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Is Herceptin really the miracle drug it is made out to be?

Deblc
Deblc Member Posts: 154

I posted this in another thread but thought it would be good to start a new thread as many here are very knowledgeable as to research etc. and I would really like to understand this. I found the following info on this website 

"More than 89% of the women who got adjuvant Herceptin were alive after 4 years, whether or not they had a recurrence (overall survival) compared to 87.7% of the women who didn't get adjuvant Herceptin. This difference in overall survival wasn't significant, which means that it could have been due to chance and not because of the difference in treatment."

I'm trying to understand this. Everyone hails herceptin as a miracle drug. If the above is true (and as I said, it's on this website) how can herceptin be the miracle drug that it is purported to be? 

Here is another article questioning the stats and how they are presented to the public.

http://www.healthy.net/Health/Essay/Herceptin_more_hype_than_hope/873/2

Anybody have any insight on this? 

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Comments

  • leggo
    leggo Member Posts: 379
    edited June 2014

    Deb, hope you don't mind. I made your link clickable. I'm very interested in responses so trying to make it as easy as possible.

    http://www.healthy.net/Health/Essay/Herceptin_more_hype_than_hope/873/2




  • Deblc
    Deblc Member Posts: 154
    edited June 2014

    Thanks so much Leggo, I am very tech challenged :).  Hoping that people weigh in on this.

  • lovewins
    lovewins Member Posts: 570
    edited June 2014


    I am also very interested.

  • leggo
    leggo Member Posts: 379
    edited June 2014

    I'll get the ball rolling. First, to be clear, I was not on herceptin until my mets diagnosis, so adjuvant not prophylactic. It was an epic fail. No regression, no stability, just heart damage, which in my case was irreparable, though that's not usually the norm. Hope there's some positive stories too, because in all honesty, to me, it's not even remotely a "miracle drug". Quite the opposite. 

  • leggo
    leggo Member Posts: 379
    edited June 2014

    Just want to point out, I was initially diagnosed 3b in1996. I stayed disease free until 2006 without any help from herceptin, so there's that.

  • oranje_mama
    oranje_mama Member Posts: 79
    edited June 2014

    Also on this site (http://www.breastcancer.org/research-news/20121008) - based on 8 years of follow up of Her2+ women published in 2012:

    "The researchers also reported that women who got Herceptin were about 24% less likely to die from breast cancer than women who got the placebo."

    That's pretty significant.  They also reported only 1% with serious side effects including heart.

  • leggo
    leggo Member Posts: 379
    edited June 2014

    Sorry for all the edits. Im using text to talk while multi-tasking on the phone with Best Buy.....made for some nonsensical posts.Loopy

  • leggo
    leggo Member Posts: 379
    edited June 2014

    That 1%, hmmm. Of the five women I know personally from my clinic, ALL have had heart damage; some slight, some severe. All recovered after stopping herceptin, but not me. I wonder how that 1% is being gauged. Meaning no damage? Slight damage with recovery? 

  • Deblc
    Deblc Member Posts: 154
    edited June 2014

    kayb, are you sure survival rates include death from any cause? On the cancer.net website "understanding statistics used to guide prognosis" , it says "Survival statistics, usually given as rates, describe the percentage of people with a certain type of cancer who will be alive a certain time after the cancer is detected. Survival rates can be given for any length of time. Cancer statistics are usually given as a five-year relative survival rate; this describes the percentage of people with cancer who will be alive five years after diagnosis, excluding those who die from other diseases."

  • Deblc
    Deblc Member Posts: 154
    edited June 2014

    thanks !

  • leggo
    leggo Member Posts: 379
    edited June 2014

    I hate statistics. They can be so easily manipulated. So, upon doing some reading, the 1% appears to be serious cardiac events (meaning death) and the other cardiac events group, of which I consider myself to be a part of because I didn't die, is essentially 11.54%. That still seems low to me (actually I personally think it's a manipulated statistic). Anyhoo, I guess it's up to each individual on whether or not they buy those numbers. Enough statistics for me.....I hated that class....looking forward to real life experiences and their opinions on it being their miracle. Just from my personal experience, it's going to take alot to impress me. I got my ten years of disease-free survival without it and got considerably sicker with it.

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited June 2014

    I know of a Stage IV sister on here who is NED all because of Herceptin and that is 5 years later - she is still treated with it.

  • BlueFox
    BlueFox Member Posts: 26
    edited June 2014

    Much of the content of article you have quoted just tells us what everyone knows already ie 

    1/  Herceptin is only relevant to women with HER2 positive breast cancer (25% of all cases).  People who are not HER2 positive don't benefit, but they are not put on Herceptin anyway.  So your point is?

    2/  Even for HER2 positive cases, it does not cure everyone.  Duh! Who ever said it did?  What is claimed (and is supported by strong evidence from a number of good studies and trials) is that it roughly reduces the rates of recurrence and death from cancer by somewhere between a third and a half.

    3/  Evidence for these benefits relates to Herceptin taken with chemotherapy ie the trials looked at comparing people with chemo alone and chemo and Herceptin.  But most people who need Herceptin are at higher risk, so they also need chemotherapy anyway.  (Chemo also gives a big reduction in risk.).  So your point is?

    4/  Herceptin has risks eg Heart damage.   The figure of 1 in 25 is based on a paper published in 2002.  With modern treatment the patients have regular heart scans.  Most of the negative effects of heart damage is reversible, so the risk of permanent heart damage should be much lower now.

    The paper does make a big deal about a few things that are unimportant eg "In
    the trial that compared Herceptin to no treatment, death rates after
    one year "were not significantly different", with just over 2 per cent
    deaths in the untreated group, and just under 2 per cent in the
    Herceptin group."  
    Hardly surprising.  Of course you would not expect to see a noticeable effect at one year.  For early breast cancer  most people who will be killed by the cancer survive for much longer than a year, so you will not see much of an effect at one year.  The majority of people who died within a year probably had undetectable metastatic cancer.

    Back in 2005, some doctors were unconvinced of Herceptin's efficacy and safety.  But things have moved on since then evidence-wise.  See for example: http://www.medscape.com/viewarticle/775835

    The article quotes many papers which show that Herceptin reduces the risk of recurrence and death by between a third and half (ie the widely accepted figures) but somehow concludes that this means that Herceptin is massively over-hyped. 

     For most HER2 positive people, this sort of risk reduction is huge!

    Other adjuvant treatment (eg chemo, hormone, radiotherapy) also reduces the risk dramatically.   Most HER2 patients are higher risk to start with, so we want everything that is going.  My risk of dying from cancer within 10 years with surgery only (ie no adjuvant treatment) is around 50%.  By taking chemo, RT, Herceptin and hormone tablets, it is down to less than 20% - still too high for my peace of mind but much better than 50%.

    All in all a very silly article,

  • BlueFox
    BlueFox Member Posts: 26
    edited June 2014

    Sorry to hear that your insurance may not let you finish Herceptin.  I wrote my piece before I read Kayb's post - I thought you might be considering turning it down.

    As long as you've had some Herceptin treatment you will get some benefit.  There was a trial that showed there was no benefit in having 2 years versus 1 year of Herceptin.  Another trial currently underway is comparing 6 months of Herceptin versus a year (as there was some evidence (but not clearcut) that people might get most or all of the Herceptin benefits from a shorter course than a year.  

    Until the results are ,one year remains the standard.  Get a year's worth if you can, but even if you get less than a year you will get some benefit and it may turn out that you actually get the full benefit (depending on the results of the trial).

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited June 2014


    kayb,

    Testing for HER2 wasn't done on a standard basis in the US at least until the trials reported initial success, and  there was only more widespread testing done at first in central areas, until into the 2000's, even though the trials were offered in the late 1990's.

    When mine was done in 2002 at a central cancer center and I tested positive, no one, not even my onc, said squat about HER2 status to me. In part that was because the HR testing came back right away and the HER testing took longer to return the conclusions. But even so, when I was recommended to do chemotherapy there was zero explanation as to why, as late as 2002, at a primary cancer treatment center. I did not find out I was HER2 positive until I started asking for copies of some things after doing treatment and was on tamoxifen.

    How can a person ask for specific test results if they have never heard of HER2 and are not told they are HER2 or that they were tested for HER2? 

    So even when women were tested, they weren't always told they were being tested or given the results in the early days.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,645
    edited June 2014

    Well said kayb. I wish that were not true but that's reality. I doubt anything will ever be 100% and I doubt that such strong medicine will not have adverse effects on some people. I am not HER2 +, but I have been in the small minority who suffered rare complications from an otherwise "easy" procedure, so I understand from that point of view.

    Caryn

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited June 2014


    Bluefox,

    Trastuzumab has improved outcomes for HER2 positive patients. Speaking strictly for myself, even though as it turned out (thus far at 12 years out) I never had any and never needed any so would not have benefitted from it even though I would have been counted as "benefitting from it" had I had it, it makes sense to me to do it unless one has heart problems to begin with, or unless it is a huge hardship of some kind to have it.

    There are arguments in favor of including chemotherapy and against it. It is kind of a half full or half empty glass. If one has to make huge sacrifices just to complete it in addition to trastuzumab, the benefit is perceived differently, because the failure after huge sacrifices has a greater impact.

    I received chemo alone, but can't say whether it helped or not.

    I'm not a great numbers person, but the way I read the information, the mandatory addition of chemotherapy works initially on the short-term for somewhat less than half of those receiving it, and eventually fails even for some of that less-than 50% group for whom it initially worked. So, to me that means most (more than half) of the patients receiving the mandatory recommended treatment (with chemo) will recur. Correct?

    That doesn't mean there isn't benefit to doing it. It just makes the choice a little clearer. 

  • leggo
    leggo Member Posts: 379
    edited June 2014

    For the record, I had a perfectly healthy heart (that of a 20 year old according to family doc) before starting herceptin. No coronary artery disease, no valve issues, no high blood pressure, not overweight, ran daily. 

  • leggo
    leggo Member Posts: 379
    edited June 2014

    AlaskaAngel, glass half empty/full is a great analogy, to which I would like to add "if I knew then what I know now".

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited June 2014


    leggo, I was just thinking it should be acknowledged that in addition to the over-50% recurrence among those who do recommended treatment, it is also meaningful to indicate the cardiac risk.

    Each person looks at it differently. On a personal basis, had I been told I was HER2 positive and had I understood that the best odds possible were still over 50% for eventual recurrence, I would never have chosen to add the chemotherapy as a stage 1, 1.6 cm HER2+++ with the advantage of being HR+.

  • BlueFox
    BlueFox Member Posts: 26
    edited June 2014

    If we are talking about early breast cancer, then my (layperson's) understanding is the benefits of adjuvant chemo are long term.  I've not seen any studies that indicate that chemo just delays recurrence.  With Herceptin, they know the benefits last at least 8 years, but probably much longer.

    On this basis, the benefits of chemo (and probably Herceptin) are permanent.

    People can recur after 10 years, but this is not because the adjuvant chemo has stopped working for them.  The annual risk of recurrence is highest in the early years, but there is still a risk out to 20 years or more.  My understanding is that chemo reduces the risk of late recurrence as well.  The late recurrers are not earlier recurrers who were delayed by chemo, they are people who would have recurred late anyway.

  • leggo
    leggo Member Posts: 379
    edited June 2014

    Good point AlaskaAngel. Having said that, I know I'm an anomoly. No way the excessive heart failure, much less the non-recovery from it could have been predicted by anyone. 

    I am really quite concerned that EVERYONE I know who has had herceptin has had some heart damage, mostly in the form of a reduction in ejection fraction with full recovery, but several with more severe heart damage.

    Edited for clarity because it sounded like I was the only one with severe heart damage and I know that's not the case.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited June 2014

    One thing I never understood is why the addition of chemo shows on my graph as being protective for only the first 5 years, and drops in efficacy after that like a rock. So.... I'm not so sure, Blue Fox. (Puzzled, and not convinced.....)

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,645
    edited June 2014

    Good point. Anomalies do occur and neither we nor all the great minds in the medical world will ever be able to predict them.

  • pupmom
    pupmom Member Posts: 1,032
    edited June 2014

    Caryn, I suspect some anomalies result from undiagnosed conditions. For example, in preparation for hernia surgery, my DH accidentally found out he has a heart murmur. If he had been a bc patient receiving Herceptin, that hidden problem might have resulted in heart SEs.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,645
    edited June 2014

    Yes, so true and there is no practical way to foresee those things.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited June 2014


    kayb,

    Like Leggo, I had excellent cardiac condition due to similar general condition, and if offered trastuzumab I would have done it in preference over doing chemotherapy, with OA for the only good I likely got out of doing chemotherapy.. But that is based on genuine informed consent, not what I was given.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited June 2014


    kayb, I was looking at the info I had posted that mentions the 2011 info, and separately at my personal risk graph. (I'm still chewing on the current info out of ASCO.)

  • rozem
    rozem Member Posts: 749
    edited June 2014

    im not the best at stats either (barely passed my university psyc stats) but being from Canada w public healthcare there has got to be some very complelling evidence for them to cover an entire year of rx at over75k