To all recently dx. and those who are visiting the site who are

[AlaskaAngel]

Jean,

The content of this thread was directed

"To all recently dx. and those who are visiting the site who are

early stage and wondering about their treatment choices and what decisions to make...."

and cited the article titled:

"Trastuzumab May Benefit Patients with Very Small & Low-Grade Breast Tumors"

That title conveys the impression that the use of trastuzumab alone may be of benefit for "Very Small & Low-Grade Breast Tumors". But shouldn't a HER2 website be willing to be a little more up front and truthful than that when trying to influence those who are "visiting the site" or who are " recently diagosed"?

The use of trastuzumab alone is not what the article is actually about. In reality the article is suggesting the use of chemotherapy with trastuzumab for small tumors. If you are not open to honest debate about the content of the article then perhaps it shouldn't be used to make your point.

AlaskaAngel

[Jean]

AA,
The Aurthor who wrote the article and spoke with the leading doctors in the article understands that at this time herceptin is not given alone but with chemo. Hence the title. It is just a know fact today - and for anyone who does not know...will certainly discover this in the body of the article.

Nor do I believe that the article is misleading to anyone.
As I have shared with you since this seems to be a position that you have a strong interest in, why not do some research to discover what trails and research is in the works.

My position on this board is to share articles which offer positive news for women who feel doomed after being dx. with her2 bc. As a woman who did experience a dx.
of a small aggressive tumor my presence on the board is to share with others so they do not feel isolated, alone, troubled and feel they have to live in fear of the disease.
While your raise questions regarding the misleading representaton of the article - the article itself informs the reader that the issue of herceptin treatment with outchemo is currently under great debate under the medical profession at this time.
I will not have an open honest debate about medical information that is currently under investagion. see below. we do not have the answers. But certainly need to have them, we all want them. Even the doctors in the article ponder this question.


Dr. Gonzalez-Angulo said that one open question is whether these patients will benefit from trastuzumab alone or whether they need trastuzumab plus chemotherapy.

Currently we just do not have the data - so how can one debate it...we need research and trials. But in the meantime great strides have been made and I believe that should be appreciated.

I believe the findings are showings clearly that small aggressive tumors require treatment, which is an improvement in treatment ...just back 5 yrs. these women would have been turned away. Hopefully we will see additonal improvement as science moves forward.


Author Information

SABCS Abstracts 701 and 702

Adjuvant systemic therapy with the anti-human epidermal growth factor receptor 2 (HER2) monoclonal antibody trastuzumab (Herceptin) should strongly be considered in early-stage breast-cancer patients with very small and low-grade HER2-positive tumors, researchers reported at the San Antonio Breast Cancer Symposium.
A US team came to that conclusion after finding that HER2 positivity is a powerful negative prognostic factor for patients with node-negative disease and tumors that are 1 cm or smaller. In addition, UK researchers found that HER2 positivity is associated with an increased risk of death due to breast cancer in patients with node-negative, histological Grade 1 or Grade 2 disease.
Together, the studies show that patients who are traditionally defined as low risk, but who are HER2-positive, have a poor prognosis. This is important because it tells us that HER2 status has a prognostic role even in low-risk tumors, said Angelo Di Leo, MD, PhD, Head of the Sandro Pitigliani Medical Oncology Unit and Chair of the Department of Oncology at the Hospital of Prato, Tuscany Cancer Institute, in Italy. Dr. Di Leo moderated the well-received, early-morning oral poster discussion of both studies.
Physicians need to consider offering these women Herceptin-based therapy in the adjuvant setting, said the senior investigator of the US team, Ana M. Gonzalez-Angulo, MD, MSc, Assistant Professor of Medicine
Current Guidelines

Current treatment guidelines do not recommend that trastuzumab be given to women with HER2-positive tumors smaller than 0.5 cm and suggest only that clinicians discuss trastuzumab treatment with women whose tumors are 0.5 to 1 cm in size. The reason, Dr. Gonzalez-Angulo explained, is because these women were largely excluded from the definitive trials confirming the benefit of the drug.
Five randomized, Phase III clinical trials reported significant improvement in disease-free and overall survival with trastuzumab administered in conjunction with adjuvant chemotherapy for early-stage HER2-positive breast cancer. However these studies included principally node-positive cases, and four trials excluded patients with tumors 1 cm or smaller that were node-negative

I will repeat I don't believe that any women who visits this thread will believe she has been fooled. The article speaks openly - If you disagree with the article and its title that is your choice and I suggested maybe you could help the site by doing some fact finding research to see why herceptin trials alone are not in the works. I am sure we all want to know.

I still stand that newly dx. women will find the reading
informative, enlightening and even uplifting.


Jean

[AlaskaAngel]

Thanks, Jean. I know we are each very sincere about providing information for others in the hope that they will understand and be able to access the best possible solution for their own situation. If they didn't know what the article was about at first, I think they do now.

A.A.

[karen z]

Jean's statement that "IT IS NOT THE SIZE OF YOUR TUMOR IT IS THE CHARACTER OF YOUR TUMOR" is certainly one of the main "take home" points of the most recent and major breast cancer conferences.
And while we are waiting for even more information to be gathered and more trials to be conducted, it would be tragic for us to turn our backs on what we DO know- for the time being (and that is all that we can know as mere mortals).

[Laurel]

Hey, Ladies, I gotta say that I wish that I had found a thread like this two years ago when I was confronted by a BC dx. I sincerely hope it helps others who are struggling with the decisions before them.

[AlaskaAngel]

Yes. At first "breast cancer" sounds like one disease, and it is confusing to find out that there are so many individual differences and no "best" answer or treatment, and that even the regimens that are considered "standard" don't come with any guarantee.

There are also differences in perspective that are partly based on the state of treatment at the time of diagnosis. Jean and I were diagnosed at different points. I was diagnosed 8 years ago and treated by a very popular and prominent onc in Seattle. At the time I would have been eligible for one of the trastuzumab trials, and although I knew nothing about it, I told my onc I was very interested in participating in clinical trials. He was a complete dud, and provided no information for me. When trastuzumab's success was announced eventually at one of the annual oncology conferences, those of us who had completed chemotherapy without it of course wanted to know how to apply it to our situation. Unfortunately, because the trastuzumab trials had excluded many of us who were node-negative and under 2 cm, the oncology experts were dead silent about us, as if we simply did not exist. We waited.... and waited.... and while we waited, time was passing.... after a long, long wait in silence, we heard that maybe, just maybe, even though we couldn't have trastuzumab at the same time as chemo, it might be okay if it was given within 6 months of completing chemo. This was ludicrous, given that the period of greatest risk for HER2s was considered to be "the first 2 years" after diagnosis.
I am NED at 8 years out from CAFx6 + rads and some tamoxifen, with no trastuzumab. I don't look at treatment options the same way that someone diagnosed more recently would. I have seen that the addition of trastuzumab happened only because a scattered few individual patients stepped forward against popular opinion and advice to be the first to receive it, and didn't stick with what was known at that time to "work" for.... some. From my perspective, that is what it takes to get better answers.
What we have still isn't working for many HER2's. There are still too many who think they will be among the lucky and then find out that the difficult treatment they had and thought was protective actually wasn't working for their individual breast cancer.

We all want the best for each other.

A.A.

[Jean]

Even when a lumpectomy is performed and then radiation some women have recurred..even when they did not have chemo/or addtional treatment.

The unfortuante part of this disease is that many if not most women suffer with the thought that the treatment no matter what they did - their cancer may return.

Herceptin does not work for everyone and we do not have the answers why their Her2 bc rejects it...could it be DNA, Her 3 pathway, our enzymes alone can play a very important role.

We all want answers and a cure...that is why I attempt to post to the newly dx. to push hard for new treatments...push hard and ask questions to the dr...ask what trials are being conducted and if they could fit into the trial, we must always question our dr. and push hard for answers when it doesen't feel right for us.

I had heard about a trial after my surgery being done which I could have fit into but my surgeon was not involved with the trail and there are plenty of politics going on in a hospital. When I asked him why he did not advise me, he simply said, "well it's not my trial."
That from a top surgeon, I was shocked to hear him say such a thing.

I think we are all very innocent almost like children when we are first dx. I learned fast to seek out cutting edge information and find out what if anything can or would help me.

You brought up a great idea of trials...I have been doing lots of checking in the different major learning hosptials the last few days. None that I have found at this point are conducting any trials of treatment with just herceptin. Doesn't mean it may not be out there I just have not found it.

As Bejuice just returned from a meeting with new research information that was very exciting. But it will take time to fine tune the treatment. It is so ever changing and then each person reacts differently.

It is a deeply complex issue.
Jean

[Becky]

Also, I need to add - I was one of those women who was only 3 months done with chemo when Herceptin became available. Initially, people like me who were done with chemo already were told we could get Herceptin if we were 6 months or less from our last chemo. Many of you on the board will remember (at least you will remember Angel) that I rushed like a NUT to get everything together to do it and then my onc (at the time) refused me so I had to rush to get it elsewhere. By the time I got my first infusion (5 weeks later), ASCO already changed the 6 month from last chemo to 12 months from last chemo. Many oncs at that time were giving it to their patients who were still in that 2 year window just for the rationale that Angel gave - the first 2 years, you are the most vulnerable to a recurrence. Oddly, my new onc gave me 5 extra every 3 week infusions because - since I started Herceptin at 9 months from surgery, that extra 5 (15 weeks) brought me just days past my 2 year from surgery date. My onc said - if insurance will pay for it , why not? I am protecting you through your weakest moments and I was on either Tamoxifen or Arimidex this whole time for an extra bang. Wow do I remember that time in Her2+ bc history. It was crazy. Trying to help people on the board get late Herceptin. It is nice those days are gone but it made many of us strong fighters - strong advocates for ourselves and others.

Secondly, I think it will be difficult to get trials for Herceptin alone (for small tumors, node negative) because I think many women will be afraid not to have the chemo too so there will not be enough women doing it - therefore the results may not be statistically significant. I think if they discover something that tells us that we are Herceptin responders - then those who test as responders would. Otherwise ...

['lizbeth]

Jean, Alaska Angel, and all,

I appreciate discussions like this with insight from your experience with treatments.

I spent 6 months researching how to get out of chemo while I waited for my reconstruction to heal. I think there is a large group of early stagers that would be willing to try Herceptin without chemo. My thought are it would be better to have them try Herceptin which would benefit 50% of them, then nothing.

And what if we combine several treatments other than chemo: Herceptin, Tykerb, GP2 peptide, MUC vaccine.

The bigger problem is cancer I always say is a disease chain. You and I have cancer, but we have different weak links in the chain.

Soon we need to transition from treating "breast" cancer or "prostate" cancer or 'Lung" cancer, to treating the underlying pathways.

We need to be able to say this is Her2, Her3, Her4 & MUC cancer and treat accordingly.

Well I personally love the idea of Herceptin without chemo for early stagers.

And I love the passionate discussions on the board.

And on a personal note: Jean, honestly, I don't know how I would have gotten through my Chemo without your support - my first oncologist wasn't the most supportive. You are the best!

[v-ness]

oh to have a crystal ball. i'd rather have chemo and herceptin and be alive to type about it than experiment with herceptin alone, later cursing my choice. v

[AlaskaAngel]

When there has been only one type of therapy applied for decades and it was chosen at a time of desperation with far less knowledge, and it becomes the "standard" of care that everything else has to be tied to and measured against, it is easy to fail to question whether or not that therapy itself -- or any of the support drugs administered in support of that therapy, such as steroids or blood stimulators, or the drugs used to treat side effects -- is actually causing recurrences. This is especially possible because we are using a therapy that is known to be randomly effective, so we never have a way of verifying its negative effects in terms of whether or not it is stimulating the growth of the cancer. It is quite possible that trastuzumab alone may work for some patients where trastuzumab plus chemotherapy would not.

In desperation we have accepted the consistently rather minimal track record of chemotherapy itself as a treatment for breast cancer. The majority of breast cancer patients do not have the choice of adding trastuzumab to their regimen.

Also, in terms of economics there are people who are not able to afford both chemotherapy and the monoclonal antibody and who would rather choose between the two if they have only so much money to spend, regardless of which choice they would like to make. Much of the discussion here has been based on the assumption that everyone has some form of financial access to whatever regimen is currently authorized, and for some patients that is not true. As it stands now, those patients are left to do entirely without. This includes patients in countries that are far less able to afford these extensive and expensive treatments. In behalf of those patients I see a ray of hope in the FinHer trials.

In actual care with early stage breast cancer patients, I would agree that there are a significant number who are choosing to forego the combination of chemotherapy and trastuzumab altogether because they are unable to access trastuzumab alone.

AlaskaAngel

[Jean]

Gee, I guess I see the glass half full....
I see all the lives that are being safed and all the women that are living longer who are stage 4.
We have made some very impressive strides. You wrote.....

When there has been only one type of therapy applied for decades and it was chosen at a time of desperation with far less knowledge, and it becomes the "standard" of care that everything else has to be tied to and measured against, it is easy to fail to question whether or not that therapy itself -- or any of the support drugs administered in support of that therapy, such as steroids or blood stimulators, or the drugs used to treat side effects -- is actually causing recurrences

I have to ask don't you think that therapy and treatments has changed in very strong leaps in the last decade alone? I lost two friends to this disese - one 26 yrs. ago, she was so young...they remove her breast, no radiaition at that time when the breat was removed the dr. felt he caught it all.and in a short 1.5 she had a recurrence. Then at this time she had chemo. I really believe now that she may have been her2 since it took her so fast. She was only 30 yrs. old. when dx.
So just having surgery and no radiaiton...she still recurred. My other dear friend at least lived another 10 yrs. after her dx. She also had surgery and no radiation.
Her cancer came back in the bones. Back 26 to 30 yrs.
ago, that was stanard of care.

I think as woman are dx. we are put in a extremely difficult situation. Dam if we do and dam if we don't.

Consider young teens who are dx. with Hodgkins disease. Decades ago they were not surviving, today
most are treated and cured...my son had a close friend
who was only 13 when dx. He went through chemo (my son and he attended an all boys school) the boys on his team all shaved their head in support of him. ) This boy now is a young man of 26 doing very well with NED.
I have to believe the chemo saved him. While it broke my heart to see him struggle through the treatments
and he lost an entire year of school....what other choice did his parents have? The same holds for us....we really don't have the time to dwell on the negative...we must be fighters in every shape and form. While none of us on this site want to have chemo - you must make rational decsions on the medical situation we are faced with.

We all on this board must maintain a strong degree of positive thoughts...and fight. If I didn't fight hard I would not have gotten herceptin. If Becky didn't run her legs off and fight for herceptin (and others) she would not have had herceptin. I guess the point I am making is when life give you lemons you make lemonade or pass on the lemonade and look for a sweet wine.

Life hands out unfair issues to people. My husbands
cousin who was only 52 yrs. had a severe headache one day at work, she fell over at her desk and went into a coma, she passed 24 hrs. later never to recover, she had a brain aneurysm. Unfair, no warning, no treatments for her.
Just a fast death.

I have to feel a certain amount of graitude that I at least have been given a fighting chance. I have to feel that many women on this board are also grateful and appreciate that science and the medical profession are doing the research and the best they can.

So many questions, so many decisons, the medical merits of one procedure over another.

There are children starving in third world countries, there are so many ills in the world. There are children
being rob of their right to be children. If we look at the plight of children in India...how they are sold off by family to work it is a crime. Poor countries around the world have had not only medical failings but protecting the healthy children is an issue.

There are many funded organizations trying to help the third world countries. It is a major feat. Cancer is not the only ill in the world to the poor countries.

We can only do our best. I don't mean this in a disrespectfull way, but we have many women on this site fighting for their lives each day, and taking chemo and some even on trial medicaiton. We need to be forward thinking and positve for them. No one has the answers to the all the ills of the world. One can only do a kindness and try to help in their own small way.
For some it is serving food in a homeless shelter, for others it is running miles in support of breast cancer,
everyone does their share in their own private way.

I honestly have never met one lady who was her2 who said she would not have treatment becasue of chemo.
I speak with large groups of women at the hospital and I have never heard that. I still visit the chemo ward and serve lunch and light snacks to the patients getting chemo. I do this because it is my way of paying back by helping others who are feeling frightened and being there knowing I had chemo/herceptin and I am doing well. I only hope it makes another feel stronger. While there may be women who are afraid to have chemo /and/herceptin I honestly have not heard women saying that on the chemo ward.

As I have said I always see the glass half full.
Jean

[Hopeful]

I honestly have never met one lady who was her2 who said she would not have treatment becasue of chemo.

Well, technically, we have never met, but you know me from the board here. I was not willing to do chemo, and my onc offered me a year of Herceptin without it, and actually had to convince me to do that (I had left sided bc, and was afraid the combination of Herceptin and rads would leave me with impaired cardiac function).

We do exist.

Hopeful

[Jean]

Hopeful,
It is wonderful that your doctor agreed to trt with just herceptin and your insurance covered it (?) for the majority - doctors include chemo.

It is encouraging to hear that some doctors will work with the patient especially when other health matters
have to be addressed in order to treat.

I want to express to all on the site new and old members, please do miss quote or mistake my position on the topic. I am not an advocate of chemo in the sense that if dx. with cancer you MUST have chemo. It is a choice that may have to be considered upon each person’s dx. When I post information regarding early stage dx. it is with my own personal experience of what I have been exposed to and continue to learn about.
My concern for new members who find our site is not to feel doomed. Also that chemo does not mean you will die from the cure.

As a support group my thoughts are to be supportive and encourage those who visit, not with a false sense of information....but with a positive side, for those fighting hard at other stages, my heart and soul will always support them. I also have to express I feel it is unworthy of me to express my concerns about the ills or side effects of chemo while so many of our sisters are fighting so hard and do not have a choice to take chemo, they must. My position is to support all on the board at any stage. But I do not have the experience of sharing information of a later stage - so therefore I just offer my support and as much positive information as I can find.

If anyone feels I am expressing bad information I apologize if I offended you. By sharing our information, thoughts and feelings we become a stronger foe to breast cancer.

Rather than complain about what isn't I try to to do something. With that thought in mind I called the chief of staff of onc. at my medical center and I have a meeting with him on Thur. I briefly explained the topic, and he said he will discuss with me in detail.

I will share what he tells me.
I can only do my personal best.

Jean

[Hopeful]

It is wonderful that your doctor agreed to trt with just herceptin and your insurance covered it (?)

My insurance did cover it; had they refused to do so, I would not have had the tx. I was dx in June 2006, after the results of the Herceptin adjuvant trials were announced at San Antonio, but prior to the FDA formally approving Herceptin for adjuvant treatment for early stage patients. At that time, technically, any use of Herceptin with early stage patients was "off label," and there was more flexibility for the ordering doctor to decide how to use it. My onc is in private practice and not affiliated with a major hospital; he said he left and opened the practice to be able to have more freedom in the way he wanted to practice.

I know I am not alone in this experience, because when I joined this community, there were at least two other women who had also received Herceptin in this manner around that same time. Neither of them has visited the board in years.

Since that time, the FDA has approved Herceptin for use in early stage patients in conjunction with chemotherapy. Because of the way that approval is worded, docs now will not use it w/o chemo and insurers decline coverage for it when used w/o chemo. Until there are trials that demonstrate its effectiveness such that the wording of that approval is changed, the tx I had won't be available. I believe that the Europeans are moving toward such a trial for women like yourself, Jean, with very small tumors, negative nodes and ER+. I stay on the lookout for news of such trials, and rest assured I will post on any that I see.

Hopeful

[Jean]

Thank you Hopeful,
you have always been an angel by posting current data on the site in all areas of interest...and it is greatly appreciated.

Regards,
jean

[juanita]

i had just finished chemo and had gone back 3 weeks after the last treatment to see how counts were when the onc told me they had just released herceptin for everybody and after discussing it with one of his partners decided i should do it and wanted to start me on it that day. i did it!