early Christmas present--10 yr overall & bc specific survival results just published!
 

from the two key trials which led to approval of herceptin for adjuvant use.

And cardiac problems now estimated only at 3% with majority of these reversible

RELEASE DATE: 15-Dec-2014
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Contact: John Wallace
wallacej@vcu.edu
804-628-1550
Virginia Commonwealth University
@vcunews
Herceptin found to improve long-term survival of HER2-positive breast cancer patients

VCU Massey Cancer Center physician-researcher Charles E. Geyer, Jr., M.D., was the National Protocol Officer for one component of a large national study involving two National Cancer Institute (NCI)-supported clinical trials that demonstrated that trastuzumab significantly improves the long-term survival of HER-2 positive breast cancer patients. The combined study was designed to determine the long-term safety and efficacy of the drug trastuzumab, which is commonly known as Herceptin and is primarily used alongside chemotherapy to treat HER2-positive breast cancer. The combined study focused on both the overall survival rates of patients up to ten years post-treatment as well as the known and potentially harmful side effects to the cardiac system.

Published in the Journal of Clinical Oncology, the study found that Herceptin, when added to chemotherapy, improved 10-year survival from 75 percent with chemotherapy alone to 84 percent with the addition of trastuzumab. Additionally, results also demonstrated continued improvement of survival without cancer recurrence--the 10-year disease-free survival rate increased from 62 percent to 74 percent with the addition of trastuzumab. Although heart problems are recognized side effects of Herceptin, the incidence rate of such events was found to be about 3 percent and the majority of those patients recovered from the initial effects.

"We have found that when Herceptin is used in combination with chemotherapy, a patient's survival is significantly improved," said Geyer, who serves as a senior scientific advisor to the NSABP and at Massey is the Harrigan, Haw, Luck Families Chair in Cancer Research, associate director for clinical research and member of the Developmental Therapeutics research program, as well as professor in the Division of Hematology, Oncology and Palliative Care at the VCU School of Medicine. "There are minimal long-term side effects, and the likelihood of the cancer recurring is greatly reduced."

The study was designed to provide much needed long-term efficacy data on Herceptin--a proven effective treatment, but one without much information on the role it plays in patients' long-term survival. The study combines data from two trials: NSABP B-31, led by the National Surgical Adjuvant Breast and Bowel Project (NSABP), and NCCTG N9831, led by the North Central Cancer Treatment Group (NCCTG). Each trial was designed independently to analyze overall survival rates of patients with early-stage HER2-positive breast cancer. The study specifically addressed whether or not the patient experienced a cancer recurrence and if there were any harmful side effects that would diminish favorable treatment results.

The local principal investigator leading the NSABP B-31 trial at Massey was Harry Bear, M.D., Ph.D. Bear, who is the Dr. Walter Lawrence, Jr. Chair in Surgical Oncology, director of the Breast Health Center and medical director of the Clinical Trials Office at Massey, also serves on the Board of Directors of the NSABP Foundation, Inc.

Herceptin was approved by the Food and Drug Administration in 2006, based on the initial results of these two studies, as an adjuvant treatment for HER2-positive breast cancers, which test positive for the HER2 mutation and are often more aggressive than other types of breast cancers. HER2 - human epidermal growth factor receptor 2 - is a protein that plays a significant role in breast cancer. HER2 proteins are products of the HER2 gene and work to control the growth of healthy cells. If the proteins are overexpressed, or if the HER2 gene is amplified, the cells can grow uncontrollably and become cancerous. Approximately 15 to 20 percent of invasive breast cancers result from HER2 gene amplification or overexpression of the HER2 protein.

Additional trials are currently underway to try to improve patient outcomes by using Herceptin in combination with various other drugs that also specifically target breast cancers with overexpressed HER2 proteins. Other trials are investigating applications of Herceptin for different cancers. For example, one study is presently investigating whether or not patients with breast cancers with lower amounts of HER2 protein might also benefit from Herceptin's promising results.

###

This study was supported by NIH grants U10-CA25224 and CA129949; NSABP grants U10-CA12027, U10-CA69651, U10-CA37377 and U10-CA69974; by the Breast Cancer Research Foundation; and by grants 35-03 from Genentech. P.A.K. received research funding from Cancer and Leukemia Group B.

The full study is available online at: http://jco.ascopubs.org/content/earl....5730.full.pdf

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Good news indeed...I feel so lucky to have benefited from this protocol as I meander toward my 10 year Mark!

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

I am beyond 10 years and had Herceptin after chemo was completed and not with chemo. It must have helped too.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

I am so happy that Genentech and others continued the research beyond Herceptin.

These numbers are a bit shocking. I suppose because everyone is lumped in together.
I am truly looking forward to seeing long range data for the Herceptin/Perjeta combination.

The Disease Free Survival and Overall Survival numbers for the current generation of Her2 breast cancer patients will be even better. What a difference a decade makes!

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

I am celebrating my 10th Christmas thanks to God and Herceptin

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

We are celebrating Christmas 2014 after being told that Nina had 3 to 6 months to live at Christmas 2011. She had Intrathecal Herceptin starting January 2012, with IV Herceptin in February 2012. We switched to TDM-1 for the systemic in August 2014. October 2014 MRI scans showed disease in full remission. Confirmed this week with followup MRI and CT scans. There is hope out there for even the worst situations. It takes a site like this to help people out. And then it takes the patient and support group to get the correct treatment done. Fight to get what you need and deserve.
I hate to lose (Wrath of Khan). Never give up (The untouchables).
Paul the Herceptive Positive Equalizer

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

We need you as an Equalizer Paul! Wonderful news on Nina! Your tireless efforts are beyond laudable.

I have no doubt Herceptin has given me the life I would have missed! My Onc was celebrating with me last month my near 10 year survival---he grinned, shook his head, and said, "You had one nasty cancer."

For me: Herceptin 1
Nasty Cancer 0

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

In 2005, I knew of Slamon, but the team at Genentech working on this are past co-workers in some cases. I knew about Herceptin in 1992 (prior to most others) and worked on a diagnostic in 1985 (which makes me old). It took my mother at Christmas 2000 and will not take any more of the people I know.
I am a pharmaceutical consultant on making drugs, but also helped Nina pass her RN and Clinical trial exams. I guess you could call me as close to an expert on certain issues as there is. I had someone ask about autoimmune disease work, but it has not hit home for me in a while. I understand physiology, drug metabology, regulatory, and manufacturing in detail. It is my goal to help as many people as I can, because I can. HER+ just makes me mad as it got personal. It is up to each of you to get angry that you were chosen, for no special reason, to get this disease. The why's are not understood at this point, only the pain and suffering. It is up to everyone on this site to change the why's into "Why nots?"

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Pink, my Onc used similar words and said I was very lucky indeed, as I head to the ten year mark next summer I remember his words and feel very thankful.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

I'm thankful for everyone who genuinely benefitted from treatment.

At the same time, the blanket application of the drug for early stage HER2 positive bc limits our ability as individuals to evaluate with accuracy which of us actually benefitted and which did not, or why.

Today, after 12 years, the truth is that not receiving the drug made zero difference for me, AND we have not learned anything at all about which of us are not likely to benefit from receiving such an expensive drug, and at the same time we are encouraging some to rely upon it while they are progressing. We have not determined which patients would benefit from the use of this drug without chemotherapy, such as possibly many or most early stage patients.

The cup is both half full AND half empty; better than 10 years ago (and that IS good news), but with a long way to go to be as effective as we like to believe it is on an individual basis.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Maybe Herceptin is like a seatbelt in a car: You never know if it benefited a particular case, and it will not save everyone. It is clear that those populations that are not able to get Herceptin, now or in the past, may provide a potential comparison group. Without Herceptin, the death rate is quite high, where it drops significantly with Herceptin. Whether you believe the drug helped a specific individual may not be a good reason to say it is great for all. I know my wife Nina is alive due to the drug as all other treatments have not shown the ability to help Brain/spine HER+ involvement. I am glad for success in your case without the drug, but hope that you do not feel that there is no benefit in the drug.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

I am genuinely grateful for those who benefitted from the drugs, because they do improve the picture for a meaningful number of people -- including a fair number who only receive brief or intermittent benefit.

But because the blanket use of the therapies still does delay the pursuit of better treatment for others while encouraging false hope, and

Because overall there is such a huge cost in continuing to support the blanket use of drug(s) that provide no benefit for some, there are good reasons for stubbornly pointing out those realities, even though it means going against the tide. That cost would be better spent finding other solutions.

I'm glad I refused the drug personally, because it forces a somewhat more realistic viewpoint. Otherwise I too would have been counted as one of those who was "rescued" by the drug.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

these study results are a real world response to people who are cynical about "big pharma" only interested in making money Where would we be with out Dr Slamon and the developers of this drug.
I recall my surgeon saying "your Cancer might be small but it's very aggressive" and she proceeded to tell me my good fortune about Herceptin being available for me
It has been 7 years
Keep the faith

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Medicine is called the "Art and Sciences" for a very strong reason.
Give consideration to the fact that we as human beings are so different, DNA, genetics, etc. A slight chemical difference can make all the difference in a patient response to a drug.
We all have our belief system. I think it is safe to say that early dx. is a plus and can make a huge difference (again to some )
but for the majority it is an advantage for early detection.
We also need to educate our daughters and young women to be aware and take the necessary health precautions to assist them to have a healthy life. It is so upsetting to hear, a women who is well past the age of 50 say she never had a mamo. Often hearing they are afraid. That is very sad to hear. Fear of the unknown can and does cripple some. That makes a profound statement to women to take the best care possible of themselves.
There is no doubt that Herceptin was the break thru drug of the decade. Many had to fight to have it (early stagers) that for me was far more upsetting. A person should have the right to be treated as they make the adult choice for themselves. The FDA took way to long to establish a standard of practice for early stagers. I will never forget Dr. Salmon frustration when we met. He was point on that ALL her2 patience should have herceptin. This coming from a man with his credentials speaks volumes. He is cutting edge and way ahead of the pack. But, as any great leader he moved forward. For those who may have not needed herceptin (and may not ever know) God Bless them. For those who did not have Herceptin and did not progress, God Bless them. For the most part this is what we did know. Her2 was a dead sentence for most. We are now seeing for the first time in a decade that tide has changed.....and it is due to herceptin.
We are not seeing the progression of this ugly nasty life sucking disease taking many of us who were dx. early and had treatment and those who were dx. later, living 12 years and more during herceptin treatment.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

My oncologist referred to Herceptin as the "silver bullet" for treating my cancer. At the time I had no idea how fortunate I was to have access to this drug. I am grateful for all the research that continues to be done and feel blessed to know that should Herceptin stop working for me, I have other options available and more becoming available.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

This is an interesting and informative discussion. Thanks to all.

I'd like to point out that early detection of breast cancer does not actually improve overall survival. I know that goes against common sense, but it's a fact. The small drop in death rates from breast cancer in recent years is from better treatments, not from "catching it early." In less-developed countries, breast cancer is a leading cause of death. I suspect that the disparity is not so much due to the lack of mammograms as to the weakness in the health care systems in general (not to mention misogyny/undervaluing girls and women.)

Alaska Angel rightly questions the reflexive, blanket use of a drug that is never effective for some patients (for example, our beloved, dear departed Mandamoo) and becomes ineffective for many others. She says the money spent on that one-size-fits-all approach might be better spent otherwise. That goes double (at least!) for routine mammography. Billions are spent on it, yet there is no demonstrable benefit. There is also no evidence that routine breast self exams save lives.

Mammography, ultrasound, and MRI are necessary and essential for diagnosis of symptoms that might indicate that a person has breast cancer. That is a very different proposition from "let's screen everyone whether they're symptomatic or not." The main outcome of early detection is the opportunity to boast of five-year survival rates that look pretty great. Yet overall survival hasn't budged much. If you find it early you just have more years of knowing you have cancer, and being a cancer patient (and, hopefully, getting to NED and staying there.)

We are, indeed, lucky to have Herceptin and other targeted treatments for HER-2+ breast cancer. But don't fall too far down the "early detection" hole. After all, finding it "early" still means you have cancer. Chrissy was first diagnosed and treated at Stage 0. Yet her cancer metastasized, and she died. It happens.

Alaska Angel makes a great point about Herceptin that can be applied to all current cancer treatment protocols. There is no way to know if a particular person was "saved" by her specific cancer treatment. If she's alive, it's not unreasonable to assume the slash/burn/poison worked. But some cancers are slow-growing and indolent, and never become deadly. A good example is prostate cancer. Virtually all men who live into their 90s have prostate cancer, yet most of them die "with" it and not "of" it. That's true of some breast cancers. (Not HER-2+, but some other types.) Some are deadly no matter what, some are curable, and some never become deadly. We don't have a great way to tell which is which.

Substantially more research and attention should be going into preventing or curing metastatic cancer. That's what kills, and there's no known cure. All our expensive new treatments do appear to prolong survival for some people, but there's still no cure and, as the recent results published for Kadcyla, some brutally expensive new drugs are really no better than the old ones.

With cancer, an ounce of prevention is worth about a ton of cure. Lung cancer is virtually incurable. But lung cancer rates dropped substantially as smoking rates declined. Stomach cancer used to be widespread. With the advent of refrigeration and food preservatives, it's now very rare in developed countries. I'm very happy about the HPV vaccine, and hope it becomes ubiquitous.

Breast cancer doesn't seem to be caused by a specific virus. My money is on environmental pollutants and endocrine disruptors. The "vaccines" that are being studied train the body's immune system to go after the cancer cells in some way.

If we're going to spend billions of dollars on breast cancer, cleaning up toxic waste, developing clean energy, and finding safe alternatives to pesticides, herbicides, plastics, and other industrial chemicals (and ways to neutralize the ones we have dumped into the environment) appear to be better uses of the money. Increasing the budget of the NCI would be a fabulous place to start.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Very Interesting indeed....I do believe that early detection is a true benefit and does save lives. What patient dx want to hear they are stage 4? The horse is out of the barn and running at stage 4 and it is a different course of fighting the disease. That is fact.

Please see below link from Jama.

http://jama.jamanetwork.com/article....icleid=1883018

Chrisy: She was dx. in 2002 and did not have chemo or Herceptin. I don't believe that the test for Her2 was being done at that time as standard of care. I stand corrected if it was. Trials were still being performed.
Case in point: So many women were dx. early back then and NOT treated for HER2 as they are now. Chrisy was one.
She had mastectomy and was told she had a clean sentinal node. Again, back then the thought was if the node was negative you were home free. The cancer cells did not invade into the system. Well, we know now that is not true. Had Chrisy be dx. with Her2 and treated with Herceptin maybe (a strong maybe) as she was early stage she might have had a totally different outcome. Yes, we will never know for sure. But we do know that many women after Chrisy were dx. as she was and Her2 dx. and treated and they have NOT recurred. So are we saying that early detection holds little or no value?
Are we saying that because Herceptin is not 100% perfect, we should not have treatment since it doesn't serve all we should think about not having treatment?
That when a women is dx. with Stage 1 we just say, "well I don't know if Herceptin and the treatment will 100% work for me, so therefore, I am taking a pass and not electing to have that treatment, which is now standard of care. Okay, if that is your individual choice then I respect it. But to also blanket and say that early detection earns no merit is a heavy statement. I also have to say that most if not all oncologist wish that every patient they administer care to were stage 1 and not stage 4.

Back to Chrisy, she was dx. stage IV in 2004 with extensive liver mets. Fair to say that was the history of Her2 to return and most often in a 2 year time line. Chrisy Began treatment with TCH and gained a complete response. In 2007 she had recurrence. The dr's. certainly don't know why the treatment stopped benefiting her. Yet many others remained NED. We do know this - that thousands of lives were saved due to early treatment of Herceptin. Chrisy is case in point. Here she is in 2007 another 5 years of NED I think it is safe to say that the treatment did work for the five years.

For our new members who are dx. and have been encouraged by their oncologist that having an early dx. is a great advantage, it is certainly without merit to say that is not an accurate statement. I believe it to be an extremely discouraging statement to say that early detection does hold strong value to the life and quality of the patient.

Most important, each year new drugs, new procedures, new trails are being presented. If our good dr. had the attitude that early detection did not hold strong value it would be a sad state of affairs to the cancer patients.

In the United States:

• Breast cancer is the most common cancer among American women after skin cancer.
• 231,840 new cases of invasive breast cancer will be diagnosed in women in 2015.
• 62,570 new cases of breast carcinoma in situ (non-invasive, has not invaded nearby tissue), including ductal carcinoma in situ and lobular carcinoma in situ.
• 40,290 women will die from breast cancer.
• 2,350 new cases of breast cancer will be diagnosed in men.
• 440 men will die from breast cancer.
• The five-year relative survival rate for female invasive breast cancer patients has improved from 75 percent in the mid-1970s to 90 percent today.
• The five-year relative survival rate for women diagnosed with localized breast cancer (cancer that hasn’t spread to lymph nodes or outside the breast) is 98.5 percent. In cancer that has spread to nearby lymph nodes (regional stage) or to distant lymph nodes or organs (distant stage), the survival rate falls to 84 percent or 24 percent, respectively.
• There are more than 2.8 million breast cancer survivors in the U.S., including women still being treated and those who have completed treatment.
  According to the American Cancer Society, Cancer Facts & Figures 2015

Cancer of any kind is best detected early - and we have an oblation to ourselves and family to maintain a yearly care system of our health. People who wait until systematic to see their doctors is not wise. Be it breast or your teeth.



Thought: What if Dr. Dennis Slamon felt that why bother researching Herceptin unless it worked for all? or any thought other than researching a drug for Her2 breast cancer. Or he felt, well - it only saves some not all, so why take it at all since we just don't know who will have the positive results. Let's not offer herceptin until the trials show every patient is 100% NED.

While I do agree that money should be spent on prevention tell it to the greedy corporations who pollute our world and do not want to take accountability for their actions. Why, because it is all about their profit center.
Governments and environmental agencies have to track them down, take them to court and spend millions of additional dollars in court fees. While you are spending years in court, thousands upon thousands of people are dying from cancer related disease from the environment. While the thought is accurate that our environment needs to be addressed, in the meantime we are being attacked by companies who continue to pollute our earth. It is a double whammy, we have to address the patients who are dx. and fighting for their lives.

I can't jam my head and heart with that those big corporations who damage our earth when I was dx. with breast cancer. My first thought was to survive and find out what my choices were.

This is a individual choice of treatment. I venture to bet that if we could take a poll among the women who are dx. with Her2 breast cancer how many have made the choice to pass on the standard of care? How many of our members who back in the day were told they were Her2 stage 1, and herceptin was not available since it was not approved by FDA and then within 2 years recurred as a stage 4. Would they have chosen to have treatment with herceptin if offered? How many of those treated would have become NED?

This is a compelling and truly interesting discussion.
But I cannot believe that a blanket overall statement that early detection does not improve the dx and treatment of a women with early stage cancer is something to take the bank.
I am not seeing it that way.

We have so many new members coming to the site who are terrified with their dx. I think we all remember the day our doctor told us we have breast cancer. The fear and terror that runs down your spine. To think that their is no advantage to early detection and treatment (if the patient has chosen to have treatment) is a dismal give up attitude. You have cancer be it stage 1 or 4 - it is the same thing.
I have to repute and say not so. We have way too many sisters stage 4 on this site surviving for years
and doing so NED. What are the possibles to those who are dx. stage 1?

We do know that the landscape of a Her2 dx. was changed forever with herceptin. Dr. Salmon I am sure wanted to know who is guaranteed to have positive results. Hopefully his next gift to us will be the ability to determine who herceptin works for and who doesn't.


jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Dear Jean,

I had no intention of starting a fight. You make some good points. However, there are studies to back up what I said, and I'm not being defeatist. Please re-read what I said. You're putting words in my mouth.

The study that started this thread said Herceptin improves ten-year survival to 84% from 75%. That's a big improvement, and it is right to celebrate it. But it's not a cure. In that ten-year period, 16% still died. And the article doesn't give figures for overall survival.

Symptoms can arise at any stage, and if they do then we have great tools for diagnosing and treating. You make it sound like you think not getting annual mammograms means you won't know you have breast cancer until it metastasizes. That's not the case. On the other hand, many women with HER-2+ bc are metastatic at diagnosis, even with annual mammograms. A friend of mine turned up at Stage IV one month after a "clean" mammogram.

I'm advocating for prevention and cure, and for a rational allocation of resources. That's all.

Love and peace to all,
Amy

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

The confusion is understandable, in part because it becomes less of a factual discussion and more of an emotional one.

Unfortunately, it is too easy to generalize about the effectiveness of trastuzumab due to the lack of scientifically based trials to demonstrate who benefits from the addition of chemotherapy and who does not.

Drug development customarily is done through testing a therapy upon a specific population, using specific characteristics and parameters for what demonstrates effectiveness and what does not. It then applies only to the specific population that had the specified characteristics required for the trial.

The original trials primarily were specifically designed not to include early stage HER2 bc patients with tumors under 2 cm or patients with negative nodes, and included the requirement for those patients who did qualify with those characteristics to receive trastuzumab AND chemotherapy.

Applying the results of those trials to the group of patients who were not included in the clinical trial and who were early stage then led to the unfortunate and UNPROVEN general practice of combining chemotherapy with trastuzumab.

There is uncertainty as to what extent the addition of chemotherapy is merited because of the lack of proof based on the combination therapy used in the first place as part of the clinical trials used to demonstrate "the effectiveness of trastuzumab".

There are those whose cancer simply does not respond to trastuzumab plus chemo. For that group, their chance to have some other form of therapy that IS effective for them sooner is thus delayed and damaged by the use of trastuzumab plus chemo.

Add to that the number of patients whose cancer remains in remission without trastuzumab but with chemotherapy.

Add to that the unidentified number of patients whose cancer would remain in remission without trastuzumab but who genuinely may have benefitted instead from some other treatment leading to menopause other than chemopause, such as other methods of ovarian ablation.

As long as we have infinite amounts of drugs and money to fund all the cost-intensive treatments and all the testing involved and huge loss of productivity, we don't do the homework to find out who benefits and who does not from which therapies. It is emotionally appealing, but poor use of resources.

We continue to apply blanket therapy to the broad group of early stage patients at great personal and general cost that would be better spent on patients that have been scientifically proven to benefit.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Amy,
I am not putting words in your mouth, nor am I starting a fight.
I am not in that frame at all.
When an article such as this one comes out with a ten year survival to 84% that is cause for celebration. No it is not a cure, no one said it was. To place a label it is not a cure is not fair to the report. I believe we all want a cure. Right?

You made a strong stand by saying, "I'd like to point out that early detection of breast cancer does not actually improve overall survival." I don't agree and that is what the forum is about.

You also wrote "not from "catching it early." But the ACS states,
The five-year relative survival rate for women diagnosed with localized breast cancer (cancer that hasn’t spread to lymph nodes or outside the breast) is 98.5 percent. (early stage).

I never wrote that not getting mammograms means you won't know you have breast cancer. I wrote that we have an obligation to ourselves, family and loved ones to take care of our health, which means yearly check ups...and that goes for all types of cancer.
Colon cancer, ovarian etc. Women (and men) need to have health maintenance. We don't know the numbers of how many women who have mammo's are told all is clear and then later to hear that they are dx. Yes, this happens, but it sounds odd that because there are false reports, does that mean we should drop the mammograms? Nothing in this world is perfected just yet.
My mammogam found a small 6MM cancer, I and many many other women are dx. with small early stage cancers. Maybe we should poll our forum and ask how many of us were dx. early via mammograms? That would certainly show some stats.
I am responding to the post to offer the other point of view that early stage dx. is a strong preference if one has to be dx.
We don't know who will advance and who does not advance.
Going back 40 and 50 years ago women did not have mammograms available. If we pull the stats from 50 years ago how many women died from breast cancer alone?
We have made extreme advances in technology and medicine.
Are we there yet? no sadly.
When reading your statement it is flavored with the feeling that early stage dx. did not have merit as you wrote early detection does not actually improve overall survival. I disagree and wrote what I wrote....do not take it on a personal level against you or a fight.
My thoughts are different than yours.
That is the essence of the site. To share thoughts, reports and promote support to all who are fighting the disease.
Sorry if you took my response as a fight.
Jean
_______________________________

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

I agree that a trial for early stage (which I believe is being conducted) would reveal some new data for us.

There is a trial for early stage bc without chemo/ just herceptin.

Jean

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

I just want to add that in my "neighborhood" in 1999, testing for HER2 WAS standard. Mine was determined by the IHC rather than newer FISH method.

There was a thread here many years ago exactly on the topic of HOW members' cancers were detected. There was a great number who found it themselves after a fairly recent mammogram. In my case I found a "lump" just three months after a clean mammo report which was accompanied by a letter warning me that I had dense breasts and should not forget to do self checks as often as I could.

I will go ahead and say in my case I attribute my long remission and continued life to Herceptin. But I am not everybody, and since I got Herceptin AFTER I was diagnosed stage IV, will point to its addition to treatment and long use of Herceptin alone as the trump card.

It pains me that more members here and women I know off this board did not get a better result with their treatment that included Herceptin or the other newer targeted treatments.

Better statistics are coming and just take so darned long to develop. In the meantime, most newly diagnosed would rather be safe than sorry. Or at least feel they are "safer."

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Steph,
Thank you for pointing out the attributing factor of women with dense breasts, which places another issue all together. Like you, I had he same issues back in 90's. With unknown suspicious lumps in the breast.

My heart aches for those that have not had the results as you have experienced. For sure Herceptin took a huge bite out of this nasty Her2 and I am happy at the same time for that progress.

Herceptin has opened my eyes to see the glass half full. When I was dx. I was so frightened (natural reaction) I remember thinking Her2 OMG this is the worst news. Then doing my search I learned about Herceptin. Had to fight for it. Did it make the difference? I will never know for 100% but Dr. Salmon convinced me that all women should be treated.
With those feelings in place, I admit I am sensitive to the newly dx. women (like many others here) who come onto the site and are seeking information.
While we know Herceptin is not a fit for all, I have to agree with you that "rather be safe than sorry."
I am hoping the research will bring forth more trails for all the unknown moving parts to this disease.
In the meantime doing what we can to remain healthy and strong.
Jean

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Reassurance is a comfort at time of diagnosis. Sometimes we would rather be reassured than pursue a higher degree of truth upon which to base our trust.

What is cruel about that is the professional endorsement of practices based in part upon of the failure to demonstrate proof of efficacy of therapies recommended, which plays upon our hopes, and results in the diversion of much of the limited resources.

It may sound hard-hearted because we do care about each other's feelings and like to reassure each other, but do we want to focus our limited resources on reassurance regardless of efficacy and cost, or do we want to focus them upon efficacy?

Should we continue to encourage the professional practice of shotgun application of combined therapies through the failure to demonstrate proof of efficacy by clinical trial? Have we seen clinical trial proof offered by professional direction, demonstrating whether or not there are early stage patients who maintain remission through the application of trastuzumab when used as a single agent? Or are we continuing to see earlier and earlier stage patients still being "professionally" offered the shotgun combined therapies?

As mentioned, there is a trial of the use of trastuzumab without chemotherapy. Will it provide proof of efficacy for most early stage patients, or will it provide proof only for elderly patients (who do not require chemo in addition as one method to bring about the hormonal changes of menopause)?

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

AA and Mtn.
Why not address your statements to Dr Salmon and have him respond. I think he would be the best person to respond to your positions regarding herceptin and mammograms.
I have his email.....let me know.
I would truly like to read his response.
I admit, I was reassured by Dr. Salmon that Her2 TCH was the correct treatment for me.
His exact words...."you saved your life by NOT listening to the dr. in New York, as they have missed the boat." This was in 2006. Dr. Salmon's trial of TCH was not published at this point when I consulted with him. I do not remember him saying it would work for everyone of course. But the trail showed impressive and compelling results. For me I know it is not reasonable to think a cure would work 100% for every single person. Our chemical and biological make up as humans is vast. Similar to when antibiotics work for some and not for others. There are thousands of vaccines and drugs that work for a major group but there are always a sub group that does not benefit.

Limited resources, by who standards? Dr. Salmon was able to obtain the funding for his research. Those monies were donated by organizations that believed in his research. Who expected that herceptin would work for 100% of the population? This was based on the facts that Dr. Salmon presented for his research, not on reassurance. The only reassurance Dr. Salmon offered was his strong educated opinion as a researcher to tell me that TCH was the cutting edge and to certainly have the treatment. Good enough for me. I can honestly say I knew going in there was always the risk, and also the chance I could recur in a short time and maybe in the future. I could also die of something else.

I think this entire discussion is valid since it comes up often on the site.
If you are not comfortable to reach out to him I will be happy to send him your thread and ask him to respond with your permission since it is your thread.
I am just tried of the same old beating up the what if's of herceptin and what the research did not do. But it is valid like I said, so why not hear why the resources are being wasted from the mouth of the research man himself?

This life as we know it today right now offers us no guarantees.
I don't believe in Santa, the tooth fairy or the Easter bunny, but I do believe in Dr. Salmon. I am not a emotional wreck who requires reassurance. I wanted facts to make a health decision based on what we do know. We knew herceptin was working for some.

I still take the position that when a women is dx. those early days regardless of stage do need reassurances. By that I mean, not pie in the sky reassurances, of course telling the accurate truth that herceptin is a game changer and a wonderful life saving drug. We know it doesn't offer a cure or is 100% promise.

I focus on the many who have had positive results, certainly not turning a blind eye to the facts. Again, medicine is also an Art not just a science.
Just like those arrogant doctors who become annoyed with a woman who asks too may questions or are too upset to suit him. He dismisses her, as he can't or won't take the time she may need, because she is upset. How often have we read this on this forum? That is a dr. who is sour and more than likely could use a lesson in bed side manners. Or maybe he just has too many sour grapes under his belt.

I am sorry but it sounds like sour grapes to me.
Again, lets put it to the researcher and see what he has to say about the research plus costs and effectiveness.

Jean











Jean

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

http://video.pbs.org/video/2365362396/

Mtn. posted this link to the video.
These talented people have hope and are using drug that do work for some and not others. Are they wasting money, time for those that it doesn't work for?
I look forward to viewing this when it airs.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

I'm looking forward to seeing the upcoming documentary too.

It is meaningful to provide encouragement for those who just want to be told the treatment will work (whether it actually will for them personally or not), because treatment has improved for many HER2 positive patients.

But maybe there is room for some genuine practical support of the group of people who have done that same extensive, expensive and difficult treatment with no personal benefit at all? What do we say to help improve their situation? "It really is too bad.... that treatment is a miracle for some like us, you know.... even though many early stage patients never needed it at all, it is a great idea to continue to throw their money and time away.... it never did work for everyone... maybe someone will figure it out someday, somehow.... it is okay, you did your best... maybe you'll be lucky enough to find the right combination in time... best of luck... stay in touch?"

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

As a HER2+++ 1.9 cm tumor patient who did chemotherapy, rads, and a very short run of tamoxifen and who remains NED at 12 years out, I wonder why there have been no clinical trials offered to me and those like me, to see if our tumors and genetics can help to identify any reasons that would then support a way to identify other patients who don't benefit from trastuzumab.

Likewise, I wonder why no doctors have created any trials for those who received a recommendation to do chemo and trastuzumab but have opted to do trastuzumab without chemo and who have remained NED, to review their tumor characteristics and genetics to see if that would provide actual proof, as opposed to failing to seek and utilize any information from such patients.

We are out there. I have never seen any indication that anyone ever suggested or tried to do it, in genuine practical support of those who do not get any benefit from these difficult and expensive drugs + all the support testing and medications they require.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Herceptin saved my life and is the reason I'm still alive. In 1999 I was diagnosed with HER2+++ BC but they called it DCIS and said Herceptin was not necessary even though I wanted it. 4+ years later I was diagnosed with metastatic bc HER2+++, it looked very grim. I was sure I was a goner but with taxol and Herceptin for 6 months then Herceptin and Femara for 6 more years, I'm here today so I can say confidently that I proved that for me, Herceptin made the difference - without the Herceptin (despite a mastectomy that I was told was over the top), my cancer came back, with it, I'm here today.
I have had heart problems and damaged lung but both due to radiation and not the Herceptin (my every 3 month sonograms for the left ventrigal were always very good). So I lift a glass to Herceptin and thank Dr. Slamon for continuing despite losing his financing from Genetech and proving to Genetech and the world that Herceptin is a great drug and profitable. I hope he never has to beg for research money again. Thank you Dr. Slamon and the Tartikoffs. Watch the movie "Living Proof" about him and Herceptin, it will bring tears to your eyes.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

I think it is important to understand drug resistance when it comes to Herceptin and its sister drugs. The reason why these drugs stop working for many HER2+patients ie on HER2+ tumors or tumor cells is that when the drugs block off pathways that the tumor cells initially use, the CST tumor cells can mutate to form daughter cancer cells that use other pathways. Thus they get around the "blockades" created by these drugs.

Perjeta blocks different pathway/s to herceptin, so if both drugs are used at once, the chances are higher of killing off all the cells before the CSC manage to mutate into something that uses yet another pathway.

The researchers of one study into CSCs and metastatic processes recommend that eating brassica, tumeric, soy, and green tea all help knock out relevant pathways and interfere with tumor development too. If they can get a big enough bunch of these type of drugs together, blocking enough of the main pathways in one go, and the resistance issue is going to be a lot less of an issue, and blanket treatment for all HER2+patients might be so clearly effective that the equation becomes simple.

In time there may be vaccines to fix the tumor suppressors that stop working and that might be the treatment of the future. But in the meantime, I am very grateful to have been treated with Herceptin which my onc said has changed my 5yr survival chances from 45%(with surgery only) to 92%

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

I believe that many of the people involved in bringing trastuzumab to us are to be admired and appreciated for their initiative and hard work.

To the degree that they have no control over the unfortunate blanket application for the various patients for whom the the mandated combination of drugs do not provide benefit and yet is the only option authorized, they should not be blamed.

The firsthand, anecdotal information and explanations I think are very helpful for anyone to consider. That includes my own anecdote.

Since the original trials led to blanket use of therapies, and since I did not have trastuzumab and yet I remain NED, it is reasonable to continue to question just exactly what therapy or combination of therapies did the trick for any of us. Can we know for absolute certain which therapy given made the difference for each person? Is it proof?

For some, it is possible that becoming menopausal through the use of the required addition of chemotherapy is what then slowed their rate of metabolism and would be enough without the other drugs.

Since I had a very aggressive, strongly HER2 positive 1.9 cm tumor (grade 3) and yet I never had any trastuzumab and continue to remain NED at 12 years out, what we DO know is that trastuzumab is not the reason that I remain NED.

It also especially poor practice to continue to pressure patients and the doctors treating early stage patients to push their patients to include chemo in order to receive trastuzumab, since the trials done for this group were done largely only for those who had positive nodes or tumors at least 2 cm in size. We cannot say who benefits from which therapies.

If it is true that becoming menopausal is adequate treatment for some to be able to remain NED, there are less invasive ways to accomplish that, which should be offered as alternatives instead of pushing chemo as the ONLY way to do it (in combination with trastuzumab).

It is true that chemo MAY also reduce the number of cancer cells when the type of cancer cells one has happen to be very responsive to the particular chemotherapy being given. At the same time, we do not know what mechanisms of the immune system are being suppressed by the chemo that otherwise could provide significant benefit to patients for whom other therapies (such as trastuzumab) when used alone would have been more effective. For early stage patients, this may be especially true in that therapies are often more successful when the tumor burden is less -- which is the case with early stage patients. We cannot know because the evidence was not obtained for this group.

These is is all pertinent information that should be provided to early stage patients. Instead the sledgehammer approach continues for this group, even though these patients have not had the opportunity to base the conclusions on carefully trialed evidence.

I do understand that trials cost a lot of money, and that the financial bias against providing money for any trial for this group exists, and that trial results could reduce the present policy of over-use of very expensive drugs. The bias is significant because the drugs are so expensive and revenues from blanket application are not insignificant. Who would fund such trials just because that is a more ethical, less harmful thing to do?

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Hi Amy, you say that early detection does not affect survival rates. This is something I keep hearing quoted. It interests me because it is counter-intuitive, and I decided I would like to explore it further in order to understand the issue properly.

When I did a search on the research into correlations or the lack of them between early detection of breast cancer and survival rates, what I found was a study published in 2007/8 called "An overview of prognostic factors for long-term survivors of breast cancer" (A review of the PubMed database from 1995 to 2006, also using data from long-standing Eindhoven Cancer Registry summarizing available knowledge on the determinants of survival 10 years or more after breast cancer diagnosis.) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2217620/

"Trials on population screening have reported 21–29% reduction in BC mortality for women invited for screening within 14–16 years of follow-up [19, 97]. Screening identified tumours at an early stage consequently, survival improved [98, 99]"

"Conclusions Effects of traditional prognostic factors persist in the long term and more recent factors need further follow-up. The prognosis for breast cancer patients who have survived at least 10 years is favourable and increases over time. Improved long-term survival can be achieved by earlier detection, more effective modern therapy and healthier lifestyle."

This is different to the information you have found. Maybe these different research projects deal with different populations (this one only looks at woman who have survived 10years post diagnosis). Maybe they are talking about statistical significance not being reached. Maybe the research design affects the results. Or maybe there are changes happening with time so what is true in 2007 is not true at the time of the research you are referring to (which may be earlier or later).

Would you mind giving the links to the research that says that early detection makes no difference to survival, so we can start to look together at these different bodies of evidence and discuss them? I am not trying to tell you that you are wrong, just inviting you to be part of a joint process to help get to the bottom of this discrepency.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

I sympathise with the concern about having to have chemo too if you want trastuzumab, and the principle of a blanket treatment for all that is not fine-tuned to the best needs of the individual patient.

I think part of the reason for this is that the only treatment regimes the oncologists can offer with any sort of confidence are the ones that have been tested out on hundreds of people over quite a few years ie in large trials. If the oncologist changes any part of the regime from what was used in the trial, they are immediately using a totally untried treatment which could be either useless or dangerous. When they stick to what has been shown to be effective for someone like the patient in question, they can know a lot more about what side effects to expect, what tests to administer etc. They know the chances of it working to get rid of the cancer in question. My onc says that reducing dosage of anticancer drugs to less than 86% of the recommended protocol significantly reduces effectiveness.

The other part of the problem is that ethics committees who have to approve research trials (I understand the FDA uses this process though maybe they call them something different)generally will not permit any trial to start unless it offers all participants a good proven treatment. So it would have been initially hard for researchers to get approval for a herceptin-only treatment, until the drug becomes so well recognised as a good proven treatment on its own for patients with a particular kind/size/etc of tumor. In their wish to protect us the watchdogs slow down the approval of the sort of treatment you advocate.

The more different trials are done of different combinations, and the more the researchers manage to trial different protocols/regimes of drugs etc, the more options they can use with reasonable confidence they will work.
Carboplatin and Taxotere were used together with Herceptin in the big trial that finally proved there was a good chemo alternative to the heart-damaging andriamycin type drugs. Those particular chemo drugs were chosen because there were helpful interactions between them and herceptin and the HER2+ tumor that made the combination more effective. They were not just picked at random.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Debbie,
Thank you, well said.
We are doing all that is possible at this time.
This is a complex disease and I strongly doubt that the research is being ignored as to the why's.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Debbie,

The report went on to say that “…while the incidence of early-stage breast cancer increased significantly in the period between 1976 and 2008,

I was dx. early sage small tumor via mamogram.
For me and the others who were dx. early I see the beneift of the exam.

The report continues:

The incidence of late-stage disease decreased only slightly and the incidence of metastatic breast cancer did not change at all.1 More data continues...

Debbie - I would ask - was this group - their first exam?
Or had they been going on a yearly basis?

I had been having mammograms exams on a yearly basis. Having had dense breast it helped during those years to track any changes in the breast.

While I have to accept the report I still need more information on the groups that were early dx. and those that were later. Have lots of questions.

Thank you again Debbie,
Jean

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

Just to clear up any misunderstanding:
I also would have enjoyed having everyone have a positive results with herceptin. The flavor of the thread was reading as if the research community had abandoned those cancer patients who did not have positive response. Which is certainly not the case.

Or the research is not doing their job since some failed on Herpcetin and they should know why and why now.

I am looking forward to the documentary which will hopefully offer some clarity to the debate over the issue. Hopeing it will deliver information on the research and how hard the medical industry is working to find a cure.

For those of you who were able to see Vice and the approach of the current treatment shown, new doors are opening, as soon as next year. Will that work for all of the cancer population?

This thread began with positive news and moved to another level.
So be it, but let's not forget the good progress. We have a long way to go indeed and we all want everyone to be treated with drugs that offer a positive results to all.

Re: early Christmas present--10 yr overall & bc specific survival results just publis
 

One negative and very likely factor/probability affecting the question regarding mammograms is that in wanting to "think positive" about this question, we also tend to want to disregard the knowledge that radiation itself to a degree is known to be a cause of cancer. To what exact degree the low level of radiation used for mammograms causes cells to malfunction is the question, but we can't entirely discount the likelihood by wishful thinking.

In addition, in reality we are subjecting both those who actually get breast cancer in their lifetime (is our guess at that at present 1 in 3 women???) as well as the 2/3 who never are formally diagnosed with it. Those who are diagnosed with it, logically, receive far more radiation over time than those never diagnosed with it.

So, in considering both the positives AND the negatives about current professional recommendations for mammogams, the question quite possibly would be, how many original occurrences plus recurrences are due to the steady/increased exposure to radiation, as opposed to how much benefit we get from detection by mammograms and other radiation exposures.

Two-thirds of those receiving mammograms are not diagnosed with bc in their lifetime and get essentially no benefit from having them (other than periodic reassurance by them, and any incidental diagnosis of other problems that a mammogram might expose).

A.A.