What does HER2 NEU mean to you?

[harrie]

Caya, the bad news with ER/PR+ has nothing to do with the HER2 neu elevation.
The "bad news" with ER-PR is that those hormones can influence the growth of the tumors and therefore will need to surpress the hormone levels which means taking AI meds which may have side effects to deal with as well as the physiological changes that occur with the surpression of estrogen.
maryanne

[Linda]

When I was first dx and had not yet found this website, I stumbled on the book "The Making of Herceptin," which was basically lying around my onc's office with a bunch of Reader's Digests. I have to warn newbies, that reading that book as your first introduction to being Her positive can be terrifying! In an attempt to make the book read like a thriller, it uses overly dramatic language (I still remember "graveyards of women") and focuses on women with the most treatment resistant disease.
I agree that for a old hand, that book is really interesting (especially the history of the funding for Herceptin research -- thank you, Revlon and others in LA!) but at the time, it threw me into a major panic.
Meanwhile, my doc just kept telling me about the women she was treating with herceptin and how they were not recurring. Not one. She reminds me of that every time I see her.
Linda
Stage 3a

[goops]

Linda - I think I like your oncologist - I see we are both stage 3A - it encourages me to see that you were diagnosed at least 1 year before me and I assume by your comments that you have not had any reoccurance.

[Linda]

Hi: I was dx in spring, 05, so I'm over 2 and a half years out. No recurrence.
Still hold my breath a little -- less and less each month.
Best
L

[StephN]

My perspective comes as a pre-adjuvent Herceptin patient. I have loved rooting the Herceptin trials on and cheering the good news on much lower recurrance rates! How my life could have been different!?!

Dx when Herceptin just approved for stage IV. It was a sort of "tough love" time for treatment with taxanes and some other new drugs showing good results.

I got my preliminary path report from my surgeon when I went back for the one week followup after my lumpectomy.
He carefully explained my staging from what we had in front of us. He explained that my sentinal node and the next two were full of tumor so I would need my lower axilla excised and a port placed for chemos.

Not much said about the HER2. Until I faxed that report to a cancer researcher friend who called back with more grave news and suggesting I get a second opinion with a certain oncologist.

After the second surgery I followed up with that advice and had my slides reviewed at the U of W medical center. My meeting with this new team of docs gave me more insight into my diagnosis and the fact that I would need special care to fight my aggressive disease.

Interesting how the gravity of something can break a little at a time so there is time to sort of digest what it might mean.

I never panicked, but wanted to know more about my new Best Friend. I figured better to know the devil then merely be afraid of it.

After my raging mets dx I also found the book, "The making of Herceptin." It had been recently published then, and there was no web site or other support that I could find to interact with others in my situation. Everyone I knew with mets was dying! I felt quite ADRIFT in a sea of uncertainty. That book gave me hope that there were women even worse off than I was who could respond to the Herceptin and live to tell about it. This my first inkling that I too could survive. Learning how others had responded was my main interest in buying that book.

P.S. We learn to keep breathing - even after a mets diagnosis.

[AlaskaAngel]

Hi!

Good post, Steph! So many do not know what it was like to be diagnosed as HER2 more than just a few years ago.

When I was diagnosed I received my preliminary path report in early 2002 and learned I was ER+/PR+ but there was almost no other info on it back then even though it was done at a major cancer center. The Herceptin trial was in progress. Although I knew nothing about it then and would not have been eligible to participate (node-negatives under 2 cm were excluded), I was not given the final path report, and my oncologist did not consider it important to tell me that I was HER2+++ by IHC. I had been under the impression that he would share that kind of information with me but he never did. So I never knew at time of diagnosis that I was HER2+++, but was still expected to make a decision about whether to do chemotherapy and radation. There was no KI# for me to take in to consideration. There was no OncotypeDx then. And even aromatase inhibitors were just for metastatic bc. How can one make a good decision when not only is there a lot to learn but what they do know is from the tests my insurance paid for is hidden from me?

Almost 2 years later the onc still had not told me I was HER2+++. I only found out because I was suspicious and happened to request my final path report.

Needless to say, I did not get trastuzumab as treatment. When the results of the traztuzumab trial were announced there was dead silence from the experts as to what those of us who were NED and were several years out should or shouldn't do. (Since we had not been allowed to participate in the trial, they now had "no data" to know whether we should go ahead and have trastuzumab or not!) Eventually a weak recommendation came out indicating that those who were more than 6 months out from chemo should not have it, since it was considered to work better when given with chemo and by then we were a ways out from having chemo -- plus there was concern about added cardiotoxicity. Then later that evolved further into 1 year instead of 6 months. This was idiotic to me. They freely admitted that the greatest chance for recurrence was in the first TWO YEARS, yet they were recommending initially that those more than 6 months out shouldn't get trastuzumab?!!!? This made even less sense to me since they recommended that almost all newly diagnosed should get the drug. These are the gurus of treatment to depend upon for recommendations?

By then I had also discovered that the tamoxifen I had been taking also had been under investigation for about 4 years as likely being an agent that added fuel to the fire for recurrence for some HER2 positives. My onc never discussed this with me. (After all, why should a patient be told the pro's and con's about a drug until there is more info as to which ones will die from taking it and which ones won't? But... isn't there some logic to the idea that perhaps those at least risk, i.e., early stage, might want to at least discuss it? Especially since drugs like tamoxifen have additional side effects as well?)

By that time Arimidex was available to early stage patients. Instead of having the professionalism to discuss the whole thing with me, he said only that I probably had become menopausal enough to switch to that instead.

Some others who also were part of the Lost Regiment of HER2s decided to argue with their oncs, and eventually they received trastuzumab. My onc neither favored it nor denied it and provided a prescription at my request. But by that time, lapatinib was on the horizon. I put trastuzumab on hold. Eventually the opportunity came around for the TEACH trial, but only those who had done chemo and had never had Herceptin were eligible. I could have had lapatinib vs placebo, and after much independent consideration, decided not to. I certainly may regret that eventually.

I continue to pay attention to what is being learned. I posted an article in the Articles forum today about circulating tumor cells that would argue in favor of my using trastuzumab, and I only wish I had a more reliable person to consult than the oncologist about taking it.

That is how I felt and feel now about being HER2.

AlaskaAngel

[weezie1053]

Being Her2Neu+ means seeking out the best in the medical field of oncology. It means renewing old friendships and forgiving old family members for being human. It is appreciation of neighbors who brought in food when you had no energy to drive to the grocery store or cook. It means signing onto this web site to make sure you are kept abreast (no pun intended) of treatment options. It means learning from the experiences of others who you never have met face to face, but with whom you share your fears and your successes. My life has been changed, but I can honestly say it changed for the better. I now take time to smell the roses and I also try to "pay it back."

Louise

[Carol Carlson]

I was diagnoed in 3/04.. 2.2cm idc 4/18 nodes postive , er/pr/ neg and her2 positive.
Not having ANY knowledge of what being her2+ meant, I started my search. When I did find out, I was very concerned After my surgeries I started my standard chemo and asked my onc. about herceptin which I had read about. She said the studies were still on going and that there was a real concern about the cardiac side effects. SOOOOOO I cont. with my standard stuff and rads. until Oct. of '04. When I went back for a check up in May, she discussed the woderful and hopeful results of the findings and that since there was no protocol at the time about how effective it would be to receive after having been out of standard chemo for 9 months. She called her expert friend at Dan Farber about whether there was a protocal yet on stage 1-2 B.C. pateints receving Herceptin. His answer was bascially. gosh we don't have enough data yet to determine whether or not early stage patients, being out of standard chemo for more the 6 months would actually benefit.
Fortunately, my onc. encouraged me to go on it for a year and they would do the reg cardiac untrasounds to pick up any change or lowering of LVF. I received it for a year and so happy I did. However, at the time they prety much left the ball in my court because they did not have the comprehensive data that they have now.
Over the last 3 years, they do have emperical data to determine that, indeed , it should be given to her2 patients.
When I first found out that I was her2pos., I just figured well, this is Murphy's law.... if I'm going to get something, it's gotta be big and nasty.
I'm now a 4 year survivor and I don't have the same " dread" that first occured when I was diagnosed. I feel that we her2 gals and guys are going to have a much better shot at recovery. Thanks to drugs like herceptin.
Carol