AE37 Vaccine Trial - for recently treated high-risk patients

shari - those of us who are Her2+++ enrolled in this trial within six months of finishing Herceptin (surgery, rads, chemo also complete), since the trial is now enrolling those who test Her2- (but may be +1, or +2) you would enroll when treatment is finished.  Just keep in mind that you would need to travel for this trial, it is every 3-4 weeks for 6 months and you have to stay for 3 days, then twice a year for 2 years - and there is a chance you will receive the placebo rather than the vaccine.  I am not trying to discourage you, just want you to understand the time commitment.  I just finished in December, will go for my first booster in June.

Shari, how did they forget to test for receptors??? That sounds slightly crazy (and crazy-making).

I know that the herceptin-status can sometimes change, but since they will do a second check after your surgery, it should be ok.

They just tested to see if it was cancer or not.. I went I a radiology place before I got doc and they send out biopsy sample to hospital who won't test for that unless told too.. I guess at that point they just wanted to c of it was cancer

Also may b hard for me of no tarn g sites in New York areas

The tested lymph node I'd what they r Uskng to base er/pr status and her 2

It did show all that stuff and I will be on hormone medicine

mini - the enrollment info you posted is true for HEr2- only - if you are Her2+ it is after completion of Herceptin.  Chemo/Surgery/Rads would have been long done by time the year of Herceptin is done.  Just wanted to clarify.

Well I was already to start next week but my insurance dug in its heels. Mda evenwent through an aappeal of an appeal... a conference call of their physician with Dr. A and still said no. Boo on uhc. How is Any drug supposed to get passed if we can't try it. Mda says. If its done without approval and I get caught taking it then they could refuse to cover any medical care ever I was looking forward to participating. Onwards I guess.

I hope to be starting the AE37 vaccine trial in the next 6-8 weeks. Going to go to Medstar in Baltimore. The coordinator has my records and said the next step is to come for a 1 day consult of some type. What did that consist of?

I know TectonicShift went to Medstar, anyone else?

I have family nearby but I think if it's a one day trip I will just stay in a hotel by myself. Any suggestions?

I've also been in contact with Angel Flights a few times. Has anyone used them for travelling to a clinical trial?

Oh they have shuttle to metro? you mean I can go all over DC and not have to worry about the parking?

I have flown with corporate angels before. there are no income restrictions, just have to be flying to designaed cancer treatment place. call them and they will tell you. it helps if your flying from one big city to another-like DC,NYC,Chicago. Tried to do flight to San Antonio but couldn't get one. not enough corporate flights go there.

I am working on free flight to san antonio now. call american  can cer society to help with that.

fredntan - if you end up at the Tenleytown metro station Sibley has a free shuttle there that goes right to the hospital.  It comes about once an hour.  I have also taken the bus from Tenleytown station (I think it is the M3) and it goes to the front of the hospital.  You need cash or a Smartrip card to pay.  I had a rental car half the time, but when I stayed with friends who lived near a metro station it was nice not to have to deal with traffic.  If you need more details let me know!

Thank you Kay_G. I am now waiting for my 30 days post treatment to be up and then hopefull will start. I would love to meet. I will keep you updated when I start. I so wish more of us BC sisters could do this trial.

hello, just saw this and realize i don't qualify for this trial but i have been wondering because many of the clinical trials i have been seeing seem to differentiate between Her 2 (0,+1,+2,+3). Only +3 is positive, but are +1 and +2 somehow worse than being 0? Why are +1 and +2 allowed into the trial but not 0, are they more high risk??

if someone could help me figure this out i would be so thanful.

Idk shelly



I am in gp2 peptide arm, or ihope I am.

Just wondering how everyone that has completed the six months, wondering how there test site reacted? I usually have 2 itchy about size of fifty cent peace, maybe little larger. But yest I had the last of sixmonth series. This one is different from normal injections. I believe tney are testing to see

how my body reacts. It hasnt given us any physical reaction. No itchy rash. She said i had this test inoculation on very first day. That one gave me 1 itchyrash localized to thigh.

fredntan - I was also GP2 peptide as I am A2 positive (I knew this prior to the trial because I have a good friend who worked in a tissue typing bank for transplants and she tested me) - my saline site stung like an SOB when it was injected but did nothing after that (to be expected, as it is just saline and the control) but my other injection did the same thing all my regular other ones did - made a red 50 cent sized semi-itchy lump that itched for 2-3 days.  I always had a pretty large area that swelled up and turned red, but was not as itchy as it looked like it would be!

fredntan - don't know if it means anything - I also think that even if we are getting the vaccine our responses would be individualized to a certain extent.  I tend to be sensitive to a number of drugs, am allergic to some, and allergic to many other things like soap, eggs, pollen, etc.  I might get a big itchy welt, but you may not, even if we both got the vaccine. I also get Prolia to help with osteopenia.  I had the first two injections 6 months apart, never had any reaction at all to either.  Would never have even known I received a drug.  I got the third one and defenitely had flu-like symptoms and fatigue for several days, which is listed as typical SE for this.  Why did I not react to the first two, then react to the third - who knows?