HER2+

If you've been to Project Lead then you learned the statisticians can control for every stage and subset because of the way the data has been entered into the database. I'm sure Overall Survival has been measured to pass the ethical criteria if for nothing else.

If there is enough data to measure recurrence there is enough data to measure Overall Survival.

The question is why hasn't OS been reported? Unless the stats are negative or show minimal survival advantage.

I found the following regarding overall survival and Herceptin.  Is this what you are looking for?

The Data Monitoring Committees overseeing the combined analysis of these trials (known as NSABP-B-31 and NCCTG-N9831)* recommended in April 2005 that the results of a recent combined interim analysis be made public because the studies had met their primary endpoints of increasing disease-free survival (the amount of time patients live without return of the cancer) in patients receiving trastuzumab in combination with chemotherapy. The improvement in overall survival also was statistically significant for women receiving a combination of chemotherapy and trastuzumab. Study results, with complete details, were published in the October 20, 2005 New England Journal of Medicine**. 

Herceptin® Combined With Chemotherapy Improves Disease-Free Survival for Patients With Early-Stage Breast Cancer 

Cue the woo friendly, iodine guzzling, imaginary "PHD study group".

Maud I don't think anyone here is pushing chemo/herceptin. Everyone has the right to choose. The problem is when people say it's ineffective and only does harm. I don't say alternative is bad or useless because frankly we don't know. There are no studies. There are proven studies for the traditional chemo/herceptin.

The poster was looking for someone who did alternative. I have seen a post like this before with few to none actually saying they did alternative and were HER2+. It is possible that BC.org is not the place these women hang or it is possible that there are not quite as many success stories as there are with traditional treatment. Barbiecorn will have to come to her own conclusions why her question has not been answered.

Sad to hear about another sister. Thanks, Maud.

Barbiecorn you asked about alternatives to herceptin. You may want to look into mistletoe. It is used in Europe.

Here's a link about herceptin:

http://www.healthy.net/Health/Essay/Herceptin_more_hype_than_hope/873/1

Those interested in stats, I'd like to hear your take on this article.

tucker

While some will dispute the article that Tuckertwo linked to because the source doesn't meet their standards for medical literature, most respect The Lancet, which was quoted in the article.   

Even The Lancet, a normally conservative medical journal, has been driven to condemn the whole Herceptin hype. "The best that can be said about Herceptin's efficacy and safety for the treatment of early breast cancer is that the available evidence is insufficient to make reliable judgments. It is profoundly misleading to suggest, even rhetorically, that the published data may be indicative of a cure for breast cancer", said a stinging editorial (Lancet 2005; 366: 1673).

Perhaps those who are so bound and determined to insist that every her2+ patient has no choice but to use Herceptin should read the article in full before attempting to dictate the treatment decisions of people who are clearly looking for alternative treatments.

Wow Tucker, did you catch that ?

"The patient information group Breastcancer.org ("your lifeline to the best medical information about breast cancer") describes Her-ceptin as "a very effective treatment". Last year Genentech, Herceptin's manufacturers, gave over $50,000 to the organization. This 'generosity' helps to give Genentech and Roche a great deal of influence, if not control, of the information flow about Herceptin."

http://www.healthy.net/Health/Essay/Herceptin_more_hype_than_hope/873/4

Pat Mom,

You posted a link to an article that was written before the adjuvant herceptin trials were complete. Therefore the editorial could have only been referring to herceptin use in metestatic cancer, not as adjuvant therapy.  Since the posters on this thread arent stage IV, herceptin's efficacy in metastatic BC is not relevant for them.

I am going to risk sounding hopelessly naive with the comment I am about to make - and it is a comment that I would make about several alternative threads:

It is so, so sad to see such animosity in a group of women who all face the same disease and are doing their best to achieve positive outcomes. Insults, animosity and arrogance....can we remember (to paraphrase a great statesman) that what unites us here on BCO is far stronger than what divides us? Can we agree that we all loathe cancer and love good health?

Is it really worth trading this much animus over a single treatment?

Think of it everyone. Will it really matter at the end of the day?

I really don't buy the tale some have that we have to protect some hypothetical newbie. We were all newbies once and survived. Somehow. Babies learn to crawl and walk, somehow. Some are being overprotective. Others are asking genuine questions. Others may really be worried about their egos. 

We need more adults in this conversation. Not one single person posting here owns the truth, has a patent on it, is the physician of anyone else posting here - or is their mother. Let's be happy that we can post and discuss - and show humility.

I'm usually the one asking to be talked down, so I'm surprised to be in this detached position. But, really, if someone doesn't want Herceptin, who am I to say anything? Those of us who have been oh, so close to death know that life is not just about having a pulse. What if not everyone wants vital signs. Some of us really want to be alive - I mean really alive. We define life beyond what it is in the medical terminology. So if FOR SOME that means a different approach, Godspeed. I would probably have considered Herceptin seriously (sans chemo) if I had been HER2+. I would never have the audacity to insist that another do the same thing. We have no window into the other's soul, no right to make her calls and it is irresponsible to provide medical advice over the Internet.

When someone comes on here and says "I have cancer and I want to treat it" we should NEVER assume they want to get rid of the malignant cells at all costs. That may be what some of us want. Others may have a more complex set of personal data to juggle. They still deserve support.

Some are looking to live as long as possible. Others may be looking to live as BEST as possible. Those two objectives may be different. We each deserve a voice. Let's hear them all. 

Sometimes, by reading some quotations of studies, it sounds as though one can only die from cancer and that there is no other risk. Risks associated with Herceptin and with other treatment are routinely minimized here. Some of us may have died from conventional treatment. Some of us WISH we had died. So while our values are the same let's not always think our objectives are identical.

Newbies will survive. Most adolescents do, without jail or drugs. Adult women can, unless anyone considers us the weaker sex. When the nurturing part of us veers into controlling and domineering, we need to sit back and examine who we are really protecting - our personal comfort zone or the "newbie"?

This post does not endorse the parlaying of opinion as fact, nor do I defend conspiracy, black-and-white theories about the medical industrial complex. I am trying to speak to the underlying animus against those who question conventional treatments.

And amazingly, I agree with what 1Athena1 posted.

Great post, Athena!

What I get out of it is that the thread started out as a question concerning Her2+ and alternative treatments but ended up being full of negative comments on chemo/Herceptin.  As I was Her2+ I thought it would be interesting to hear about alternative treatments with that diagnosis.  Why does chemo have to be mentioned time and time again?  What does that have to do with alternative treatment of Her2+?

Excellent post Athena!

If the non alternative minded posters could reconcile with the following:

"Regardless of how they are defined, it is important to recognize that conventional medicine and CAM tend to operate under very different paradigms of theory and practice. In fact, Kuhn (1970) would probably describe them as "incommensurate", since they are based on different assumptions.

Conventional medicine typically treats disease as a breakdown in the human body that can be repaired by direct biochemical or surgical intervention. The theoretical underpinning is frequently claimed to be rational and scientific. The model on which it is based conceives illness as arising from specific pathogenic agents, and views health as the absence of disease.

The concept of CAM, on the other hand, covers a diverse set of healing practices, which do not normally fit under the scientific medical umbrella. Instead, these practices emphasize the uniqueness of each individual, integration of body, mind and spirit, the flow of energy as a source of healing, and disease as having dimensions beyond the purely biological (Berliner and Salmon, 1979). The life force is very commonly seen as a crucial element of the healing process and strong emphasis is placed on the environment, the subjective experience of patients, the healing power of nature, and health as a positive state of being (Goldstein 1999). 

One way to think about the definition of CAM is to see it as a social creation that depends on the perspective of the individual who is doing the defining. For most medical scholars, CAM is defined by its location "outside accepted medical thought, scientific knowledge, or university teaching." (Ernst, 1996b; p.244).

In other words, the definition is derived from its differences to the dominant mode of health care which is conventional medicine. But this residual form of definition does not do justice to the healing capacities of CAM. Social scientists like O'Connor (1995) define CAM based on its alternative belief system with its distinctive views of the body, of health, and of the causes of illness. 

"Definitions are dogmas; only the conclusions drawn from them can afford us any new insight." Each definition is arbitrary; each has its own consequences and requires its own methodological decisions.

What is important is to recognize that CAM is a complex and constantly changing social phenomenon which defies any arbitrary definition or classification. As social scientists design CAM research, it is not necessary or even possible that there be one agreed upon definition. 

The dominance of RCTs has meant that many alternative therapies have been ignored or dismissed by the medical establishment because their efficacy has not been demonstrated by this particular research strategy (for example, British Medical Association 1986). RCTs work best for simple interventions with diseases that are easily definable and capable of being quantified. But this tactic is not always suited to CAM therapies which take a holistic approach to treatment. A holistic research strategy requires a broad view that can encompass elements of the healing process such as the role of patients, the impact of the therapeutic relationship and the non-technical aspects of treatment.

It seems clear that RCTs cannot and should not be applied to all procedures and substances. The power of the medical profession, however, may make it difficult to move away from the heavy reliance on RCTs that medicine has normally insisted on for testing the efficacy of CAM therapies. Medicine's ways of knowing are grounded in a strong background in the biomedical sciences. Medical research tends to be based on the premise that biomedicine is impartial and empirically verifiable and that there is only one objective picture of reality and one valid empirical method of verifying it. This claim leaves little room for more flexible definitions of health, more complex pictures of reality and hence more pluralistic views of how evaluation should be conducted. 

Critics of CAM often apply a double standard, showing more enthusiasm in their efforts to discredit unevaluated CAM therapies than they do in questioning the safety and efficacy of conventional medicine. 

We are seeing dramatic changes in the delivery of health care in industrialized society today. Consumer demand is increasingly driving the shape of health care which is becoming more and more pluralistic in nature."

http://www.utoronto.ca/CAMlab/cambook/intro.html 

Thanks,1Athena1 --

I'm all for the move toward more precise treatment that VR mentioned.

In the meantime... bc has many gray areas even though we want more black and white answers. One part of the problem is that the definition used for "alternative" is a black and white description even though the topic, like conventional treatment, is not black and white or true/false.

The definition used for "alternative" here is posted as:

"Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment."

We might not all agree with that. I don't. While I do think it is an attempt to define an area of information for conversation in good faith, I also think it casts doubt on whatever is posted here about alternative treatments, whether or not someone is posting about something that is evidence-based but not standard-- and vice-versa. And I think that is at least part of the reason why there are so many passionate differences of opinion here.

There are those like me who lean toward considering trastuzumab more favorably than toxic therapies, and tend to think of it as falling more into the "alternative" definition, because when it is considered "standard" it is taken in conjunction with toxic therapy. Yet when I think of it as alternative treatment I am thinking of it as being used alone.

So trastuzumab is both "standard" and "alternative", proven and unproven. Why?

Because for what are to me very flimsy "ethical" arguments favoring the addition of chemotherapy that doesn't do squat for most and does do damage for most, "standard" therapy must include it. This is true even though it is becoming apparent through neoadjuvant studies that trastuzumab has some proven positive effects when used alone.

I happen personally to lean toward believing that the primary effect of chemotherapy is whatever degree of ovarian ablation that it brings about for those who benefit from ovarian ablation. Others are free to believe that the primary effect is cell kill. I happen personally to believe (without studies or any proof, but with some logic) that since chemotherapy is considered not to accomplish cell kill of stem cells, using it does not accomplish much that is relevant other than whatever degree of ovarian ablation it brings about for those who benefit from ovarian ablation -- plus, it seems to provide some degree of peace of mind for those who believe in cell kill of non-stem cells.

Surgical ovarian ablation has been known and used for decades as treatment for bc because it helped, and is considered evidence-based treatment for bc, including being known to be comparable to some chemotherapy regimens when used with tamoxifen (and presumably, but still in trial, may be comparable to current chemotherapy regimens when used w/o chemo but with trastuzumab for those who are HER2 positive.) However, depending on the individual circumstances, OA for bc wouldn't be considered standard instead of toxic therapy or instead of toxic therapy plus trastuzumab.

So I think the definition of "alternative" for the forum is misleading, and is contributing to some degree to the intensity of the difference of opinions.

A.A.

In Europe are they using mistletoe in place of herceptin?