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Old 01-23-2004, 12:09 PM   #1
eric
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Hi all,

The more time that I spend on this board the more that I appreciate the imortance of trials. As a result, I would like to hear your thoughts and recommendations on the following...
My wife is stage IIIa with, according to IHC her2 +2-+3 (awaiting FISH confirmation). The onc put her on a dose dense regimen (every 2 weeks rather than 3) which appears to have ruled her out of most trials. She has just completed 4AC and is scheduled for 4 taxol, to be followed by weekly herceptin and radiation. Her onc has not brought up any trials or vaccines and feels comfortable with the plan. I, however, am less comfortable for several reasons...
* by enrolling in a trial she could contribute
* it seems that she could take herceptin after a vaccine trial, but not the other way around.
That being said, I am concerned about...
* a recurrance if she defers the herceptin and the vaccine doesn't work for her
* she does not tend to react well to drugs (she had to be hospiatlized for 2 of her 4 AC treatments). As a result I would be very concerned with her going into a trial to determine proper dosages.

Since my wife prefers not to be exposed to any information yet I cannot ask her what she would like to do but I would like to know your thoughts as well as any recommendations of trials.
Thank you and best wishes...Eric
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Old 01-23-2004, 01:51 PM   #2
jessica
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Hi Eric-
I agree that we all need to contribute to finding a cure...ultimately, how we approach our treatment is a very personal one.Regarding herceptin vs. vaccine, is there any data that supports higher efficacy for prevention of recurrence in early stage BC with herceptin vs. prevention fo recurrence in early stage BC with the vaccine?I don't think I've seen any data that supports either as a stronger preventative drug.
I was faced with a similar decision when I was going through treatment.After 8 weeks on Navelbine/Herceptin and my disease progressed, so I had the choice of enrolling in a Phase II clinical trial or switching to Herceptin+Taxol.I chose to participate in the clinical trial(taxol+study drug, NO herceptin).27 weeks later, I was told my disease was stable and taken off the trial.3 weeks after that,we discovered new liver mets & some suspicious lung and sternal lymph nodes stuff.At that point, I went on taxol/herceptin & 12 weeks later declared NED.
Were those 27 weeks on the clinical trial wasted?Do I regret not going directly to herceptin/taxol instead of enrolling in the clinical trial?I don't think so, and my onc believes my exposure to the study drug and now the herceptin are what are keeping my disease at bay-especially since my first attempt at treatment with herceptin resulted in disease progression.
No one knows the answers.Just go with confidence that you are making the best decision possible for you and your with the most education and information you can find.
I hope I have been helpful.Please feel free to contact me directly.Praying for you and your wife, take good care of her.
Keep the faith,
Jessica
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Old 01-23-2004, 10:49 PM   #3
Kitty
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Eric,

I understand what you are saying and clinical trials are very important to help find a cure. With that being said, I entered a clinical trial when originally diagnosed with her2+++ in hopes of getting herceptin. Unfortunately, there are no guarantees you will be selected to receive the herceptin, which was my case (a computer randomly selects which arm of the trial you will be in). Initially I was very disappointed but also I knew if my cancer progressed Herceptin would be available to me. That has happened with mets to the liver. After being on weekly taxol/carboplatin/herceptin treatments for 11 weeks my tumors have all but disappeared which is amazing. At any rate, I was investigating the vaccine trials out of Seattle before my recurrance was discovered. The only unknown factor which one needs to consider is if participation in this particular trial with the specific vaccine being used would prevent future used of or somehow alter the effectiveness of Herceptin. No one can really answer that yet. In my case the recurrance was found before I could make a decision. One should always understand entering a clinical trial should be approached with the attitude you are helping those who get this in the future and with any luck you may benefit in the deal - there are no guarantees of the outcome but I think it is worth it and will do it again if the right opportunity presents itself. On another note, my friend started treatment on the two week regimen as your wife is on and too had a very difficult time with it. As I understand the dosage is the same one would get every 3 weeks and having been on that regimen it is tough. She made it through and is doing well. There are some very compelling studies that indicate this regimen works out better than the 3 week deal. I hope she can hang in there, take one treatment at a time, and by the time she reaches radiation it will be a piece of cake. Best of luck to you and your wife.
Kitty
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