Her-2 and hormone therapy?

Karen Wheel · 07-15-2009, 08:38 AM

I am looking for feedback, or statistics from other “survivors” that are Her-2 positive that have done – Chemo, Herceptin and radiation …. And wondering how many of them have not developed cancer – without doing hormone therapy.

I am not convinced that hormone therapy will reduce my chances (as Her-2 positive) of getting cancer again. However, I have found it hard to find any hard statistics that are based on just HER-2 positive cancer and how it reacts to hormone therapy.

I keep reading this scary quote in so many of the clinical papers that says the “5 year survival rate”… ugh! I want to live more than 5 years!!! J Seems like the drug companies like to base everything on a 5 year life – and that is not acceptable – and I want to have quality of life --- not a life based around the hospital (like the last 6 months of my life!) and not taking more drugs….

Anyone have any feedback on this one? Thank you so much in advance!!!

AlaskaAngel · 07-15-2009, 02:15 PM

Hi Karen,

It isn't the norm now, but in 2002 I did lumpectomy, CAFx6, rads, no trastuzumab, and 1 3/4 years of tamoxifen. I was offered Arimidex for 5 years and declined the Arimidex. I'm still in remission.

AlaskaAngel, 1.6 cm IDC (T1c), some DCIS, ER+, PR+, HER2+++

michka · 07-16-2009, 03:29 AM

This is an interesting question. My first Onc did not want me on hormone therapy. So I asked Dr Burstein in Dana Farber. He answered that in his opinion, I should have it.
I had Arimidex and then Aromasin for 1,5 years with a lot of very bad side effects. I had to stop ( horrible joint pain, severe neuropathy and memory problems). I switched to Faslodex. These side effects almost disappeared. I have very bad mood swings, especially just after the monthly injection, throat pain, mild back pain, fatigue and a little neuropathy. I do not like taking it because I see my body getting old real fast. I want to be on the safe side so I continue anyway but in fact, it is not clear to me if this therapy works for HER2.
I do not know if there is any new information about this. Michka

Karen Wheel · 07-17-2009, 07:45 AM

I did a bunch of research today ... actually, and did find a lot of articles that say that being Her-2 + seems to make us resistant to hormone therapy. So.... guess that answered my question. There were a few articles that admitted there was still a debate going on it, however the first 8-10 I read - all but one said that they found that Her-2 didn't respond well to Hormone therapy. Enough for me to say no to it.... thank you for your responses. Hope this helps us all!
Oh, I searched plain old Google - for
"Her2neu and Hormone therapy"

Karen

Debbie L. · 07-17-2009, 08:59 AM

Karen, this is of course your decision. And as you say, there is not enough evidence to have crystal-clear answers.

On the other hand, there is not enough evidence to make absolute statements like you did either -- that all HER2+ cancer is resistant to endocrine therapy. It is probably more resistant than HER2- cancers - yes. But that does not mean that endocrine therapy is ineffective for all HER2+ cancers, it only means that it's less effective. ( HER2- cancers can be resistant, or can develop resistance also, btw). For HER2+ cancers, especially when Herceptin in used, endocrine therapy may be very effective, as Herceptin may overcome resistance.

I have not heard of anyone with an ERPR+ HER2+ (triple positive) cancer pathology being told that endocrine therapy was of no use to them. Have others been told this?

Do you know the values of your ERPR? Again, it's not black and white - that continuum from negative to highly positive holds some clues as to probable response to endocrine therapy. Although again - no nice, firm, absolute answers, yet.

My suggestion, if your cancer has a reasonable degree of ERPR positivity, would be to try the endocrine therapy that is recommended to you and see how you tolerate it. Some women have no side effects or easily-tolerated ones. If you're miserable, it's not as if you can't get off the train.

Five year survival. It's not as if that's a magic number, or enough to aspire to - I agree. But I think that it's more that if they follow the studies out longer than that, much of the information is a moot point by the time it becomes available because in most cases, treatment has moved on and what they're reporting on is old news, and perhaps no-longer used anyway.

Debbie Laxague

Monica · 07-17-2009, 12:23 PM

Hi,
I tried endocrine therapy a few times, but after much consideration decided to get off of it. It has been over 5 years and I'm NED. Such decisions are very difficult. If tamoxifen had not resulted in unwanted problems, I would have stayed on it. But I am doing well.
Best,
Monica

Karen Wheel · 07-20-2009, 06:40 AM

Thank you for the feedback -

On my hormone %'s -
Est - 80%
Pro- 10%

Don't know what that means overall ... as my doctors here are still trying to explain in Italian and they stop with the argument that "I must" .... that I must trust them and I must do this therapy because they say. Because everyone does.

But, I'm still not sure if I want to subject my body to yet another drug .... I understand some people have little side effects, however it is the overall exposure to the drugs that I am against.

Thank you though - and if you, or anyone has feedback on the 80/10% - let me know ---

Karen

Karen Wheel · 07-20-2009, 06:42 AM

One more thing ...

my Her-2 came back as 3+ ... so top of the scale....

this might make a difference too in how strong it is and leads me to think it might be more resistant to the hormone therapy.

K

Kathy T · 07-18-2009, 07:04 PM

I was on hormone tx. with Herceptin for 5 years as a stage IV--just in the last year did we drop the hormone blockers and add chemo--so it proved effective for me.
Kathy T

Rich66 · 07-18-2009, 07:49 PM

http://her2support.org/vbulletin/showthread.php?t=38998

CLTann · 07-18-2009, 08:37 PM

I am at 4 years NED after mastectomy. The only defense is Femara against recurrence. I kept hoping this is the effective medication. Of course, many women don't have any treatment, no chemo, no radiation and no med and surgical removal of lesion is the only weapon. These are all stage 1 patients.

Ann

Bold · 07-20-2009, 12:52 PM

Hello just wanted to chime in. I have only 2% ER+. My original onc wanted me on Als I went for a secound oppinion and was told it was not nessasary. I should exercise and drop some weight and that would be very effective. I have chossen to do the latter. It is a tough desision because you apsolutly want to do the right thing. I think I am. I hope I am. The new donc said the herceptin is the key. As it coats the cancer cells and does not let them absorb anything. Thenit is viewed as a forign abject and discarded as waste. I like the sound of that. She also pointed out in the New Englan Journal Of Medician that we have a 91.7 chance of total cure if caught early and treated with chemo rads and herceptin. I liked the sound of that!!!!!!! I googled the artical and read it for myself.

DianneS · 07-20-2009, 04:46 PM

Bold,

I'd like to read those stats, too! 91% eh.....? Have not heard that before.

(Tapping foot, waiting.........)

bejuce · 07-20-2009, 03:25 PM

Bold,

Can you please post a link to the article that talks about the 91.7% stat? I'm also 2% ER+ and HER2+ (3+).

Thanks!

DianneS · 07-20-2009, 04:42 PM

I posted about this issue on another thread about Herceptin side effects - sorry.

I live in Canada and ER/PR is rated either +1, +2 or +3, 1 being weak and 3 strong. I am ER+1 (weakly positive) and PR-, and her2 pos +++.

My onc started me on Arimidex aromatase inhibitor in June. I finished the taxotere/carboplatin in March and have had no other chemo except 5.5 rounds of that, plus Herceptin from the beginning along with the TC, and continue Herceptin until Oct.

I didn't really get good answers as to why I should be on the AI Arimidex. She just said 'it'd be a shame after having done so much' blah blah blah. I argued with her and reluctantly began taking it the first of July. I began to notice nausea that would come in waves, and loss of appetite. Since it began about the same time as when I started Arimidex I blame it on that. I was expecting bone/muscle pain, if anything, not nausea. I stopped the Arimidex and have not taken any since Saturday a.m. Nausea is better!

I would like to read more about taking AI's if one is HER2 pos+++ and weakly ER+. So far I am not convinced that it works that well for my diagnosis.

Karen, I feel like you do....lots of frustration and fear about this 5 year survival stuff. One of the first things my oncologist said to me regarding NOT doing the chemo route was 'I think you'll be sorry you didn't in about 5 years'. Yeah? Will I be sorry anyway? I find it hard to get thru the day sometimes, the sorrow of it all overwhelms me......and I am angry that this had to happen to me! If Herceptin is so wonderful, why only a 5 yr survival rate? Where are the 10 years out from her2 positive women?

tricia keegan · 07-21-2009, 05:17 AM

I'm highly triple pos (3+) and have been taking arimidex since my ooph two years ago. I haven't heard this before and as I just celebrated four years out I've been thanking arimidex for that!
I still feel I prefer to take it than not, there's just too much not unknown on her2 for me to not do all I can to avoid a recurrance.

Hopeful · 07-21-2009, 07:22 AM

I was reading an article by Edith Perez on line yesterday (which, of course I now cannot find when I need it) but it gave the most precise breakdown I have seen for what AI's can do to help prognosis. The article addressed the different drugs individually. What was surprising to me was the stat for the benefit of Femara on recurrence risk: 60% overall relative reduction, but 14% relative reduction for distant recurrence. The main benefit of these drugs is preventing local recurrence or a new cancer from starting. While there is some protection against mets, it is nowhere near as strong. As I am considering stopping AI treatment early, this is an important consideration for me. I will continue to noodle around on line and will post a link to the article if I can find it again.

Hopeful

alicem · 07-21-2009, 11:07 AM

Karen -

I so agree with you about having to take one more drug.

For the last 15 years of my mother's life, she must have taken 20 pills a day. Now some of them were vitamins and over the counter drugs, but I just hated to see her at the breakfast table every morning - - counting them out. I was even audacious enough to ask her not to do it in front of my girls (they were pre-school age at the time, and I was worried they would think it was candy or something like that . . . sorry mom

). I swore then and there that I was going to do everything in my power to NOT be in her shoes.

I have hated every pill I have had to take these past 10 months, but I realize they have been necessary as well as beneficial. I hate that I will be taking Arimidex for 5 years but . . . if it reduces my risk of ANY recurrence by even 1%, I will take that pill. I have been taking it for about a month and the only side effect I notice is some mild bone pain. I do find that if I get out for a walk or a bike ride that I don't notice the pain at all.

Now as to why I decided to take the pill, I have written about this before in another post . . . http://her2support.org/vbulletin/sho...729#post201729. You can go there to read about the details of my friend, but basically, she decided to stop taking Tamoxifen because she didn't like the side effects and she didn't like taking a pill. Her cancer was caught early so she figured she would be fine. Her cancer came back into her bones and her liver and she died one month ago. Before she died, she told me that she wished she had put up with the side effects. She told me that she will never know if it would have made a difference. She was not bitter, just sad. She left behind a wonderful husband and 2 young children.

I don't know if the Arimidex is making a difference for me or not. But, I don't want to second guess myself 5 years from now. That is my choice. I fully understand your choice just like I understand women who choose not to do chemo, or who choose not to have reconstruction. I have done what I feel is best for me and you need to do that for you as well. I just wanted to tell you Liz's story so that you have enough information when it comes to making your choice.

I can't tell you how often I wish that science was about 10 years further down the road so some of these decisions would be clearer. But I am where I am and grateful for it because it could be so much worse. I am grateful that this is not the breast cancer of my mother's era.

Karen Wheel · 07-23-2009, 06:23 AM

Gosh, I feel really stupid - but I don't understand a lot of what I read sometimes with all the terms for cancer - guess that's what happens when you get diagonosed with cancer in another country (and language!) ugh!

Keep seeing this AI - and need to do more research I can see but I feel like hours a day get sucked away by reading on the internet --- and to talk to my doctor here about it is difficult as she does speak some english, but I find I speak to her in Italian and she understand much better ---- and my Italian isn't that great!

But am I the only one who feels dumb, or overwhelmed with all this information and medical language???

Is there a HER-2 for dummies - link out there for us? :-)

Thanks - I feel better already just admitting it! Thank god for this support group - as this has already proved to be a life line for me!
Karen

AlaskaAngel · 07-23-2009, 09:28 AM

No, Karen. We are lucky enough to have some people here who have particular abilities to analyze scientific jargon and complicated studies and share what they see in those studies for consideration. There are things that they too find confusing at times, and it helps to have others look at what they are seeing.

We all have different pieces of the puzzle and work at the same table to try to put them together as best we can. It isn't easy because with more information coming out all the time, the puzzle picture we are trying to see and work on together is changing just a little bit as we go along.

It is hardest of all for the newly diagnosed. Just keep trying, and share what you learn. None of us are able to see the picture perfectly. Nor are the oncs. Not yet.

AlaskaAngel