Herceptin for Her2 BC

Kitty, I was in the clinical trial for Herceptin. I had the same treatments you did (A/C,Taxol & Rads), and started my 12 mo's worth of Herceptin spring of '03, with a month or so off to let my heart recoup, finished in later spring of '04. That was the protocal used for the trial then, and apparently they're still going by the same. They don't know yet how long this will keep the nasty beast from coming back, but in Jan. it will be 4 yrs since diagnosis and I'm a happy camper. I see my onc every 4 mo's, and next appt. is the end of this month. Those check ups still make me quesy - butterfly stomach, but so far so good. Your right, before they tried giving Herceptin to early stage, the her2 gene was not a good outlook. Things sure look better now. Hang in there and good luck. Jud

Hi Kitty,

I was dx'd in early 2001. It's been five years, this month, since I completed my last leg of treatment (surgery, A/C and 37 rads). I'm still here and doing well.

My cancer was Her/2neu positive (3+) so they were testing for that protein, at least in my area, in '01. I was hormone neg., so at the outset, I knew I would not be a candidate for Tamox., etc.. The slides were tested again, during a consult with another renowned facility, (prior to my beginning any treatment) and also found to be Her/2neu, 3+. I was approached there regarding participating in a 52 week trial for Herceptin. I turned it down, however. I just didn't want to be involved in a trial and all it entailed. Cardiac side effects are one of the things to watch out for with Herceptin, as I'm sure you know. The rads and chemo seemed like enough to handle, to be honest. I researched Herceptin, in-depth, and just didn't feel that the risks and a whole year of my life were worth it, considering what the info (at that time) suggested. My thoughts were that the more drugs we're exposed to, the greater the risk of having complications, which can compromise the quality of our future lives. Everyone is different in how they feel and think on such matters. At the time, only a small increase in survival rates were noted and we all know that stats are just that and not necessarily applicable to any one person. So that was my choice. I think it comes down to a judgment call for each person.

If we survive, long term and cancer free, with traditional treatments, do we attribute it to the surgery, chemo, radiation or what? If we have all the suggested treatments and still experience a recurrence or met, then we can assume it did not work effectively for us, in particular. Whether that's one, five or ten years later.I think that sometimes, surgery alone is curative, if no mets. Other times, maybe not. No one can prove this one way or another. While my treatment choice wasn't exactly conservative, I felt, in my heart of hearts, that it was enough.

An interesting twist is that my oncologist, during my check up in '04, mentioned the then newly reported data on Herceptin. We often kick new stuff around and sometimes I pose questions to her about other people on different drugs or thinking of trying different drugs I'm not that familiar with and so, we've always enjoyed a great rapport. She stated that some in the medical community believed that Herceptin was still an option for patients to electively choose, even years after treatment, with no mets or problems, if they were Her/2neu positive at dx. We rolled that thought around for a bit while noting that without FDA approval, it would have to be an off-label use, etc.. It's all very interesting but I don't feel confident that anyone can say just what the benefit may be. The drug company gets a bit richer, the doctor and facility make a profit and as patients, we endure the drugs we choose and go home with a hope and a prayer. But then, it's the same with all chemotherapeutic agents. No guarantees. Just our consideration of what is offered as the "gold standard" of treatment for our particular cancer(s), together with proferred trials, off-label uses and then the consideration of complementary and/or alternative treatments.
Certainly never an easy place to find oneself in, but all of us here have been there and made our choices and that's the best we can do. Once you know what you want and how you feel about it, don't look back or get into second-guessing yourself. The journey to health holds quite enough bumps and ditches, without making ourselves
overly-stressed by fretting whether or not we're doing the right thing for ourselves. While friends and family can be wonderful sounding boards, supportive and helpful, the final decision is ultimately our own.

Crayonlover provided some great links and general info, which I hope will be helpful to you as you try to make sense of Herceptin. Re the question of how do the docs know to use Herceptin for one year...I do not have any answer other than to say that the previous (approved) and published trials have all been for the duration of one year, to my knowledge. I'm sure that somewhere there must be people who have taken the drug for more than one year, in an off-label situation, to control mets, etc.. However, you're not likely to find scientific reports of this, as such use generally wouldn't involve a sufficient number of patients, in a well controlled situation, to even qualify as a study.

It is my thought that Her/2neu is not necessarily
faster growing than the other types of bc, but it can be more aggressive. Meaning it can be a bit more tenacious to eradicate. However, Her/2neu has been documented in quite a few studies, to respond well to Adriamycin. A site which also may be helpful is www.nci.nih.gov There's a lot of trial info there, etc.. Also, if you just type Herceptin into google.com you'll find a lot of good links to explore. I prefer to visit more than just the facilities where trials are performed and the results published. I also like to find any critical/opposing points of view...who, what, when and where, how much and how long and also get the details of participants in the trial, if known. You see, if you have a procedure/drug/treatment, etc., and you're considered perfectly healthy, except for the condition at hand, then chances are, that person survive better and longer than someone whose condition is more advanced and/or if they should have other medical issues. So trial or just routine procedures, the results may be skewed based upon who was selected for the procedure/trial. Stats can be influenced by the above criteria, when healthier participants are carefully screened and chosen at the outset. We're so bombarded with commerical ads for hospitals and drugs these days that it's ridiculous. People running into their docs offices demanding certain drugs and going to certain hospitals because they state on tv that they're the best at this or that thing. It's too much competition for my system to deal with, so I ignore it. There used to be an old joke about ambulance-chasing lawyers. That was in a time, however, somewhat predating our current "medical/drug ads gone wild" onslaught, but the principal was basically the same. I've never placed much emphasis on stats.

My standard is to become educated on health issues, find a physician whom I trust and can communicate with, who listens carefully and who is open and flexible and considers my wants, needs and preferences. No ad can influence me in that objective. Beyond that, the drugs I choose are the same notwithstanding where I have them administered. At the same time though, we'd prefer not to have "Lassie" coming at us with a needle! LOL Someone wtih a bit more finesse would be preferable. It comes down to my physician and myself.

Hope I haven't painted a gloomy picture here. My aim was to try to be helpful while also remaining objective and realisitc, given the facts of the world in which we live. We must always take
some time to discover what's in our own best interest, amidst that whirlwind of shock, advice and recommendations which accompany any cancer dx.

Wishing you all the best and hoping you can find the answers you seek.

Love, light and laughter,
Ink