Okay I need to vent here it goes....
 

http://www.medicalnewstoday.com/articles/126019.php


I am really angry that many of my sisters were not given hercetpin because they were early stage or not in a time line after chemo. (By 2004, 2005 especially)
dr. were aware of Her2 and how aggressive it was. I remember clearly the day I met with my surgeon after my surgery to discuss my pathology report. He told me how well my surgery went, clear margins, that I was estrogen positive pr negative, BUT I had to ask him
about HER2...yes he told I was positive , but not to worry since I had was node neg. and caught my cancer early with a small tumor.

I was very annoyed at him, and started to ask him about herceptin. He just said I doubt you will need chemo/
let alone herceptin. But you can talk to the onc.

Okay - This was in 2005 and I knew from the moment I read my pathology report and being Her2 I needed hercetpin.
Tell me, why when Dr. Slamon was telling
other onc. that all women who are Her2 should be treated with herceptin were not given the drug off label? Why ....it is a shame.

I had to fight and battle, see 4 different top dr. in New York and at this point one onc. was telling my husband I should seek some help since I was not accepting my dx.

I should just lay day and accept I could not have herceptin. I am really annoyed that dr. who are the top in the field told me and I am certain thousands of other women the same bad information.

I finally went out to see Dr. Slamon whose exact words were "the Dr. in NY missed the boat" yea, they did and
at my exspense to my health and many other sisters.
I did get hercetpin 11 months later and only because
I refused to listen.

Did I appear to be a bit crazy to freinds and family, I am sure I did when day after day I pushed for treatment.
I had to endure listening to a best friend (who is not longer) what is wrong with you, you caught your cancer early you are fine. Family who thought I was way too intense!

Well, when I came back home from Calif. after seeing Dr. Slamon and started treatment, know what? Many felt so bad for what they did and said they could not feel comfortable and face me.

I sit and wonder how many other of my sisters had this pain and frustration. I have never allowed myself to feel the anger until today when I read the above article.

Also after seeing the Lifetime movie of Dr. Slamon I really don't know how he puts up with the road blocks and frustration.
So forgive me ...but I needed to voice this.

Jean

Jean I understand , you were one year earlier than
me 05, I was 06 and had no problem but was really
not encouraged one way or the other since no nodes,
clean margins, etc. I insisted on Herceptin thanks to
this site and information about it and am thankful
everyday. Vent on for all the ones totally refused and
who had to wait for it for months.
patb

I was in 2004. Just yesterday my mother called me and said she saw Living Proof twice (Saturday and Sunday) and said, "thank God you didn't relent and got that drug". She commented on the character, Ellie, who showed up early for the Phase 3 trial (who I think is depicting our Ginger Emprey who slept in front of UCLA hospital to get the last spot on that trial). She said, "I thought you just were nuts. You had chemo. You can't have this drug. Let it be. The doctors know." But she told me I was right. I did the right thing. I told her you have to fight for your life - and you really do sometimes. That was my fight for my life. I don't care how many doctors I have to switch (found a new great rad onc to follow me:)). I don't care about not being a good girl. It allowed me to continue to be a good friend, a good wife, a good mother. Being a bad patient allowed me to be good at everything else, at least for a while longer.

Well, I will add that in 2008, even though herceptin was approved for early stage, I had clean margins and no nodes and had to go for second opinion to get herceptin myself. There was no opinion that I would not need chemo because of my age, but I will echo the previous sentiments that my first oncologist thought what I wanted (Herceptin) was "overkill" - I said - but I only have one opportunity to overkill right! I had the fortitude and the knowledge from this site and the research it lead me to so Thanks, Thanks, Thanks!

More Outrage...
 

I hear you loud and clear, Jean!

In '98 my top NY onc never brought up the subject of HER2 or Herceptin. I asked for the test. I had been reading about it (keep up-to-date on all things bc since my initial dx in '95). I knew H was in third stage clinical trials. I thought -- IF I am HER2+ (and I just had this inexplicable feeling that I was) -- MAYBE I could get into a trial. One was ongoing w/my Florida onc.'s office.

I was HER2+. But -- I had too much chemo from '95 and was disqualified from the trial. Lucky for me H got FDA fast-tracked and became available to all metastatic patients 6 wks later! I feel so blessed to have been in the right place at the right time.

My husband was distressed that I was HER2+ b/c he knew how aggressive it is. But, in my mind, the know what's causing *my* bc AND they have developed a drug to shut off my specific malfunction.

I've hugged Dennis Slamon in an exam room in Santa Monica, thanked him profusely and Paul and I were walking on air for at least 2 days after our meeting and chatting -- each delighted to meet the other. I represented the fruit of all his labors. He is my hero!

However, I have a friend who was recently dx w/bc. Lumpectomy. Radiation. Clear around the margins. But they did not check lymph nodes. They did not check for HER2. I tried to urge this much beloved dear old friend, but she assured me repeatedly that she was getting excellent care. Yes, but, like you Jean, w/top NY oncs -- in '07! -- and not testing for lymph nodes OR HER2???? I am still beside myself with worry... And outrage...

Surely this is not an isolated incident. HOW CAN THIS BE HAPPENING??

There should be a Living Proof Part II ...

Hi I was dx in 2003 treatment throughjuly 2004. no herceptin becacuse it was still in trials . I was 45 at dx 1.3 cm idc no node her2+++ erpr+ I had a lumpectomy and sentinal node a/c and rads. I have been on tamoxifen for 4 yrs now, I tried toget herceptin but was told that it was too far out from treatment and wouldn't help. I have been lucky so far but this summer I was dx with melanoma stage 1b and now I'm wondering what to do about having a period after 18 months of thinking I was menapausal my last bloodwork had the estrodril at 26 I had an ultrasound and biopsy and was told that it was endometrial hyperplasia.Does anyone know abut this ? Does this mean that I need to have a hysterectomy? Is this caused by tamoxifen?I was at my primary Dr. ofice the other day having my thyroid checked and the nurse practioner said to me that "I must feel like my body is betraying me" NICE .I may feel that way but I don't need to hear it . oh well thanks for reading this Leslie

MTS, I'm in agreement with you that there should be a Living Proof 2 movie made. I saw the first one and was in complete awe and disbelief in the callousness of some of the dr.s in charge of the trials. Thank God for all of us that Dr. Slamon was as much of a fighter for our lives as we are.

I was one of the "unlucky" ones who did not qualify in 2002, because I was Stage I. Seems hard to believe I had to be Stage IV Metastatic to get the drug, which I did in 2003...just wonder if things would have been different if I had it when diagnosed. It just shows how fast progress is made, and yet from the posts, how many oncologists are not up to date on standard of care...another reason to educate ourselves so we are the best advocates for our treatments!
After watching the show twice, i wonder how hard it was on Dr Slamon to turn women away, knowing full well he was sending them off to die....just another reality check on science and clinical trials and the "rules". I guess that is why so many medical people distance themselves from becoming too involved with patients, it must be very difficult!

"Living Proof II" - GREAT idea. There would be plenty of information once those first trials were over and the data was accepted by FDA. We have TEN YEARS' worth, for Heaven's sake!!!

There was the problem of "humanizing" the mouse antibody so that our bodies would not fight it off before it could get to the tumors. Plus the problem of how to make MORE of it so that it could reach the waiting masses of patients. Here is where the Chinese Hamsters come in. (Are you listening, TipToe?)

Then we have the next set of trials with Taxol and then the HERA and adjuvent therapy trials here. So we did not just go from those trials in the movie to Herceptin being available to everyone.

Not mention the many stage IV patients who have their lives to live due to getting long term Herceptin (with or without other drugs).

The early story sprang from a sort of Hollywood "fairy tale" and Renee Zellweger may not have interest in the follow on. However, I would bet my next summer's roses that Dr. Slamon would happily cooperate.

Hey Sheila -
Having met Dr. Slamon, I know he is NOT a cold hearted person. You would agree, I am sure.

When you are looking at the possibility of saving thousands of future lives, some have to go by the wayside in order to reach the goal he clearly had in his sights. I am sure his heart wrenched, but he kept the higher goal in mind.

These women were more than "lab mice" to him, but, as a researcher, one has to keep science uppermost to get the approval.

Just think how many women are alive today in the 10 years since approval. Boggles my mind!!!

Same deal with my mom back in early '05. I'd like to publish some of the dr notes from the second opinions I got at Mayo and other places when everyone thought I was making much ado about nothing. I just burned out on the process..felt like I was searching for an onc to validate my own interpretation.

Now I respond to the article in Jean's post.

"Only one quarter (26%) of 200 clinicians said that HER2 test results were routinely available at the time when a decision is being made about whether a patient will benefit from chemotherapy together with the HER2-targeted treatment trastuzumab (i.e. greater than 75% of the time) - during what is called the 'multi-disciplinary team meeting' (MDTM)[v], according to the results of the North of England Cancer Network audit. The results were presented at the 2008 annual conference of the National Cancer Research Institute."

At my cancer center they have "Breast Clinic" days when new patients meet their treatment team. This kind of meeting is what is referred to in the above statement, when so many do NOT have the HER2 status. FISH test takes a while, but IHC is quick.

This report was shocking to me, and I put the blame on the path labs. Not sure WHO orders which tests - if it is the surgeon because until a diagnosis of cancer is reached we are not yet on board with an oncologist. Anyway, that is how I usually understand the process.

If there has been a needle or other biopsy then cancer is either known or suspected. Often the surgery proceeds quickly before the oncology appts. That was my case and the path was quite complete, thanks to my surgeon.

What does anyone else have to say about that??

I didn't know that I had HER2 cancer when I was first diagnosed in 1998. Nevertheless, Herceptin was in the news, and during my treatment I asked about it. A few years later I found out that I was HER2 positive and would be eligible for Herceptin if I recurred. I was never told that HER2 cancer was aggressive. I was told that ER and PR negative was not adventagious. It is amazing now to me that it took me six years to recur as an ER, PR negative patient. Herceptin did work for me initially and has kept the cancer mets in remission that I presented with. Unfortunately, they later appeared in the bones and I needed Navalbine and now the Heceptin MCC-DM trial to keep them at bay.

Sometimes I am sad that I couldn't have Herceptin initially because I feel that maybe it would have kept me in remission. I am happy that it is available to new patients.

Best regards,
Barbara H.

In 2001, when our organization was founded, HER2 stauts was never routinely checked. Christine was one of them. When her oncologist was reviewing the pathology report, Chris asked, "What is my HER2 status?" She was never tested. The oncologist immediately called up the testing lab to confirm that there was still tissue sample available and then called the surgeon who ordered the tests to have it tested for HER2.

Christine's HER2 report came backs as HER2 3+++ "highly overexpressive". This saved her life and as a result one of the missions of our organization is to educate the patient about their disease and thus empower them to become partners on their healthcare team instead of just patients.

Regards
Joe

Because of sites like this one and BC.org I asked about my Her-2 status. I got herceptin at the END of my treament after first dx. I asked to get it for 2 years, but was denied. I wonder if I would have been kept on it, maybe my cancer would not have recurred to my pelvis.

Steph
I did not want to make it sound like Dr Slamon was cold hearted, I was just saying how difficult it must have been on him to see this through...ie the crying scene in the movie. We have our extended lives thanks to the hard work and dedication of this man and the women who were in the trials.

Hey Sheila -

I get it!

Steph - in answer to your question:

my breast cancer surgeon ordered the Fish test for me. Originally, the radiologist who performed the ultra-sound needle aspiration biopsy sent all the samples to a lab and the pathology came back quickly ER+ PR+ and Her2 equivical. Then someone dropped the ball. The surgeon blamed the lab - I blamed the surgeon's office staff - they seemed very overworked and were also in the process of moving. I had my mastectomy and it was nearly a month later (due to all the time I spent in the hospital after the staph infection) when I finally got to see the oncologist. He was shocked that the Fish report never came through. I was very impressed to hear one of the secretaries yelling on the phone at whoever was holding up the results - and within minutes, my Fish report was faxed to her machine, and my onc had a much more serious expression on his face when he told me I was Her2+++. Actually he was so shocked since my Oncotype Dx was just 22 - that he sent the tissue samples to another lab for a second Fish test. This one confirmed the first test and came back with an even higher Her2+ reading.

I'm so happy that my onc changed his original recommendation from "no chemo" to "Navelbine with Herceptin" once he knew I was Her2+. My treatment was unconventional - but he didn't think I needed standard chemo which could hurt my heart or make me lose my hair. He said that Herceptin would work well with any chemo (according to some study). I was worried about that - but 3 different oncologists agreed with him, so I've stopped worrying. I'm still on the Herceptin, twice-a-week, until April. Can't wait to be finished - but I'm so grateful to Dr. Slamon and the brave women who went through the trials to make Herceptin available. And I do worry about women with early stage BC who are Her2+ when their doctors tell them they don't need "chemo".......it's not ABOUT their need for chemo - it's about their Her2+ status and their need for Herceptin! Until studies prove that Herceptin alone works well for early stage BC, many oncs will keep telling women that the risks for SEs from the chemo is greater than their risk of recurrence - which I believe is very misleading.

Great article Jean, great post. I never realized you had to fight so hard for your herceptin.
I guess I was very lucky ONCE AGAIN. I was dx Oct 2006, just in time for the early stagers to get herceptin and my onco was on top of it all to have it tested in a timely manner.
Then just to be absolutely sure, I went for my 2nd opinion with Dr. Pegram.
I have been blessed so many times I have lost count....

in 1999, I asked the oncologist about my HER2+++ reading and was told, like you I didn't need Herceptin because my cancer was DCIS, I was also told I had clear margins about a mastectomy and didn't need chemo or radiation. well, then it came back in 2003 as invasive. I had read up on herceptin in '99 but all the doctors said no.
today i wouldn't be so trusting.
sarah

Mixed feelings
 

Hi Jean,

Your post is letting all of us vent, and hopefully that is a good thing.

I have very mixed feelings that are very much in context with where I fell in the timeline for the recommended treatments.

No one was routinely being tested for HER2, or treated for it routinely with trastuzumab when I was diagnosed. My surgery was done at a major cancer center and tested for HER2, but those results did not come back until sometime after all the other results were back, and I was never given the results for the HER2 testing. My onc neglected to even provide standard discussion about treatment, partly I think because I was primarily treated in Alaska and not at the cancer center -- and my PCP believed the onc had covered all of it with me while I was in Seattle. So I didn't know I was HER2+++ by IHC until I was almost 2 years out.

When the success of trastuzumab was announced, I and a lot of other HER2 positives were hanging off every bit of news, waiting to hear anything about what it meant for those of us who hadn't been in the trial. There was ZERO information provided to us.... day after day, week after week. We had to hear over and over what a "miracle" drug this was, and how "all HER2 positive patients now were going to benefit from this drug", but at the same time the actual result was limited to "all newly diagnosed HER2 patients". To us that clearly said loud and clear that even though our risk was identical to the risk for those who were newly diagnosed or even greater than some newly diagnosed with smaller tumors, etc., we were left in entirely in limbo. It was as if we simply did not exist to the oncology community. They didn't even have the humanity or wisdom to talk to us at all. How could that build any trust in what they are doing?

Eventually the information was provided to indicate that because we'd already had our chemo, we "missed out" because Herceptin "works better" with chemo (although there was no information provided as to the technical basis for this justification. And while I am at it, can anyone here explain more precisely why it works better with chemo?). At first the recommendation was that anyone who was within 6 months of completing chemo would be eligible for trastuzumab, and later that was changed to within a year of completing chemo.

No one has EVER explained why trastuzumab was not recommended for all of those people who were less than 2 years out from chemo. Considering that we are told over and over that HER2's are at greatest risk during the first 2 years, what sense could it possibly make to deny those who were over a year out from chemo and less than 2 years out the ability to have trastuzumab?

I was past 2 years out at the time. My onc was willing to provide but not in favor of it. A second opinion from the same major cancer center was the same. I chose not to have it.

I am 6 years out and so far, still NED. I know there is a percentage who get it and think they are benefitting from it even though they get no benefit. I know there is a percentage that fail on it. I'm glad that so many here have benefitted from it. I too find it appalling that for some the testing for HER2 still apparently is not routine.

I have very mixed feelings about how the oncologic community has responded to those of us who are HER2 positive.

AA,

The initial criteria used in the adjuvant clinical trials included the "2 year rule". BUT there is nothing in the Herceptin Labeling or "boxed Label" which places this restriction on patients. It is solely up to the prescribing oncologist:

Here is the "official" labeling

http://www.gene.com/gene/products/in...rescribing.pdf

Regards
Joe

anthracycline without Herceptin
 

Good discussion
 

Joe: Thank you for that info, as it is new to me. One other problem for me was that I specifically asked my oncologist at the time about clinical trials, and even though HE knew I was HER2 positive he did not mention the trial to me since I was both node-negative and under 2 cm (not eligible for the trial). A patient can be asking the "right" questions to the best of one's ability and still be left out of the loop....

Deb: As I understand it, TOPO IIA testing doesn't require a fresh sample, and someone did post recently that a test for it has been approved... You know quite a bit about the process behind clinical trials, and I am wondering whether it would provide reasonably important information to collect a representative group of those of us who "missed out" on traztuzumab and test us to get more of an idea how relevant TOPO IIa testing actually is? I gather that about 1/3 of HER2s would be TOPO IIa? Wouldn't it also help in deciding whether (or not) to do other therapies? Wouldn't it also provide some insight into whether there are HER2 positives who both did not get trastuzumab AND are not Topo II and have not recurred?

I definitely have followed the questionable treatments and understand the need for caution. But evidence-based medicine stumbles around when trials for nontoxic treatments are subordinated to established toxic regimens that are already known to work for less than 20% of the people recommended to receive them.

What they do not know is 2-fold:

1. The effect of chemotherapy may be stronger initially, but since chemotherapy effect only generally holds for around 5 years (and the evidence long-term for trastuzumab with or without chemo is not yet in), having adjuvant trastuzumab "late" without chemo may in fact be MORE effective in that the combination treatments in that the immune system has not been damaged (not to mention, the patient has not been left carrying an extra load of fat from the drugs like steroids that are given with chemo, and thus MORE predisposed to recur).

2. Is there any technical explanation after multiple years now of why chemo given with trastuzumab would actually be more effective?

>AA said: Deb: As I understand it, TOPO IIA testing doesn't require a fresh sample, and someone did post recently that a test for it has been approved... You know quite a bit about the process behind clinical trials, and I am wondering whether it would provide reasonably important information to collect a representative group of those of us who "missed out" on traztuzumab and test us to get more of an idea how relevant TOPO IIa testing actually is?

I don't know, AA. If Slamon is correct, it would mean that at least in countries where Herceptin is available, topoIIa status is a moot point (ie: not relevant at all). He uses it only to make his case that anthracyclines have no place in current treatment, when he shows that the stats that appeared to show an increased benefit of anthracycline for all breast cancer, or even for all HER2+ breast cancer, were not truly showing it for all. They were reflecting a large increased benefit for topoIIa+ cancers and none at all for the rest. The increased benefit in that small group was strong enough, however, to skew the stats for all. And at that time, we didn't even know the subgroup existed. (I wonder how many other subgroups we'll learn of over time - that we don't have a clue about today).

I wondered if there might be some link between topoIIA+ and response to Herceptin, since there seemed to be no subgroup of Slamon's cited studies where there was an additional benefit for an anthracycline with Herceptin, even though we know that only about 1/2 of HER2+ cancer responds to Herceptin. So in that 1/2 that doesn't respond, shouldn't we see 1/3 of that 1/2 (1/6 of all HER2+, if it's randomly associated) who did get an additional benefit from the anthracycline? Maybe it's too small a group to show significance, or maybe being topoIIa+ has something to do with Herceptin response? I'm sure that they looked at that, so the answer must be - no association between topoIIa status and Herceptin response.

I wish that I knew more about clinical trials. NBCC has a Project LEAD course on clinical trials, held every two years, and I think it begins in early November. Is anyone on this list attending?

> AA: Wouldn't it also help in deciding whether (or not) to do other therapies? Wouldn't it also provide some insight into whether there are HER2 positives who both did not get trastuzumab AND are not Topo II and have not recurred?

As I said above, I don't think that it has any relevance, if Slamon is correct. Again, most any information about those who didn't get Herceptin is now moot, in our country at least. I would be interesting to those of us who didn't get it, but the information would have no practical application. That also applies to discussions of "late" trastuzumab. Science has moved on (and left you and me in the dust).

I'm curious (if you don't my telling us) why you did not take your onc up on the offer to do late Herceptin? Was it cost? Or some other hesitation?

I'm not sure what you're asking when you ask for technical information about why trastuzumab works better with a chemo. You mean the biological/cellular explanation? I don't know. It would involve one of those complex growth pathway diagrams that make my head hurt. And as far as synergy, I don't know that they do understand the phenomenon at cellular level - they are simply able to measure it from clinical observation. But I could be wrong.

Do you remember in the movie, Slamon/Connick said something about Herceptin being able to keep disease stable but not able to shrink it? Maybe that's why it's better with a chemo? Most of the targeted therapies (Avastin, Tykerb) seem to work better, or work only, with a chemo. I don't know the answers. But the questions are interesting.

Debbie Laxague

I am finding this very interesting. I was diagnosed in Feb. of 2000 and my surgeon is the one who told me of my Her2 status and that it was an agressive cancer but the good news was that there was a drug, Herceptin, specifically for my kind of cancer. After meeting with my oncologist I was devastated to learn that I didn't qualify for that trial. My tumor was too close to the chest wall and that excluded me from the trial for patients who were not metastatic. At least that's what I understood at the time. I talked to someone at the Oncology office about this and she told me that the good news was that I would get the drug if I had a recurrence. At the time I thought, no, the good news would be if I never had a recurrence. I had that recurrence and started Herceptin along with Taxotere in July of 2001. I have always been grateful for Herceptin and the timing of the drug for me but after watching the movie I'm even more grateful!

Love and thanks to all those that have gone before us. I taped Living Proof and have only watched half of it. I think it is very well done. Thank goodness for Dr. Slamon and those that have struggled thru the science and trials in order to advance treatment for all of us. I, too, feel like one of the lucky ones. I had a bioposy on a Tue in April 06 and in less than a week I saw one of the best surgeons in town. She told me all about Her2. I was clueless. She referred me to an excellent oncologist. They all told me right away (April 06) that I would be having Herceptin. Knowing what I know now, I am so thankful that Herceptin was prescribed for me without question. I would not have known enuf to ask for it. My other thanks goes out to Tricia K in Ireland. She found me snooping around the Komen site for info about Her2 and directed me to our site. I am a lucky woman. Thank you all for sharing your wisdom and support. What a wonderful group of people.

Hugs to all, Catherine

Did I read correctly that herceptin actives the immune system? If so, how does it do that?

I have drawn this article to the attention of UK patients
 

So far, everyone has said that they got their her2 result soon enough.

There can be problems because of shortages of people to do the tests. According to a doctor I met at a party (who did not know that I was a cancer patient), the government put in very hard standards for the test interpreters with harsh penalties for people who failed the tests. As a result, people focus on just qualifying to do one test. This doctor had worked on the European continent before and most people there had one main test they did and one or two others that they did as needed. Major problems can arise if something happens to the person who is qualified to do the test. I was in chemo with the woman who did the BRCA1/BRCA2 tests and she couldn't even get herself tested because she was THE person who interpreted the results for a wide area.

It will be good to know where the her2 test is still a problem so the blackspots can be sorted out and I have told people to keep a look out for this.

Herceptin activates the immune system because (in theory) the herceptin attaches to the outside of the cancer cell preventing receptor crosstalk (which leads to reproduction). So, the cancer cell is just hanging out not being able to do anything. Some cancer cells will die a natural death. Others are theortically killed by the immune system because Herceptin is an antibody that is "non self". The immune system attacks "non self" things so the immune system attacks the Herceptin (which is attached to a cancer cell) and anniliates both.

A few comments that are just my opinion (but based on a variety of facts).

I think the immune system doesn't recognize some established cancers because they have alot of "self" because they are from you and not from the outside. However, there are also alot of studies that cancers can and do camofauge the immune system but perhaps the "helping" effects of our immune systems is because of the "self" theory (which is my opinion).

Secondly, when the body doesn't get rid of that first pesky cancer cell I (again, my opinion) think its other mechanisms besides the immune system. It may have to do with the function of organelles (like mitochondria) in the cell that are faulty and perhaps cross talk between cells that goes awry. For example, one function of the mitochondria is to give signals for abnormal cells to undergo cell death OR signals to the chromosomes (or specific genes on the chromosomes) to fix the abnormality. Perhaps the fixing part isn't right - it is partially fixed and the cell can continue to survive and then reproduce (perhaps this is the first stage of getting cancer - aplasia, then hyperplasia, then dcis etc). The first steps may be that the cell and cell environment may not recognize that first small change and fix it. This would make some sense since cancer is (primarily) a disease of older age. Also, I want to say that cell environment could benefit one thing happening over another. Examples of this would then (or might) be impacted by environmental factors. Let's say you are overweight and don't exercise - you might have more estrogen or insulin growth factor bathing cells which could influence the "fixing" factors. Omega 3/6 balance etc. Please do not misconstrue that I am implying that we caused our own disease at all. Our own genetics are at play BUT studies have indicated that foods, vitamin D, exercise etc can prevent cancer to begin with and reduce recurrence. We have learned a balance omega 3/6 does the same etc, etc. Therefore, there can be some creedence in "manipulating" the cellular environment to help ourselves. Even HRT is a negative manipulator (for example).

I am just talking out loud here. I like to think I can have alittle more control of my own fate (both present cancer that I know I had and any that might have been).

This is a great place to vent. And it doesn't blow up the board. I am one of the lucky ones. I was diagnosed in late October 2005, when info about Herceptin and Her2 was heating up and this board was available. I had an aggressive oncologist who helped me get a free Oncotype test and who recommended Herceptin. I am grateful.

Sharing ideas
 

AA: Wouldn't it also help in deciding whether (or not) to do other therapies? Wouldn't it also provide some insight into whether there are HER2 positives who both did not get trastuzumab AND are not Topo II and have not recurred?

Deb: As I said above, I don't think that it has any relevance, if Slamon is correct. Again, most any information about those who didn't get Herceptin is now moot, in our country at least. I would be interesting to those of us who didn't get it, but the information would have no practical application. That also applies to discussions of "late" trastuzumab. Science has moved on (and left you and me in the dust).

AA: Why do you think that finding out if there is a subgroup with possibly unique characteristics that require no therapy at all would only be interesting to those of us who have not recurred, and that finding out would have no practical application to current or future HER2's? Why would you believe it is not worthwhile to question whether or not there is such a subgroup? Are you assuming there is no such group without investigating whether there is or not?

Deb: This also reminds us that the immune system does not recognize successful cancer.

I don't agree that this has been proven. It very well may recognize cancer and succeed in keeping it at bay for most people, and fail only in certain subgroups with particular characteristics. It may continue to work to a significant degree in slowing cancer in those who have "more favorable characteristics", including characteristics other than those that are genetic (such as eating and exercising and not smoking, etc.)

I'm curious (if you don't my telling us) why you did not take your onc up on the offer to do late Herceptin? Was it cost? Or some other hesitation?

Probably for the same reason I don't depend on winning the lottery, or on the majority of our politicians to use common sense in dealing with economic buyouts. It had little to do with cost, other than a personal reluctance to devote such a big chunk of health care resources to a 50/50 chance (and only stage I at that) for being fortunate enough to have good health care insurance.

A.A.

Here We Round Around The Old Issue Of Late Herceptin And It Still Stinks. AA., You're Right There Never Were Any Direct Answers To Those Who Missed Herceptin And That Sucks.

I Had To Research Late Herceptin Until I Drove Myself Nuts Where I Finally Decided I Needed It, After Being Kindly Counseled By Neil Spector- Expert On Her2 Pathways And Lapatinib Innovator And Director Formally Of Gsk Labs. I Pray It Was The Right Thing For Me AND I DO BELIEVE GOD LEAD ME TO THAT CHOICE.

PS. JEAN, ME TOO, YES, I DID HAVE TO CRY TO MY LOCAL ONCOLOGIST IN ORDER TO GET LATE HERCEPTIN... IT WAS A REAL FIGHT AND PLEAD FOR MY LIFE.

When I was dxed in '03 - I was almost the perfect candidate for Phase III trials, (but I would have also been randomized...) however we could not get a clear enough picture of 'something' on my liver, which turned out to be only hemangioma. In my case, sometimes no-one or nothing is really to blame, just is what it is. Consequently, I didn't qualify.

I wasn't entirely sure I really understood what the trial would entail anyway, and what it would really do for me, even though my onc did a great job of explaining it to me. I was just too green to "get it" at that point.

When I recurred 15 months out of treatment, my onc presented me with Herceptin as a great opportunity. I loved him for that. He still says that we have a lot of opportunity with Herceptin and here I am on it for my second time, this time as a double targeted approach with Tykerb. I would love to kiss both Dr Slamon and Dr Spector, and someday I hope I will get the chance. I also hope to enjoy the opportunity of Herceptin, Tykerb (and whichever new targeted agent is in the pipeline) for a very long time to come!


(where Dr. Spector is now: http://inside.duke.edu/article.php?I...ParentID=14669)