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

Jean · 10-21-2008, 09:02 AM

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

Patb · 10-21-2008, 09:22 AM

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

Becky · 10-21-2008, 10:03 AM

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.

rebecca0623 · 10-21-2008, 11:20 AM

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!

Andrea Barnett Budin · 10-21-2008, 12:49 PM

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??

mts · 10-21-2008, 12:50 PM

There should be a Living Proof Part II ...

Les · 10-21-2008, 01:50 PM

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

Her2nSue · 10-21-2008, 02:10 PM

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.

Sheila · 10-21-2008, 02:32 PM

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!

StephN · 10-21-2008, 02:32 PM

"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.

StephN · 10-21-2008, 02:39 PM

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!!!

Rich66 · 10-21-2008, 02:43 PM

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.

StephN · 10-21-2008, 02:51 PM

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??

Barbara H. · 10-21-2008, 03:38 PM

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.

Joe · 10-21-2008, 04:40 PM

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

fitztwins · 10-21-2008, 04:55 PM

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.

Sheila · 10-21-2008, 06:07 PM

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.

StephN · 10-21-2008, 07:30 PM

Hey Sheila -

I get it!

swimangel72 · 10-21-2008, 07:56 PM

Steph - in answer to your question:

Quote:

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.

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.

harrie · 10-22-2008, 12:30 AM

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....