Herceptin for Her2 BC

Kitty3571 Member Posts: 48
edited March 2014 in Breast Cancer #1
Hello all, I'm an 8 month BC survivor, 40 yrs old - 2.2 cm w/lumpectomy - Her2 positive. Received A&C, Taxol & Herceptin + 33 Rads currently undergoing (had my 2nd rad this morning) I was a little bit more educated about Her2 type cancer & the drug Herceptin last evening in a group discussion....and my question was "how does my doctor determine that only 1 year is sufficient to receive Herceptin? All the informaiton I received about my type of cancer (which only affects 25% of cancer patients I'm told) was very informative but frustrating at the same time. I'm told that the FDA has not yet approved this drug for use with cancer patients who do not have metastisized (spelling?) breast cancer. So what happens to my Her2 cancer cells once I stop the wonder-drug Herceptin? I was also told that before Herceptin if you had Her2 pos cancer that the regular treatments of chemo, etc....did not favorably respond and therefore there was not much that could be done for means of survival. So if this is true, I was diagnosed at a very good point in time for treatment because they have only been testing for Her2 since late 2003, early 2004! I guess my concerns are, since I have this rarer than normal bc cancer called Her2, are my chances of getting a reoccurence higher for this very fast, agressive cancer? My tumor was not detected at my annual exam, 3 weeks later I started having pain which I delt with for approx. 3 more weeks before going to get checked - one week later I was diagnosed with bc, one week after that I was in surgery! It all happened so fast I couldn't even react to what was going on. Is there anyone else in my shoes? I'm still learning more and more each day about this horrible disease and trying to educate myself but it sometimes becomes difficult to understand, I feel like I need to be a genious just to get it all straight! Thanks for listening!!! God Bless, Kitty


  • Crayonlover
    Crayonlover Member Posts: 11
    Kitty~ I am a 6 month survivor of BC. I had a double mastectomy in April. Six weeks ago I finished my chemo and have started a year's worth of Herceptin treatments. I had early stage BC, no lymph node involvement and I am Her2+ and Estrogen +. Funny, I asked my onco the same questions about Herceptin and this is what he told me. Until only recently (Spring 2006), Herceptin was only approved for use in treating advance stage BC (metatasized) with lymph node involvement. Clinical studies showed that Herceptin treatments were extremely effective in treating early stage BC as well. Until recently, doctors would have to use Herceptin "off-label" if they wanted to treat a patient with early stage BC. The FDA approval came into effect recently. As far as why Herceptin is used for one year? I believe that the guidelines that were followed for the clinical trials used a specific chemo cocktail and one year's worth of Herceptin. Most of the docs follow the regimen as tested in the trials.

    Some of your questions, I cannot answer and you should call your onco. Discussion groups are helpful but sometimes you don't get accurate information especially as it pertains to your case. If you are interested, go to www.oncolink.com, the University of Pennsylvania oncology website. You can ask Herceptin questions there. The oncologists at PENN respond. Also, go to www.susanlovemd.org and do a search on Herceptin. One article states:

    Trastuzumab (brand name Herceptin) was approved for use for women with metastatic disease in September 1998. In 2000, three trials were initiated to test the safety and effectiveness of trastuzumab in the adjuvant (after surgery) setting when used along with chemotherapy in women with early stage disease. These three trials were NSABP B-31, NCCTG N-9831, and BIG HERA.

    In April 2005 the three trials were stopped about two years early when researchers found that women who were given trastuzumab along with chemotherapy were 50 percent less likely to have their cancer recur. A full review of this data was published in the New England Journal of Medicine in October 2005, generating many news stories. In February 2006, Genentech, the company that makes Herceptin, began the process of seeking FDA approval for Herceptin's use in the adjuvant setting for women with early stage disease.

    Many oncologists believe the findings from these studies are strong enough to begin recommending that women with HER2-positive tumors receive Herceptin as part of their adjuvant treatment, even though the FDA approval is not yet in. Doctors can use a drug in this way if they believe doing so is appropriate. This is called an off-label prescription.
    ~~end quote~~

    There is a lot of other good info on susan Love's web site as well. Crayonlover
  • JKAlley
    JKAlley Member Posts: 84
    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
  • nancys
    nancys Member Posts: 323
    Kitty, I was Dx'd as Her-2/neu 3+ in 2000. I participated in a trial, hoping to get into the trial that got Herceptin BUT I did not. I was randomized into the group to get standard therapy which was A/C and Taxol and 33 rads. The only difference in my treatment was that Tamoxifen was started at the same time as my first Chemo. My Oncologist explained to me that Herceptin was indeed a new wonder drug to fight Her-2/neu and he would give it to all his patients if insurance would pay for it. He also told me that Chemotherapy worked better when there was the her-2/neu factor present. I took Tamoxifen for the recomended 5 years and now am taking Femara for a 2 year period. Femara is another drug talked about as a new breakthrough therapy. Maybe you can talk to your Onco about the hormone drugs and decide which is the best choice for you. Will warn you that Femara is costly @ $250.00 a month without insurance. Good luck and big hug, Nancy
  • inkblot
    inkblot Member Posts: 698 Member
    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,
  • Susan956
    Susan956 Member Posts: 510

    I am one of the roughly 20% of the people that are put on Herceptin who have to discontinue it pior to the end of 1 year due to heart issues. My diagnois was almost identical to yours: 2.2 cm w/lumpetomy, A/C, Taxol & Herceptin, ER/PR+ so I am on Arimidex for 5 years, 33 Rads and did 26 weeks of Herceptin. Had to stop Herceptin due to problems with my heart. My heart has nearly recovered and it has been about 5 months since my last Herceptin infusion. It took my Cardiologist finally telling me I had no choice but to stop to make me stop Herceptin. The stats on it were so good for reducing the risk of cancer recurrence. So if I were you I would try to take the 1 year trip of Herceptin, but make sure that you get your Onc to monitor your heart closely. Mine did routine echocardiagrams.

    Take Care... God Bless....

  • Kitty3571
    Kitty3571 Member Posts: 48
    Thanks to everyone who took time to respond - I found the information to be very helpful. I already checked out some of the links mentioned and am continuing to learn more & more about my type of cancer & the meds I'm on. I truly feel blessed that others would even take the time to answer me in such great detail. It just proves that there are truly caring people out there willing to help in any situation and for that I'm thankful. I'm also feeling overwhelmed today, like I could just cry at the drop of a hat! Having problems with my teeth, saw the dentist this morning, said I need a route canal - YUK - I'm terrified and don't want to have it done but don't have a choice. Have to go back next week - Just feel like it's always something, what next? Why me and so on....Just feeling down & crapy today. Grouchy!!! Anyway, thanks again for listening - I'll post again after I give my list of Q's to my Onc tomorrow.
    God Bless you all - Kitty