Johns Hopkins Her2 Vaccine Trial

[Estelle]

Hi all,

I just got accepted into the Johns Hopkins Her2 vaccine trial. Is anyone else out there in this trial? I met at one woman from California who is participating -- I am very lucky to live in the DC area and be so close to JH, where I get my treatment. So far I had my scans (all clear!!!), and peptides (which stung like crazy); first vacccines are on 3-14. I'm cross referencing this in the Her2 board as well.

Estelle

[Jackie07]

Congratulations! Estelle. Good luck to you and please keep us updated.

[feonad]

What stage is this for. Good luck.

[feonad]

I asked my doctor and she said it was stage 4 only. Sounds good does it?

[Estelle]

Completed my first round of vaccines. Burned like you know what but ok now.

feonad,
the study I am in is run by Dr. Leisha Emens at Johns Hopkins. She has two studies and recently added the her2 specific including stage III like me. I also think the University of Washington study has a stage III arm. If you are interested in pursuing a vaccine trial, keep looking -- there are several Stage III vaccine trials out there. A good source is clinicaltrials.gov. The information they provide lists the inclusion criteria. Get the information and take it to your dr. Good Luck.

[Jackie07]

Any update?

[Estelle]

Thanks for asking Jackie. All is going very well. I have completed two cycles and am beginning my third cycle tomorrow. Then I am off for 5 months (except Herceptin every three weeks), then a booster round. So far I am tolerating it very well; all my bloodwork is looking really good. So I am feeling really good about the trial.

Estelle

[schoolteacher]

Glad to hear you are doing well.

Amelia

[jkdowl]

How are you doing after trial? I am thinking about doing it but concerned about time commitment. I would have to fly there, spoke to Dr. Emens today about it.

[sandra digilio]

Hi, glad to hear you are doing well on the trial! I would love to do a trial of some sort myself.

[sandra digilio]

How can I get on this trial?

[annmask]

Do you have to be NED to qualify for this trial? What is the name of the trial, then we could look it up to scan for the details. I am so happy to hear that you are doing so well!

[jkdowl]

http://clinicaltrials.gov/ct2/show/NCT00847171?term=Emens&rank=5

This is the link to the trial. You do have to be NED. I have my first consultation in 2weeks.

[karen z]

Estelle,
Glad to hear your news and that you are doing well on the trial!
Best,
Karen Z

[Estelle]

Thanks, Karen. I haven't posted here in a while -- I am all done with the trial -- finished in November. did very well on it. Now I am in waiting stage -- no active treatment a little scary, but I know I have hit it with everything available. I have my post trial 3-month check up next week!

JK -- Good luck to you with the trial. You will find the crew all very professional and very, very nice.

[Adriana Mangus]

Hi Estella,

Congratulations on finishing the vaccine trial. You are so fortunate to have participate and had no complications whatsoever. Stay in touch, please.

Love,

Adriana


P.S. I will see my doctor tomorrow, no longer on the tdm1 trial. I will post as soon as we make a decision as to "what's next"

[JillaryJill]

Estelle,

I called John Hopkins today and talked with Maureen and the Dr. I live in Chicago so it would be a large commitment for me to participate in this trial. Your diagnosis is similar to mine with alot of nodes involved. Just out of curiosity, after your initial treatments, what did your onc say was the percentage of recurrance they see with your diagnosis. Why did you decide to do the trial? Could you work during this trial?

[Jackie07]

Jkdowl,

How did the consultation go?



Estelle,

How was your three month check?

[Estelle]

Jackie, thanks for asking. It went very well -- no scans or anything at this time -- just blood work (looked "excellent"), and physical exam. There were no indications that I am not still NED. Its still a little scary with no treatment, but I have fought it every way possible. However, I am not returning to "normal", or returning to anything for that matter. I am moving forward!

[Candy Jacobson]

Hello, I am considering a trial at the University of Washington in May or June of 2012. I believe I want to do the trial, however, I am a bit scared even though I feel like I have had most of my questions answered. It is new terriotory for me, and the unknown. What do you think? How was your outcome on trial or trials?
Candy

[jkdowl]

I had my consultation at John Hopkins last week, I am still waiting to hear about insurance approval. They are doing all the legwork for approval, I should hear by Monday. Will keep you all updated.

[jkdowl]

Started my second cycle on vaccine trial and tolerating it well.
The doctor seems happy with my response so far. Will keep you all updated.

[Jackie07]

Jkdowl,

Thanks for the update. Sounds like everything's going well.


Caroline,

Any update about the trial at U. of Washington?