Clinical Trial E5103

Dear all

As a researcher, former cancer patient, and a participant at the bc discussion boards, I have become interested in learning more about patients' reactions to the  information they receive as they are diagnosed and presented with treatment plans that involve chemotherapy.

This interest has led to the development of a survey that asks about experiences with patient education materials provided at oncology centers across the nation.  This is a formal study, and the research protocol has been approved by the Institutional Review Board at Brown University, where I am on the faculty of the Division of Biology and Medicine.

The survey is anonymous and brief.  It will take you about 15 minutes to complete the survey.
To participate in this research, here is the link:

http://www.surveymonkey.com/s/PatientEducationMaterial


Your participation will add to the body of information on this topic and is intended to contribute valuable data regarding patient education materials for oncology patients.

I heard recently that there is an arm d you can sign up for if you find you were getting the placebo and with it you get avastin for a year.  my first doctor didnt' mention this, so i'm not sure about the details or if someone is confused or what.  Just wanted to put that out there.  I feel like i'm getting it.  My bloody nose surely isn't lying. lol  That's the only thing that gives me patience with this nose.   It should = avastin.

Yes that's right Mary, I was in Arm D and went on for a year total of Avastin.  Polamon, I didn't sign up for Arm D though, it was a blind trial and I just happened to be in Arm D. Good luck!!

Polamom - I was Arm B which meant I got Avistan through the course of my chemo.  My nosebleeds slowed down considerably two months after chemo and now that I am 5 months out from chemo I rarely have any at all.  Good luck on the Arm D!

Thanks ladies!!

Shoot Polamom, I had that spray in my medicine cabinet and never used it! LOL!  Glad its helping you!!

Hi Brena,

I participated in the E5103 (Avastin) trial in 2009 and was receiving the drug as I found out when I was unblinded, not a placebo. I had 5 out of 8 treatments. I was taken off the drug in July 2009 when it continued to cause my blood pressure to rise. I have had several echo's and EKG since the trial and my results are normal. Even though you didn't ask, I also participated in S0307. I am on the Zometa arm of that trial. I have an infusion tomorrow and one more after that and I will done with the bisphosphonates trial.

1. I am doing great healthwise. I celebrated being three-years cancer free in March. I had reconstruction surgery on 2/14/12 and revisions on 5/07/12. My PS did an amazing job and I absolutely love my new breasts! There are a few lingering side effects from treatment- occasional neuropathy in my toes, some chemo brain and my eyebrows and lashes will never be the same. Most annoying is the allergies I have now. I never had allergies before treatment and my onc tells me it could be a life- long thing. But for the most part, I'm alive, healthy and thriving.

2. Honestly, I cannot think of a thing I would have done differently. Every decision I made, I made with the intent that I would never look back and wished that I had done something more or differently. I have no regrets about any of it.

3. My life is going well. This experience has definitely changed me. I enjoy each day- even the not so perfect ones! My DH and I are following up on some dream plans we've had because we now know that life is uncertain. Do it today because you never know what's ahead. We bought a vacation place on the coast and spend as much time there as we can and we love every minute of it. I am also just so grateful to be alive! Looks like your diagnosis was almost exactly identical to mine. I will be done with all treatment after my September Zometa infusion. Still need nipple surgery (if I do it) and then my life will be free again. No more treatment and I cannot wait!

I'm glad to hear that you are doing well also! I keep all of you in my prayers, always. 

Hi all,

I was on the trial from June 2008 to spring 2009 (cant actually remember last day of treatment:)) I was on the arm that continued the Avastin.

 So far no recurrence, just had a checkup yesterday, which prompted me to the board. I don' think i would do anything differently except I did immediate latissimus reconstruction, and ended up deciding to have radiation (i was in sort of a grey area, and opted to do it). The radiation caused signficant scar tissue aroudn the reconstruction and i have had 2 follow up surgeries--its pretty good now. I wish i would have waited for the initial reconstruction

On reflection--the overall chemo was no big deal physically, I didnt have many side effects other than weight loss, and was able to keep going. But it was psychologically harder-my kids were pretty young at the time (12, 10 and 8), and it took a while to not feel nervous, despite a good prognosis. I am grateful i have a fabulous nurse and doctor team.  The experience also made me less patient to wait for things, not wanting to put off relationships that need attention, less willing to travel for work etc.

The first year or two is more consumed with physical, the mental part came later for me.

My doctor did say she thought some results would be coming out soon.

love to all