HER2 positive and HERA trial

I am new to the whole cancer scene so have been spending a lot of time searching the net to find answers to my questions. Yesterday I found this site and thought I'd see if anyone who reads the messages could offer some advise. My mother has just had a 3cm grade 3 HER2 positive, node negative, hormone neg tumour removed through a full mastectomy. The HER2 positve was something completely new for us and I have found your site very helpful. What I am wondering is what impact for the future the HER2 pos has for my mother. She has no indications that there is cancer anywhere else and will undergo chemotherapy in 4 weeks. At the moment it will probably be CMF rather than AC due to the increased nausea associated with AC. We live in New Zealand and she has the opportunity to join the HERA trial for people with primary breast cancer. We are wondering if this is a good or bad thing? How risky are trials and would it benefit her? Your advise would be appreciated.

Thanks so much,
Karen.

If that trial includes Herceptin seriously consider it. Side effects of Herceptin are very rare and can usually be taken care of with Benadryl. I am in trial myself and thrilled to participate.

RUN, do not walk, to get on a trial with Herceptin, if you are able! That's my humble opinion.

Your mother's symptoms are almost identical to mine. I have been researching this. If she can access herceptin, I would suggest that she try get do it. My oncologist has told me that it kills roughly 50% of metastatic cancer (breast cancer that has traveled to other parts of the body such as the liver or bones). They are experimenting with it at stage I (before it has travelled around the body). There are almost no side effects from herceptin (but you must pass a heart test to take it). There is a very high recurrence rate with people who are HER+++. Herceptin works best with people who are plus 3 and less so with +2 &1. People who are the most HER postitive are also at most risk of experiencing metastatic cancer.
At least one of the trials that I am trying to get on myself is a stage 3 trial. This is the best kind of trial to get on because it is the final one before it goes out to the general public. At stage one they are experimenting with dosing and at stage two they have more subjects. By the time they hit stage 3 they have some stats to work with and they feel safe enough to involve thousands of people.

Thanks for your replies. One more question - how do you know whether your tumour was HER2 +1,2or3? This is not something I have heard the oncolgists here talk about. I'm not sure whether that is even tested here in NZ.
Christine, thanks so much for providing a forum where even we at the 'bottom of the world' can get up to date information.

Karen

The pathology report would note Her2+,++ or +++. There are two types of test. The FISH test is the most accurate apparently. And although, this gives you more information, if your mom is Her2+ at all, do everything you can to get her on Herceptin.

By the way, two women (Vicki and LindaW) from Australia (I believe) are on this site and have their own chats in the Chat Room. Look down this Message Board to the string that starts "Apologies Everyone." Just thought you might like to make a "semi-local" contact.

Love and light,

Lisa


Love and light,

Lisa

And don't forget Lyn from Queesland, she was the first survivor from down-under on this site.!!!

Karen,
Go to our Site Index and scroll down to HER2 News.
Just about everything that you need to know is there.

Hugs, welcome and well wishes,
Christine

Just for your information about trials. I believe trials are very good. However, back in '93 I was in a trial for A/C, very large dosages back then. Was glad to be in that trial. When I was finished with my chemo, I wanted to start Tamoxafen and they told me it was not in the trial and should I use it I would be kicked out of the trial. After much research I decided to take the Tamoxafen and it was the best decision I made. Just want you to know that after doing some research on your own, and getting a second opinion, should you decide you want to take something other than what the trial is suggesting, like herceptin, you don't have to stay in the trial.

Yes, and let's have another go on Monday. I apologise in advance for any further power failures. This freak weather is causing us to look at our old (out of order) generator and have fantasies of repairing it. I hope to be there on Monday at 9pm eastern (daylight saving) time. I hope that's not too late in NZ.
Regards,
Vicki

I am from Austria, Europe, just ending my first year in HERA trial. Must underline: RUN for it!

Herceptin is much easier to take than chemo - the safty follow-ups on HERA trial are very good.

I myself count on the army called Herceptin!

Greetings to the other end of the World!
Alice, Vienna, Austria