alot.

Anyway down to the topic. I live in New Zealand and have been working on getting myself on the Tumor Groups Peptide Vaccine. After many email to Nicole I'm now getting pretty close to being accepted.

This is going to be a 14 hour flight for me to get there and I wanted to find out other peoples tips on accomodation, getting there from Vancouver as that is where i'll fly into from NZ. Or any other information on the trial ie: what to expect, how your body coped.

I really really hope i get accepted as this seems to be the way treatment is heading. I don't expect a cure from it but it sure does give HOPE.

Thank you all once again. Be happy Be healthy and Be safe. I Love Life.

Jacqui

[Indian_Yogi]

Jacqui,

I am looking at this too. Not confident though that it would work....so enrolling for TDM1. Please let me know how good is the vaccine.
Regards
Subhi

[kiwigirl]

Hi Subhi

I'm not sure how good this vaccine is either. I was hoping some one who has been on this already could tell me what its like. I just feel I have to do something else for my treatment and this fits.

I've spoken to my onc and others in this field and they have been very supportive.

The TDM1 trial is a good one, but this not available to me at the moment. Go with what suits your needs as i think they both offer some success.

Good Luck

Regards
Jacqui

[Indian_Yogi]

jacqi,

Did you try homeopathic medicine. I feel its working for me.

Regards

[Margerie]

Jacqui~

No Vancouver advice here, I flew from CA to Seattle and back in one day. I did use the Seattle Shuttle express (http://www.shuttleexpress.com/)to get to and from the hospital and the airport each visit and that worked out great.

The first three appointments are long, lots of tests and then you are vaccinated. I was fatigued that day (from the vaccine and all the travel) and had a mild reaction (itchy, a little tender) at the vaccination site. 24 hours later, I had completely recovered. The follow up visits were more tests, but no vaccine, so I was not overly tired.
I am assuming you are staying overnight in Seattle... they had some partner hotels with medical rates and free shuttles back in '07 and I hope they still do.

Best of luck on your vaccine adventure~

Margerie

[Indian_Yogi]

Margerie,

Did the vaccine help you with the tumors and cancer. Is it worth the effort?

Regards

[kiwigirl]

Hi Margerie

Thank you so much for the reply. Its nice to know more about the trial. I do have the option of flying into San Fran or Lax.

One of the reasons I'm able to do this is my husband is a pilot so that helps with travel. I'm going to look on the net at the shuttle express.

I've been trying to work out if I can go to Seattle for just the day, sound like I can. Thank You.

regards
Jacqui

['lizbeth]

Jacqui,

In the peptide vaccine trial SandraGA & I are in you had to return 48 to 72 hours after the injection to have the injection site photographed.

Check and see if you can be there just for 1 day.

Hope everything works out so you can participate!

[kiwigirl]

Thanks for that Lizbeth I'll check with Nicole once they give me a definite yes.

Did you have the injection sight photographed every time or just the first time?

I would like it work out to. In New Zealand there is an average of 300 women who end up with Her2 +++ every year, we are just a small country. I hope this could help them and become part of their treatment plan to.

regards
Jacqui

['lizbeth]

Jacqui,

I was trying to figure out which trial you were considering. I'd like to read more about it.

I had photos and blood taken each visit.

What a small world. I joined a cancer support group at a local church. Suzie who leads the group just came back from NZ after picking up her daughter who went to college there. Suzie is also Her2+.

[Catherine]

Re: Travel Vancouver, BC to Seattle, Washington. There are quite a few flights a day. 30 minute flight, but it can be expensive. Otherwise, a bus, not all that nice, but cheap. (Travel by bus approx 4 hours) Compare flight choices and prices on expedia or travelocity perhaps.

San Francisco to Seattle, Quite a few flights a day. 1 hour and 20 minutes.

I live in the northwest, and the above should be pretty accurate. Hopefully, it helps you plan your trip.

All the best,
Catherine

[CourtneyL]

Hi Jacqui - I am currently enrolled in the peptide-based HER2 vaccine trial at the University of Washington. So far I have been to Seattle 4 times - the first three trips were for the vaccine injections themselves. Other than a little tenderness at the injection site, and a brief case of shingles that may or may not have been related to the vaccine, I haven't had any complications. My fourth trip, a few weeks ago, was for the leukapheresis where they extracted my white blood cells through what was essentially a large centrifuge machine. That procedure was a little more involved since I had to have a catheter placed in my neck because my veins weren't big enough. Not everyone needs the catheter though. I was a little tired and groggy from the meds but otherwise felt fine the next day.

I will be returning in July for 3 more visits, 1 week apart, to receive my super-charged t-cells. I will also be receiving a baseline scan. From there it will be 3 more visits, spread out over several months, to receive the booster vaccine shots.

Its too early for me to know how my disease is responding to the treatment but as soon as I know, I will update you. Feel free to pm me with any specific questions.

The American Cancer Society offers free hotel rooms for patients traveling for treatment. Nicole can provide you with the paperwork necessary to get your free room!

I fly from San Francisco and usually catch a direct flight on Virgin American - its a nice airline and reasonably priced.

Good luck with your decision and let me know if I can answer any additional questions!

Re: how well does it work - they know that it works to trigger an immune response in nearly all the patients who have been on the trial. They don't know how long the immune response lasts and, from what I can tell, they don't necessarily know how robust the response is or can be. I had a pretty low burden of disease going in to the trial so I am hoping the immune response will be powerful enough to kill all the remaining cancer cells I have left and that it will last long enough to keep me NED forever!

[kiwigirl]

Thank you for all the information on flights and accommodation and bit on what to expect. Everything does really help with the planing process as it is a little bit of guess work from NZ.

I'm sorry i should have post the trial that i applied for. If you look at clinicaltrials.gov the trial number is NCT00343109 or you can go to the Tumor Vaccine Group - University of Washington.

This trial is for people who are currently on Herceptin and still have at least six months to go still on Herceptin. You have to be stage 3b,3c or IV with either NED or stable disease.

I thought I should post this as people tend to miss the window of opportunity to get on this trial as its something maybe for newcomers to think about.

Thank you so much for your help Courtney. I think you are probably on a different trial to me as what I'm looking at only has 6 visit to Seattle. If this a go then I would think July is the time I'll be going to Seattle. In which case I'll send you an email to see if your there at the same time.

It would be nice to meet other Her2 friends. I hope this gives you NED as well from what I've read it does look very promising.

All the best.

Kind regards
Jacqui

['lizbeth]

Thank you for the information Jacqui. This looks quite different from the vaccine trial I am enrolled in.

[kiwigirl]

Hi Lizbeth what trial did you do? I know there are a few vaccine trials out there but I don't really understand the difference in them. The only thing I do know is they all mention peptide vaccine???
Lets hope they work.

Regards
Jacqui

[Chelee]

Jacqui, Wishing you all the best with the vaccine and your trips out here. I've been looking really hard at the vaccines myself. Since stage IV...I'm now willing to try almost anything...sounds like I fit this trial. I am going to print this trial out and run it by Dr. Slamon at my next appt.

It sure sounds like you have done your research and are doing a great job planning ahead for when you get there. Way to go! This does offer you hope, but here's to it keeping you NED forever. Thanks so much for posting the trial info...I appreciate it.

Chelee

['lizbeth]

NCT00524277 is my trial number.
They are also looking to recruit participants who have lower amounts of Her2 as well.