her2+ vaccine therapy trial

Hi.  I was in a similar phase one trial at U of Washington.  My friend ( who is earlier stage than I was) was in a trial much like this one at Wimber in Johnstown, PA. 

There are definitely vaccine trials out there and I believe well worth checking out.  What I did was call the phone number of the trial I was interested in and the researchers walked me through the process.  At first I thought that 7 trips to Seattle would be way too expensive but someone it worked out.  The ACS provided some free hotel rooms and I went back to work to pay for flights.  I'll probably never know if it "worked" but I'm glad I did it.

blessings,

Wendy

I called the POC for BAMC site, they are going to call me on Monday to see if I can get in as a civilian.  The POC did say that the trial is supposed to be opening to civilians in the future and she would get me that info as well on Monday.  You have to have had positive nodes and be out of treatment completely for a month but no more than six months.  I told her I would stop the herceptin for a month to qualify!

Blue ~ that is entirely possible, the POC just said "positive nodes" and to receive the treatment at BAMC you had to be a military member/dependant/active duty otherwise you would have to go to Dallas or Houston if in TX.

I was going to participate in this trial, but the closest hospital was in Washington D.C.  Logistically, it was a nightmare.  I recently decided to pass it up.  Good luck to any of you ladies who are considering joining the trial.

Does anyone have contact info for this study?

I haven't heard anything back yet but they did warn me that there was a little bit of a waiting list.  Said it might take about a month to get back to me  However, I will let ya'll know when I hear something.

Okay, I just got back from my intial appointment for this trail.  They gave me the paper on it that explains the risks and everything.  The onco said I was elligable for it and they have to set up an appointment with the research coordinator.  He basically said that what it is doing is injecting her2 cells into you so your immune system learns to fight them. They said there really shouldn't be any side effects.  There is a lot of info in the paper work, if anybody has any ?'s let me know and I will see if I can find the answer.  One thing I have a ? about is in the paper work is it says they will check your blood and you need to be... HLA 2+ or HLA 3+ if you are HLA2- or HLA3- you can not particpate.  I'm wondering what HLA is, anybody know?

Thought I would update this thread.  I will start this trial Jan 4th.  I had my blood drawn last wk and got the results that my tissuse type is a match this week. On the 4th I go in and have chest Xray, another blood draw and an injection to make sure I am not allergic.  Then I will go back on the 6th for the actual vaccine and the go back 2 days later for a check up.  After that I will get the vaccine every 3 wks for about 6 months.

I will let ya'll know how it goes.

Hi meinnj,

Well as of Monday I started the trial but had to go back yesterday for a check up and found out that my tumor markers are up (53) so I am on hold till I get a PET scan. I also live in Fort Worth, southwest area and it takes me about an hour to get there. The first wk they will bring you in do blood work, chest xray and then give you the vaccine to see if you are alergic. That is what I did Monday.  I didn't have any reactions to the vaccine except for bruising around injection site.  Then I was to go back this Wed get another round of vaccine and then go back Fri for a follow up.  After that it's every 3 weeks, vaccine on Wed. follow up on friday.  They did say you can experience flu like symptoms and headaches as the trial goes on.

Hopefully, I will have a scan next wk and be back on it the following wk. I just had a scan in Oct. and all was clear so I'm not too worried about TM's being hi.  If you need any other info just ask.

Angie

Yes it is, I spoke to them and that is the closest non military location in West

Ango

SO glad all is ok, do you mind sharing what your tm's went to with neg scan, the question comes up here so often and I have had it happen as have many others and I love to give reassurance that other things raise TM's as well. You may have had inflammation etc. (I work in Diagnostics)

keep us updated on trial - I would like to follow this same route.

hi ang, i'm so excited your in this trial.  it's been awhile since we have pm'd and i think of you often.  sounds like your doing well.  i'll be checking in more frequently to see how your doing!  tina

I thought I would bring this topic back up to the front page.  Today I finished this trial. For those of you interested in it, it was very easy.  I had no side effects at all.  I feel very lucky to have been part of the trial but I am thrilled to be done!