Her-2 and hormone therapy?
 

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!!!

Variations on a theme
 

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+++

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

Her-2 and Hormone therapy
 

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

things to consider
 

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

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

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

thank you -
 

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

response to Debbie
 

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

I am Her2 (3+) ER was 50% and PR negative. I will be a 5 yr survivor in early September. I started with Tamoxifen for a few months but got my ovaries removed to take Arimidex which I have been on almost 4 yrs. I am doing well

Karen,

What endocrine therapy are they prescribing for you? Are you pre or post-menopause?

Hopeful

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.

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!

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?

Stats
 

Bold,

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

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

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.

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

http://content.nejm.org/cgi/content/full/344/11/783

I am sorry it has taken me so long to get back. I have my computer getting de -wormed and I am at the mercy of my DH to borrow. I belive this is the article. I had to start over finding it so I am not 100% sure. I had it bookmarked on my computer.

2% is so nominal. I think that I have made the right choice. I think that sometimes we forget what a great drug herceptin is. It works very well to cure early stage cancers. Not to mention how it can put stage 4 into remmision for years.

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.

Hi Karen, I am Her2, 3+, Er & Pr weakly positive. (Er 15% & Pr 10% if I remember right?) My onc wanted me on an AI but I was peri-meno. FSH & estradiol checked every 3 months so I decided at that time to have an ooph so I could start on an AI.

My FSH & estradiol levels never went into menopausal range until just recently. (It took almost 2 yrs since my ooph to now be menopausal.) So in all that time I have not been on anything. Now that my labs say I'm in meno range I can start Femara if I want too. I have a bad case of scoliosis (curvature of the spine) so I am always very concerned about my back/bones. After much research I'm very worried about the damage Femara will do to my back & hips so I asked my oncologist what she recommends? (After all it's been 2 yrs & 4 months without & AI...and I am trying to weigh the risks & benefits for my personal situation.)

She said her job is to tell me what the standard of care is & make sure I know all my options...but she left it up to me. I pressed her some more and said I'd really want your opinion on this, taking into consideration my scoliosis and dexa scan which isn't good.

She said, "Well you know your not the usual case...but if you had been on Femara the last two yrs I would of said to you today....see the Femara is working!" Since I am weakly positive & with my other ortho problems I was hoping for a more direct answer from her. So I am still trying to decide if I should take it? If God forbid "it" came back I would always wonder if Femara would of kept it away...but I'm scared to death about anymore damage to my back.

The fact that they don't know if it will really help me or not... bothers me. (I hate all these decisions.)

Chelee

Chelee,

I am so sorry to hear about your scoliosis. My mother had that. I never realized how bad until she was in the hospital right before she passed away and I was rubbing her back. Her back bone was like a big "S".

I keep hearing that cancer treatment is heading in the direction of personalized care. It can't get there fast enough in my opinion. It seems like the more that is discovered about this disease, the more complicated it becomes.

My first bone density test showed that I had mild osteopenia in the neck of my femur so my oncologist advised me to do some strength training. How does your scoiliosis affect your ability to do some weight lifting?

answering question
 

I am pre-men.... 44 - and didn't have my period for the 9 weeks of chemo but it came right back after I got finished chemo 6 weeks ago.

So, they are wanting to put me into instant menapause and I'm not really wanting to do it ... think women need the hormones in our body - and I am trying to think that the hormones decreasing naturally over time is a much more normal way of adjusting for the body than instantly shutting down the system with drugs...

? thoughts?

Karen

Who gets most of the benefit?
 

Even if only in terms of the health care debate and in terms of the side effects suffered with them...

Given that 80,000 or more are taking these medications for years at a time, and they are not actually cheap, it would be so helpful to know whether or not most of the benefit happens to occur for those who are stage II or stage III, rather than just knowing the total benefit. I'm not trying to say that stage I's shouldn't have the choice, but I am saying that it might help each stage to make decisions with more knowledge.

Does anyone know? It would be so helpful to get some solid data about that. This is a very reasonable question, especially since most patients today are diagnosed with early stage bc.

AlaskaAngel

I posted this before
http://her2support.org/vbulletin/showthread.php?t=38998

but I want to mention that it suggests her2 therapy can upregulate ER pathways. So...your biospy might read one thing now but actual ER activity might catually be increased as you get Herceptin. There's also the issue of the real accuracy of a biospy that is inherently limited to some degree.

Rich, the other side of that coin, which I have posted on more than once, is that Tamoxifen can upregulate Her2:http://her2support.org/vbulletin/sho...eferrerid=1173

Hopeful

Hormone therapy - & AI
 

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

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

I've been taking Arimidex for over a year now.........bone and joint pain SEs are tolerable. My tumor was 90% ER+ and 60% PR+ and Her2++++..........my feeling is that the Arimidex is helping to keep the extra estrogen in my body in check (I'm post-menopausal, but being 30 pounds overweight is the culprit in the extra estrogen.) Even though my onc said that the motor behind the tumor's growth was the Her2neu aberration - I cannot discount the ER+ status. I also read somewhere (sorry but I don't have a link) that Her2 status can change with recurrences.......so I'm following my onc's advice and staying on Arimidex as long as my quality of life doesn't suffer (swimming helps). One other added benefit I've noticed with Arimidex - it has reduced the size of my endometrial lining and uterine fibroid (had these problems before the BC)..........the overload of post-menopausal estrogen is NOT a good thing in my mind!

I've been taking Arimidex for over a year now.........bone and joint pain SEs are tolerable. My tumor was 90% ER+ and 60% PR+ and Her2++++..........my feeling is that the Arimidex is helping to keep the extra estrogen in my body in check (I'm post-menopausal, but being 30 pounds overweight is the culprit in the extra estrogen.) Even though I am told that the motor behind it's growth was the Her2neu aberation - I cannot discount the ER+ status. I also read somewhere (sorry but I don't have a link) that Her2 status can change with recurrences.......so I'm following my onc's advice and staying on Arimidex as long as my quality of life doesn't suffer (swimming helps). One other added benefit I've noticed with Arimidex - it has reduced the size of my endometrial lining and uterine fibroid (had these problems before the BC)..........the overload of post-menopausal estrogen is NOT a good thing in my mind!

I wanted to say that I would soooo completly take any hormone reginine that I was instructed to take. I really think that I have midagating cercumstances. Being 2% ER+ is normally thought of as negative. I have 2 different oncs and one wanted me to go on AL's one thinks diet and exercise and herceptin are the keys to my survival.
What would you do? I know that it is a personal , but out of curiousity what would you do? Thanks for giving 2 poops to answer someone elses problem. I truely appriciate it.

Re: Her-2 and hormone therapy?
 

This is an interesting thread; I hope that it will continue. What studies have there been re: HER2+ cancer and hormonal treatment?

And, Herceptin is such a new drug, especially for early stage Her2+ breast cancer that I cannot imagine there is much meaningful long-term data yet. I'm sure it's a "It's a Brave New World" just looking at the stats of pre-Herceptin short term reoccurance rates vs post Herceptin.

Re: Her-2 and hormone therapy?
 

Also, I would like to add that while doing Herceptin therapy, I think its a good idea to do the (anti) hormone therapy as well (either Tamoxifen or an AI) and shut down both the Her2 receptor and the ER/PR receptor(s). This only helps as it shuts down the receptors you know you have that are positive. The dilemna comes later when Herceptin therapy is over and you are only shutting down ER and or PR. I would risk the hormonal side effects while on Herceptin therapy. However, I want to add that is only my opinion.

Re: Her-2 and hormone therapy?
 

I am also in the camp of, if it is likely to help prevent recurrence, and I can live with the side effects, I'm doing it. I had terrible side effects with Arimidex, switched to Femara and very little issue (some achiness, I take Glucosamine and Chondroitin, that seem to help a lot).

Yes, it sucks to take a lot of pills, but some of us do not have enough of the right stuff, or too much of the wrong stuff, in our bodies, and medication can improve those issues.

Many of us have been diagnosed WAY too young, and I want to do everything I can to keep living without cancer, and then if I have to, to keep living with cancer.

Regarding the idea that "we need hormones," -- no, not if we have ER+ cancer. In fact, the rate of breast cancer has descreased significantly since drs have stopped giving estrogen replacement to women as a treatment for menopausal symptoms.

Everyone should, and will, make her own decision, but I am "in for a penny, in for a pound."

Rebecca

Re: Her-2 and hormone therapy?
 

Hi Rebecca,

The reason for putting people like us on drugs like aromatase inhibitors (like Arimidex, Femara, and Aromasin) or on SERMS (like tamoxifen) is to reduce the production of estrogen, or block it from having much effect.

But the problem is that for some people who take these drugs to reduce the effect of estrogen, eventually resistance to these drugs is believed to develop. It can happen to anyone who is taking these drugs.

The studies we are talking about are being done on patients who have had metastasis. The studies are being done to see if the use of estrogen for a period of time (after the aromatase inhibitors have failed and the patient has developed resistance to the AI's) affects the cancer by slowing it down, and acts to "resensitize" the patient so that the aromatase inhibitors might work again for them.

There is no way to tell whether anyone is developing resistance to use of an AI, other than recurrence/metastasis. It can happen to anyone. If we could tell when it is happening without having to see metastasis, then possibly we might be able to stop them from taking the AI for a period of time, and use a course of estrogen to "resensitize" that person, so that maybe the aromatase inhibitor might work again. It would be helpful if we knew when to stop giving the aromatase inhibitor in patients who have not yet developed metastasis/recurrence, but are developing resistance to the AI. That is what the research is trying to figure out. They are trying this idea out first with patients who have had metastasis, to see if using the estrogen intermittently and then an AI again works well or not.

These studies indicate that the use of estrogen may make very good sense for those people who develop resistance to aromatase inhibitors while taking the AIs.

AlaskaAngel

Re: Her-2 and hormone therapy?
 

Dr. Osbourne out of Baylor published a study awhile back that showed that endocrine resistent cancers tend to be ER pos PR neg or on that continuum. I didn't see that factoid on this thread, so I thought I would throw it in there. The study was in 2006 or 7, and I believe the dr.s first name was Ken. Being triple positive, my doctor pointed this study out to me when i was deciding what to take.

How to Treat Hormone Receptor–Positive, Human Epidermal Growth Factor Receptor 2–Ampl
 

Re: Her-2 and hormone therapy?
 

Karen - I turned down Arimidex because of side effects and am doing Natural Progesterone instead, alongside the Herceptin. Hope I have made an OK decision. I feel I am doing something then. You may like to consider that instead! I get mine from www.progesteronetherapy.com This web site explains very well how Natural Progesterone works.

I am oestrogen receptive. A saliva test revealed I am oestrogen dominent.