HER2+, ER+, PR+ and are taking Tamoxifen. [Archive]

astrid

06-21-2006, 07:22 AM

I went to a lecture last night from a local oncologist who was asked to speak at our breast cancer support group on anti-estrogen therapy for Breast cancer. He asked if there were any questions, so of course I said “Yes, I am triple positive and have recently read that the combination of ER+ and HER2+ is creating Tamoxifen resistance in those patients. I have also heard that sometimes Tamoxifen actually acts like an activator instead of an antagonist. My ONC assures me these are only animal/lab studies and not done on humans. Is this correct?”

His lecture was fascinating. He covered everyone’s questions in his explanation on Tamoxifen and the newer Aromatase Inhibitors (AI). He compared the two and explained why AIs are not effective for pre menopausal women. As, I am pre menopausal there is no standard treatment other than Tamoxifen. The reason AIs will not work for pre menopausal women is that the ovaries and the pituitary gland have feed back to each other so when an AI tries to shut the estrogen down the pituitary gland says “Hey, I need more estrogen and the ovaries respond and create more. This does not happen when the ovaries are shut down either chemically or by menopause because there is no one home to answer the pituitary gland when it demands more so it basically shuts up” AIs are not strong enough to shut down all the estrogen that the ovaries produce. They work on the other systems that create estrogen such as your skin and adrenal glands.

He then went into what is becoming a newly discovered problem and that is the cross talk between the estrogen receptor and the HER2 receptor. He confirmed that these are only animal/lab studies and not done on humans; however what they have found is that when you add the biologic therapy of Herceptin that the Herceptin blocks the cross talk because it binds to the HER2 protein and blocks it from dividing and therefore makes the Tamoxifen effective again. So while on Herceptin, I will not have to worry about Tamoxifen activating residual cancer cells. He also said that the more ER+ you are the more effective Tamoxifen is. I am 16% ER+, so my chances of reoccurrence and DFS (Disease Free Survival) are improved by approximately 16%.

I start Tamoxifen today, and today I feel good about the drug.

AlaskaAngel

06-21-2006, 07:57 AM

The lecture sounds very interesting. Thanks for sharing it and explaining it so well.

I still have a few questions about it. Maybe someone who understands cross-talk better than I do could comment on them.

1. Herceptin doesn't work on some varieties of HER positivity other than HER2. So would there still be a problem in terms of cross-talk and tamoxifen, as long as HER2 was blocked by Herceptin?

2. Apparently Herceptin does not work for a significant number of those who are HER2 positive, or who become resistant to Herceptin. Would there still be a problem in terms of cross-talk and use of tamoxifen for them?

A.A.

dberg

06-21-2006, 06:08 PM

Astrid, thank you for sharing the lecture information. I recently finished my year of herceptin and am taking just tamoxifen now. I have read good reports about coming the two, but what happens when you quit the herceptin?

astrid

06-22-2006, 06:12 AM

dBerg, I do not know what happens when you quit Herceptin. The bad thing is I am not sure that the ONCs know what to do either. This cross talk issue is very new. I have several published papers about this and most of the research is done for post menopausal women in labs and there are no real answers yet. If you are post menopausal, discuss with your ONC switching to an AI and Calcium supplement. If you are Pre menopausal discuss with your ONC Lupron injections to shut down your ovaries and then switch to an AI. I am by no means an expert. Please discuss this with your ONC. As Alaska Angel points out, There are different forms of HER +.

Becky

06-22-2006, 06:39 AM

you are right that if you might also be Her1+ or Her3+ there would be cross talk between the estrogen receptor and a Her1 or3 receptor and that could render tamoxifen resistance even though the Her2 receptor is blocked by Herceptin. However, EVERYTHING loves the Her2 receptor (to cross talk with - what an attractive fellow Her2 is). So, if you have blocked Her2 with Herceptin and then blocked ER with tamoxifen, there is alot of interference on the surface of the cell to deal with - alot of molecules getting in the way for Her1 to have to cross talk to itself (and from what I have read, Her1 likes to cross talk with others and not itself). Also, I went to a presentation at ASCO on ER+ but PR negative. I went because that is what I am and it is pretty unique. If you are PR+ it is better yet since if you are PR- you also tend to be Her2+ (like me) but if you are also Her2 negative, you are probably Her1+ (because only Her2 likes to also cross talk with itself but everything else likes to cross talk with something different) so if ER+ but PR neg - something else is there and if it isn't Her2 then it is Her1 (but some Her2+ are also Her1+ but if they are ER+ as well, they probably are not Her1+ (or only mildly so)). So, this paper said if you are only ER+, tamoxifen does not seem to work (had lots of results) and this is because these women's tumor blocks tested positive for Her2 and/or Her1. These women tended to be younger or African American.

Lastly, some women do not respond to Herceptin because of several factors:

1. they are actually also Her 1 or Her 3 as well so that continues to drive the cancer

2. if they were hormone negative, they may have changed to positive

3. they may have the truncated version of Her2 (no receptor on the outside for Herceptin to bind so the receptor is always on the "on" position - Tykerb could work here as it works inside the cell and not outside the cell).

Becky

AlaskaAngel

06-22-2006, 09:39 AM

One reason I did the poll was to get more of an grasp on just what percentage of HER2's would tend to be premenopausal at diagnosis.

The poll would indicate that there are likely to be a much higher percentage of patients who are HER2 positive and who are going to end up on tamoxifen at least initially, than would be true for the larger group of all bc. At least some patients may be helped into menopause by ovarian ablation (surgical or chemical). Very, very tough choices for those in the 20-30 and 30-40 age range to make.

There seems to be little if any effort made to allow each woman to consider this particular issue when making the choice of treatment. But I have to say that this appears to me to be a very important issue for HER2 positives to consider -- whether or not most medical providers are actively talking about it with patients.

The other point that is important for HER2's to consider is the effectiveness of tamoxifen. My understanding is that in the entire range of bc (i.e., not just HER2's), tamoxifen works less than 50% of the time.

I wonder what percentage of the group of all bc patients for whom tamoxifen does not work "happen" to be HER2-positive, even HER2++. It is interesting that this does not appear to be the case if one is also ER+ and PR+.

My feeling is that this is important enough that there should at least be some effort made to provide some information about this that is specific to HER2 positives in the package insert for tamoxifen.

AlaskaAngel

sabpri

06-22-2006, 11:31 AM

with my weird pathology, as I had 2 Tumors, one that was ER/PR+ and weak Her2 and not amplified (I think that means it was negative!). The other Tumor was Triple Negative with an ***. The * stated that while the Her2 score = 0, a small subset, like 10%, tested Her2+++ and was amplified. No one has really been able to decode this for me, but I think it means the stinker was starting to change from triple negative to Her2+ when we caught it. So basically I am hormone and Her2 positive.

I was 36 at the time and even though I had kids, I went through a lot of infertility to have them and the thought of being denied the ability to have children again by removing my ovaries was devastating. Knowing that I am a major worry wart and that I need to be around for my 2 year old twins and 4 year old daugther, I went ahead and had my ovaries removed so I could take the AI (Arimidex). Everything I read seemed to point to that option being better, and when I tested BRCA+, that made it real easy to decide to do it.

So far it has been 3 months since my surgery and other than some light hot flashes, nothing too bad. The hot flashes were actually significantly worse on chemo than after the removal. Weird!

As my oncologist says, I am taking the "kitchen sink", with Herceptin and Arimidex to cover all bases. I just pray it keeps the monster at bay!

Natalie

panicked911

06-22-2006, 07:37 PM

I was initially given tamoxifen by my surgeon right after my lumpectomy on 10/5 - I am a triple positive 80% er; 70% pr and her2. when I finally saw the oncologist and started herceptain just after thanksgiving - was switched off once we knew lupron shots were working- I was reallt bummed to go off- fel great on that drg - my breast decreased 1/2 a cup size and were muchkess dense - my energy level was way up and th muslce aches ad pains were gone - I was told the AI offered much greater protection against a reoccurance hence arimidex. Would lover to go back on tamoxifen but onc says no - jury is still out - and I am not willing to take the chance

sassy

06-24-2006, 05:44 PM

I was triple positive and premeno until chemo put me in chemopause. Have been taking Lupron shots to keep me there so that I can take arimidex. Was told from the very begining this would be the best course of action for me. Surgeon was oposed to having ovaries out for a number of good reasons which has shown to be a wise decision on his part since mast surgery. Hot flashes almost all gone, estradoil (sp) levels exactly where they want them. Side effects from Arimidex, stiff joints very bad in morning and each time I get inactive. Get better when I get up and move. Seems to be getting better and hopefully will go away all together. Others have told me it does eventually go away. So I have hope I won't continue looking like my teenage sons grandmother instead of their mother!

Sassy

saleboat

06-27-2006, 09:32 AM

This is such a confusing subject, and I've been to three different Oncs for their recommendation-- (and mused about the different alternatives on this board as well.) All three Oncs have recommended Tamox-- I sure hope it is doing its job. I was ER+ (95%) and PR+ (90%) and am still very pre-menopausal.

For those who are on Tamox, here is a link to a study that was recently done. I am getting a second opinion on this to see if this might be relevant to me. My main Onc hasn't heard of it and doesn't seem that interested in it, but it has been gnawing at me.

http://www.eurekalert.org/pub_releases/2005-12/mc-mcr121405.php

Jen

lisahammo

07-02-2006, 10:24 PM

I was not Her 2+ when first diagnosed, and was put on Tamoxifan. When I had my recurrence, I was Her 2+, and my oestrogen levels had gone up, so I was taken off Tamoxifan immediately.

Lisa

R.B.

07-06-2006, 08:14 AM

There have been quite a number of posts on the subject.

You can search by clicking on search above on the purple bar and entering the term you are searching for.

There is link to a trial which suggests tamoxifen might be counter productive for certain groups.

There is another suggesting concerns fro those with a particular gene.

If you find anything of interest you can always print it and show it to your onc.

RB

Chelee

07-06-2006, 10:55 PM

Alaska Angel, This IS a very interesting thread to me. Especially since its time I start on Tamox or femera? (sp) One thing your brought up that I think is really important...is if our medical providers are taking the time to talk to use about it? Mine hasn't yet...but I will be bringing it up to her soon. I want to discuss this issue a bit with her before I just take whats handed to me.

I know several months back when I was still doing chemo, my onc mentioned real quick to me that once I was done with chemo I would be starting Femera. I just said "OK". I didn't even know what it was for at that time?

But NOW I am done with chemo...so this is a topic I am so interested in. My onc wants to put me on the femera as I mentioned...but I had went to a 2nd opinion at a larger cancer center a couple weeks ago...to discuss what has been done and what they think I should do at this point?

They have been there over 30 years...much longer then where I am at now. That place is all about cancer. What makes it hard is my current oco doctor says femera for me...and the OTHER cancer center with the 30 years plus says the one thing they WOULD change in my treatment plan is they REALLY feel I was pre-meno until I was PUT into chemo pause. (Which I agree.) So their choice would be Tamoxifen for me.

She said the Femera is really for post-menopausal women. So NOW I am confused and don't know WHICH one I should take? Thats why I LOVE this thread and anything on this topic. As some know I am stage IIIA, Er & Pr positive, her2/neu 3+++...positive nodes. So I WANT the best drug I can get to stop any recurrances. This is a very important issue I must decide on soon.

I found it also interesting that the way you understand it is that tamoxifen works less then 50% of the time in bc....not just her2. I didn't know that either...thanks for the info. That makes it even MORE important to read up on all of this.

Astrid, I also found your post VERY interesting also! Thanks for taking the time to go over what was said at that lecture and explaining it so well to us. Especially since my 2nd opinion onc at the other cancer center said I should be taking Tamoxifen. Decisions, decisions!

As Saleboat said, such a confusing subject. I agree!

Either way...great thread!

chelee

AlaskaAngel

07-07-2006, 09:11 AM

I do hope the extensive discussion about choices in treatment is more helpful than confusing or frightening.

It is hard to know what is best for treating humans who are so strongly premenopausal, and harder still to figure it out when you are one of them... especially since there are so many variables that come with each person's situation. The choices are difficult for HER2's especially because as a group we are younger and have to give up a lot more QOL to live longer.

If the average age of bc has been assumed in general to be 61 (which is not exactly child-bearing age) then there would have been a tendency to just see tamoxifen as protection for most patients even though that may not be the case for a subset of patients that happen to be primarily younger. Tamoxifen has a much longer documented history than the AI's. Even just 5 years ago the AI's were not available except in clinical trials.

Because testing for HER2 has not been done across the board until recently and there have been problems with accuracy of testing, it has taken a while for the questions about tamoxifen for HER2's to be considered.

As I understand it, taking an AI like Arimidex or Femara or Aromasin is useless if you are not menopausal, but is more effective than tamoxifen if you are menopausal. There also seems to be some information to the effect that tamoxifen may not be a good choice in particular for HER2's. The result is that a lot of HER2's who are young enough to still be possibly premenopausal are going for ovarian suppression/ablation so that then an AI can work for them.

Now that Herceptin is an option for HER2's, do we even know whether a course of that in combination with chemo is enough to keep cancer at bay without any SERM like tamoxifen or AI for those who are HR+?

A.A.

Bev

07-07-2006, 08:34 PM

Great thread AA. Looks like we'll have to write the book on this one too. BB

snoopy

07-08-2006, 01:35 AM

Excellent thread - very helpful to read the thoughts and opinions of other.

Thanks to everyone who has contributed.

panicked911

07-08-2006, 07:43 PM

I am also a triple positve ( er 80% and pr 70) and saw my main onc. agaion this week - again had the tamoxifen discussion - and she was adament that for her 2 - Ai's was the best solution - she did not rule out switching me to tamoxifen in a few years but said at least in the early going and until I pass the 2 yr, 3 yr and 5 yr mark NED she was strongly against switching.

The only reason this came up again is b/c of all the muscle/joint aches I have been having - she thinks it might be from the Lupron shots and herceptain. We agreed to wait to make the swutch until i am done with herceptain in November . She sid ti taken 3 months for it to leave your body. So by February we will see how much of of the side effects are herceptain related or due to arimidex and lupron.
I also told her about this sight and the poles we have been conducting ( she heads clinical trials for a major breast cancer center in NY) and strongly beleives that herceptain is ot the cause of the side effects many of us are experiencing. For me the most frustrating has been the "brain freeze or fog" and the inability to get words out - this became more pronounced when I went to thr 1x every three weeks of herceptain.
Would LOVE to go back on tamoxifen - felt great on it but based on what i have heard and read deathy afraid to do it...

dilly

07-29-2006, 09:13 PM

and it's a bear to read. It's a retrospective study of Her1, her2, er, and pr status and tamoxifen resistence in women treated with tamoxifen only
by Arpino, et. al.

http://jncicancerspectrum.oxfordjournals.org/cgi/content/full/jnci;97/17/1254

In summary, our findings support the hypothesis that loss of PR in ER+ breast cancer is a surrogate marker for increased growth factor receptor tyrosine kinase activity that causes lower PR expression and tamoxifen resistance in some patients. The results raise the possibility that overexpression of only HER-1 and/or HER-2 affects tamoxifen response substantially only when PR is negative. If PR expression is maintained, perhaps signaling through the HER family pathways is low despite overexpression of the HER receptors themselves. Although response to trastuzumab has not been shown to vary by ER status, if the hypothesis that lack of PR expression is a reflection of active signaling in the HER family is correct, then the response to trastuzumab or other small-molecule HER-2 inhibitors might be different in the PR+ and PR– subsets, an idea that could be explored in ongoing adjuvant clinical trials. Finally, if the link between PR negativity and high growth factor receptor signaling can be confirmed as a cause of tamoxifen resistance, then therapies targeting the growth factor pathways in combination with tamoxifen should be investigated in patients with ER+/PR– tumors in future clinical trials.

saleboat

08-01-2006, 09:13 AM

Dilly--

Thank you for posting that link. I hadn't seen that article in full. It puts my mind at ease a bit. I was 90/95 ER/PR and I'm on Tamox.

Jen

Chelee

08-08-2006, 10:20 PM

I am lost on what I am suppose to be on? My onc doc wants me on femara....but yet I went for a 2nd opinion they said they really felt I was pre-meno and I should be on tamoxifen. I really feel I was pre-meno also. So why does my onc doc want me on femara? I don't know what to do? The other place I went to has been treating cancer patients for so many more years then my current place.

They really stressed the tamoxifen for me. I did have a menstral cycle until they shut me down with the herceptin and chemo. I don't know what to think. But I sure enjoyed reading all this. Some good reading here. Very informative.

Chelee

astrid

08-09-2006, 04:35 AM

Chelee, your estrogen levels can be checked and then you will be sure if you are pre menopausal or not. It is a blood test.

Estogen levels for Pre menopause is:

Follic phase (first days of an ovulatory cycle) - 27-161

Luteal Phase (last fourteen days of an ovulatory cycle, associated with progesterone production from the corpus luteum) is 33-201.

Post menopausal is 5-38

So if you are below 27 there is NO doubt you are post menopausal.

Becky

08-09-2006, 05:38 AM

Chelee

How old are you? Were you menstrating regularly before chemo? I am asking because I was 45 when diagnosed and was still menstrating regularly. Chemo shut me down (I had 2 cycles then stopped). When it came time for a hormonal, my onc at the time wanted to put me on Tamoxifen which I did not want to take because I am only 50% ER but PR negative (and being Her2 positive, this was not a good combo for me - plus, the trial with Herceptin did not come out yet so...I did not have Herceptin yet and without it, Tamox was not a good choice as it might be right now.)

I got the bloodwork done too and it showed I was postmenopausal too. But that changed. I was on Arimidex not quite 2 months and I got my period back. This can happen and an aromatase inhibitor can help that happen if you are "on the edge". Femara has been used off label to assist with fertility treatments. So, make sure your estradiol levels are checked all the time because this situation can reverse itself and you can menstrate again (and will have no ER/PR protection). You might want to consider Tamoxifen while on Herceptin and start testing estradiol while you are nearing the end of Herceptin treatment and switch to an AI then (if you test right and still haven't gotten your period in the meantime).

I ended up getting my ovaries removed to use Arimidex. For me, it was the only sure way to become postmenopausal.

Hugs to you

Becky

astrid

08-09-2006, 06:02 AM

I am now 48 was diagnosed at 47. I was menstruating off an on though chemo. My last menstrual cycle was in June. My estrogen levels show me in chemo pause. I am going to have them checked again in October. I want to enter a clinical trial to compare ovarian function suppression (by triptorelin, oophorectomy, or ovarian irradiation) in combination with tamoxifen vs ovarian function suppression in combination with exemestane vs tamoxifen alone in patients with endocrine-responsive breast cancer in treating Premenopausal Women with Hormone-Responsive Breast Cancer.

I have until November before I am no longer eligible as I will have been out of chemo too long. Currently I am taking Herceptin every three weeks and I am on Tamoxifen. If I do not join the trial I will stay on Tamoxifen while on Hercerptin and then I want to rethink my options and have my levels checked again. I do not want to have my ovaries removed as long as I am in chemo pause there is really no need and at 48 my levels will continue to drop. If I am still in chemo pause in October then I will most likely stay menopausal. I stopped Chemo in mid March and have not had a cycle for two months.

mindersue

08-09-2006, 10:00 PM

I finally made my decision on which hormonal therapy to get. After much debating, researching, and info-gathering from this site (THANK YOU ALL!), I decided to get Lupron and Aromasin. Today I got my first shot of Lupron and I'm happy to say it didn't hurt at all!

My gut feeling all along was shut down the ovaries and take an A.I. I read some things where shutting down the ovaries is effective in itself, and in post-menopausal women, AIs are more effective than tamoxifen. My gynocologist ALMOST scared me into taking tamoxifen, stating that severe menopausal symptoms could wreck my quality of life. She called me back the next day after discussing it with 2 other gyns, and said that each had different opinions and that ultimately it was my choice. She agreed that since I was already having menopausal symptoms from chemo, shutting down my ovaries may not affect me as severly as she had thought.

I decided on the shot vs. removal only because it buys me some time to "test" menopause and Aromasin. If all goes well I will eventually get my ovaries removed.

Having said all of this, it still isn't proven that Lupron + AI is the best way to go. I could've been in a clinical study that would answer the question of which hormonal treatment is best for premenopausal women. I really would have loved to be a part of that. But my gut wouldn't let me be placed randomly into a treatment arm.
Thank you again to everyone who has participated in this discussion. It was a tough decision and this board helped me tremendously.

Chelee

08-10-2006, 12:00 AM

Astrid, Thanks for the information on the blood tests to check the estrogen level. Does this still work if we were put into chemo pause and I am still taking herceptin?

I want to be prepared for my next appt with my oncologist as this is something we haven't really discussed yet. She just told me matter of factly I would be on femara. But after going up to the larger cancer center for the 2nd opinion and being told to do someting totally different...I really need all the information I can get on this so I can ask the right questions and do whats best for me.

You guys have been so much help. Thanks again Astrid! Its funny how my onc doc never tells me any of this stuff. Thank GOD for all of you.

Chelee

Chelee

08-10-2006, 12:10 AM

Becky, I was 48 when this all started and yes I was still having my cycles. Now they were getting LIGHT, and I did notice I missed maybe two cycles that year. But I still had one about every 28 days. However I do feel I was getting close to menopause. But it did stop the minute they started me on chemo and herceptin. So I have to agree with that other cancer center I went too..it would seen I WAS perimenopausal.

I noticed you got your blood work done on this too. My onc doc never brings it up? She WILL now. lol I am going to be more then prepared. My onc is so dead set on femara? Yet the other place mentioned tamox and even Lupron shots if necessary.

Thanks for all the great information Becky...much appreciated. I had no idea just how much of this I did NOT know. You guys are way ahead of me. This is serious business so I want and need to be prepared. You guys have been a big help.

Chelee

firstplace

08-25-2006, 09:42 PM

I was pre-menopausal and her2 amplified 8.6 + ER+HR,PR+ I originally was diagnosed with dcis negative for all the above. During my 2nd lumpectomy, they found invasive less than a centimeter that was in my tissue, and none of the lymphnodes. They found it by accident, but I know it was God's hand guiding my surgeon's knife to save my life. They didn't even know what they had gotten and they had clear borders. They recommended radiation, not knowing my FISH report(I know I got that wrong) was 8.6 amplified. This resulted in my tissue being sent for the oncotype DX which is fairly new. It showed I had 40% chance of recurrence with tamoxifen and radiation alone, and 27% with chemo and radiation. Only thing is they didn't specify what kind of chemo, how long, and I don't remember if herceptin was in play with those odds. Either way, I had to wait until January to start my chemo after being diagnosed with cancer on 9-22-05. I went into chemically induced menopause, although I spotted lightly in January for a day or 2, then nothing since. As with the rest of you, my doctor did not give me any options and I was under too much stress at the time to know that i had options. My surgeon told me to trust the oncologist! Well, I didn't get who he recommended because of availability but they were out of the same office and I was told she was a good doctor who i could trust. My mistake was not getting a second opinion. She put me on Adramiacin/Cytoxin for 4 rounds every 3 weeks. I noticed alot of people were getting taxol and all the research I found showed that if you got A/C you got Taxol after it for 12 weeks. She told me because my tumor size was so small I didn't need it. I went along with it and went for my radiation and started herceptin during the radiation. Herceptin with the Adriamycin drug is very dangerous when combined and may still hurt me. Well, my doctor never seemed to have time to answer any of my questions. I am anemic and was anemic since 2000 and nothing helped because if I took iron i was constipated. Most of you are experiencing loose stools, I am having constipation from the herceptin and Taxol, or just one, but which? The last time I saw my old oncologist, she told me to hurry up and get in my gown because she didn't have alot of time today. That was after waiting for 6 weeks to see her when she didn't have time the previous time either. I would say she spent around 15 minutes with me since i became her patient. I asked for a copy of my records at the front putting down my reason as possibly looking for another doctor. I had no idea how I was going to find someone I trusted not connected to the same office. I had a call from the hospital to confirm information about my medical records and ended up getting the name of a doctor who dealt with anemia issues. I didn't even know my onc. was a hemotologist! The doctor saw me right away, spend 1-1/2 hours with me and then as he was reviewing my records, he asked me if I really didn't get Taxol. I said no, was it too late? He said it is never too late. I think I may be the only one to start Taxol after being done with radiation and 3 months past chemo before starting again. My hair started growing back again, and I was told I would lose it again. He made me wait 2 weeks before I could give him my answer. It was absolutely yes. How could I face my kids if I had not done everything I could to prevent it when i had the chance if it comes back. Before herceptin, getting her2+ was considered a death sentence according to some of my other doctors. I don't think it is that bad, but it sure scared me enough. The tamoxifen can cause uterine cancer ovarian cancer. I don't remember the stats now, but Herceptin causes one and Tamoxifen causes another. If I get a hysterectomy after my chemo, my ovaries will be out and I can go on a safer drug than tamoxifen and the risks will be less. We need to pray for each other since the her2 can travel un-noticed. I feel we need to do all we can if we can. I know I don't need my ovaries or my vagina or uterus anymore, and I can do something about that. I am already having hot flashes and mood changes and vaginal dryness making sex not as enjoyable, so this is another road to travel. If anyone has any more information for me, please let me know. Also, I wasn't even given the option of a mastectomy probably because it didn't go to my lymphnodes and they think I am still young.(46 till October)but I would have liked to know my options. I have 9 and 12 year old boys at home who are very active. It hasn't been easy as I am sure it hasn't been on any of you.

There is a great book out there called "A Reason For Hope through your fight with cancer." I might have the title wrong, but it really helped me.

One thing I have learned is that fear comes from lack of knowledge. That is why this sight is so great. We are learning from each other.

One more thing, question for all of you. If your cancer returned in either form, dcis or invasive, would you have your breast removed, one or both, or neither? I have had 2 lumpectomies and 2 biopsies off my size AA breast.
I go for my followup mammogram as soon as I schedule it and I had calcifications they had me come in for a second view in June for, and now I am feeling pain. It probably is the non-invasive, but I am really tired of this.

Hoping for help,

Firstplace(Jesus is Firstplace, not me).

firstplace

08-25-2006, 09:44 PM

I don't know if my message is out there or not. This is Firstplace, trying to send my reply

astrid

08-28-2006, 05:43 AM

First place, I think it is good that you switched ONCs and that you are now taking Taxol. I participated in a clinic study. This study is only for lymph node negative patients. If I was node +, my chemo treatment would have been 4 rounds of doxorubicin (Adriamycin - A) with cyclophosphamide (Cytoxan - C), and 4 rounds of Paclitaxel (Taxol) T. So, this clinic study wants to see if node negative women like me who do not need aggressive chemo treatments will do better with A or T as dose dense standalone chemo treatments for 4 or 6 rounds. My randomization gave me 6 rounds (12 weeks) of Taxol (T). I was very happy with my randomization because A is very hard on you heart and is the chemo that really makes you nauseated. Taxol is hard on your fast growing cells like hair and nails but they grow back. Taxol is also used more commonly for advanced Cancers that have spread. I was scared to be on Adriamycin because I am now taking Herceptin for a year. I started Herceptin after my radiation. Herceptin is an antibody drug that can be hard on you heart but has no real side effects. Herceptin is a fairly new drug and the long term effects on your heart are not yet fully known. If Herceptin had been around 10 years ago when my sister died of Breast Cancer she may still be with us. My sister had a mastectomy. Having a mastectomy does not improve your survivability or improve your chances for a distant reoccurrence. If you have a primary reoccurrence in the same breast that was radiated a mastectomy is necessary as they can not radiate the skin twice.

Also when you are truly menopausal, you can switch to an aromatose inhibitor and off of the tamoxifen to avoid risk of uterine cancer. The use of tamoxifen, an anti-estrogen drug, is commonly used to prevent a cancer recurrence in women with ER+ breast cancer. In many clinical trials, tamoxifen has been shown to decrease the risk of a cancer recurrence and increase overall survival in women with breast cancer that grow in response to the female hormone estrogen. However, the long-term use of tamoxifen is also associated with an increased risk of developing uterine cancer. According to a recent study published in The Lancet, the benefits of a decreased risk of a recurrence of breast cancer, attributed to the use of tamoxifen outweigh the risk of developing uterine cancer. The newer AI drugs do not have the same risk. AIs can not be used on premenaposual women unless the ovaries are shut down. The reason AIs will not work for pre menopausal women is that the ovaries and the pituitary gland have feed back to each other so when an AI tries to shut the estrogen down the pituitary gland it says “Hey, I need more estrogen” and the ovaries respond and create more. This doesn’t happen when the ovaries are shut down either chemically or by menopause because there is no one home to answer the pituitary gland when it demands more so it basically shuts up. AIs are not strong enough to shut down all the estrogen that the ovaries produce. They work on the other systems that create estrogen such as your skin and adrenalglands.

You do not have to have your ovaries removed if you shut them down and if you are truly menopausal the ovaries will be shut down.

As far as needing your vagina, I am 48, on Tamoxifen and still in chemo induced menopausal and had GRAET sex last night. Sex is important for a healthy marriage and a healthy marriage will make you feel happy. Please do not give up on sex.

kat in the delta

09-01-2006, 01:40 PM

I am POST- menapausal and am taking Tamoxifen after all chemos, rad. and 1 yr of herceptin -----because the aromatose inhibitors affect your bones more and I am borderline osteoporosis-- ---------------Kat in the delta

firstplace

09-01-2006, 07:05 PM

Did you have a hysterectomy?

kat in the delta

09-02-2006, 07:52 PM

Yes, but I still have my ovaries....My onc had me do a hormone test to see if I was POST menopausal & I was.

Joy

05-02-2007, 01:21 PM

I am triple positive and after initial stage I dx I began tamoxifen as I was premenopausal. I did 2 years of tamox after A/C and rads (we did not know I was her2+++ at time-FiSH proved that upon re-dx). I quit tamoxifen at re-dx because obviously it did not prevent recurrence and it was VERY advanced (although I truly believe I was more advanced viscerally at initial dx and we didn't check). When I did AI's I did zolodex as I have ovaries of steel. Now I've been in chemopause for 2ish years again and who knows after all the chemo and several years older (I"m only 39 though-just sayin') if I will ever be pre-menopausal again or not.

I consulted with an OB/GYN about an ooph., but he wanted to yank everything out and I freaked and ran away. He did not know he was dealing with home birthin', childbirth educator, midwife asst, slighlty cranky-feminist gal.

Lala

05-18-2007, 09:14 PM

Interesting topic for sure.
I tried Tamoxifen but it failed for me. The last time I looked for trials using tamoxifen I ran accross a trial at Dartmouth - Hitchcock. The criteria for the trial was interesting ; If you were stable on tamoxifen and then failed this trial is for you.

The drug being tested was Lapatinib. Interesting thought that Lapatinib may help turn the hormone receptor back on.

Here is the trial weblink
http://clinicaltrials.gov/ct/show/NCT00225758?order=6

AlaskaAngel

08-11-2007, 01:33 PM

More info about resistance to tamoxifen (no mention of any relationship to HER2, so apparently a new discovery of more resistance among the entire group with bc -- or at least, not eliminating those who are HER2... so far):

http://explore.georgetown.edu/news/?ID=26261

kat in the delta

08-11-2007, 01:54 PM

Hey,
I am ER+ and now on Tamoxifen, after all surg.chemo,and rads..and some zometa..
I am PR -
I am Her2+++ by FISH.
DID I answer all ?'s
Kat in the delta

dorinda

08-11-2007, 02:26 PM

gooodness all this is confusing to me but i want to learn. becky, i too am her2 er + pr- . DOES THAT MEAN HORMONAL DRUGS MIGHT WORK ON ME. RITE NOW I AM JUST ON TAXOL AND HERCEPTINE. does her2 - mean you are not her2. ALSO I SEE her2+++. WHAT DOES THAT MEAN. I QUESS I SHOULD GET MY PATHOLOGY REPORT AND SEE WHAT THAT GIVES ME . IS THAT THE RIGHT THING TO DO. I HAVE ALOT TO LEARN AND HAVE SDISCOVERED THE RITE PLACE. THANKS DORINDA

Bronny

08-14-2007, 05:51 PM

I am ER/PR+, HER2 +, pre menopausal and about to start tamoxifen.

beccarlw

08-15-2007, 12:13 PM

I Am Er+, Pr+, Her2+ Currently On Tamoxifen And Clinical Trial For Tykerb/lap/- I Was Given The Choice Of Lupron Injections, Or To Remove The Ovaries.....i Am Scheduled To Have The Surg. On 9/19/o7. Much Love, Hope Prayers And Peace, Becca

kat in the delta

08-15-2007, 09:46 PM

Hi,
Her2 is either positive or negative...You can have your Onc. look at your Biopsy report and YOU need a copy--make more...
There are 2 tests to tell if Herceptin will even help you and if you should even bother to take Herceptin.. =One is the F.I.S.H. test.... The other test is the ICH test,but the ICH is not 100%(done by human eyes ) looking at amount of stain on speciman ,which may appear to whoever is looking at it,, Her2 ++,or Her2+++(more heavily stained), or no staining= Her2- .
You still need to demand a F.I.S.H. test.to affirm you are definitely Her2(positive)..or Herceptin would be a waste of time. My surgeon is very good, but my onc was just going to go by the ICH test, ONLY.. My Surgeon said to tell him to send my biopsy off to have a FISH test run on it also. This is what I demanded of my ONC, and he finally did send it off ..
My FISH TEST came back positive. The FISH test is the only true test which would show HER2+++ ,and can be done after the first ICH test. I am also Er+, and PR- like you. If you are even slightly ER+ like me, then after all the IV chemos...you will need to have a test run on you to see if you are Pre or Post menapausal.. This would then determine if you would take Tamoxifen, ?, or one of the Aromatose Inhibitors(3, so far)...to decrease the risk of your cancer returning. But, other factors- as low bone density - are considered to determine the correct RX to stop your body from producing more Estrogen which is only feeding the cancer and will make it possiby return.
If you are Post but are at risk for Osteoporousis..your Onc. may try Tamoxifen instead of the A.I. I was Post. by a blood test, but because I am on the border of osteop. , my Onc is giving me Tamoxifen.. I may go and have a 2nd opinion on this, and because He wanted to put me on Zometa(IV) every 3 months... For the PR- I am doing nothing, and do know if anything is done for those with a positeve PR status... I got finished a yr ago with surgery, rads. all chemos , taxol with herceptin and then 1 yr. of only herceptin.. and had started Zometa every 3 months with Tamoxifen...but will check this out.... Kat in the Delta

ahooper

08-30-2007, 03:26 PM

At 36, diagnosed with ILC, triple positive. Had lumpectomy and complete hysterectomy, along with Tamoxifen and 1 year of Herceptin. After 3 years, I have metastases to the bone, so all of the above were apparently ineffective for me. On Tykerb now since June; not too pleased with the side effects.

kat in the delta

08-30-2007, 05:01 PM

I just read something people are getting when Tamoxifen does not work...will look for it at HealthTalk.com and othe places. Look at Clinical Trials too and get several opinions.. Let me know how you are doing and feeling.... will do research for you................Keep in Touch,
Kat in the delta

kat in the delta

08-30-2007, 05:04 PM

Are you getting Zometa for your Bones now ?? It is the newest Biophos. IV for your bones...... I was getting it every 3 mos....but now less often... Let me KNOW... What are the side effects you are getting from the Tykerb??? . Oncs don't seem to tell you all the BAD side effects you can be Left with..sometimes for a short time..and some for a Lifetime... I asked for and got a Large Binder of Info from the LIVESTRONG and it does tell you what Happens AFTER you get certain Chemos...I struggle with Chemo Brain, and Neuropathy... No one in my family WANTS to help me or try to UNDERSTAND and take me like I am NOW..... So What side effects are you getting from Tykerb and How did you find your Bone METs..... RSVP ---- Kat in the delta

ahooper

09-01-2007, 10:46 AM

On my periodic visit to onc in April, I griped about some pain in my shoulder; immediate pet/ct. This showed a very suspicious black hole in the area, and open biopsy confirmed the met. My husband and I had been having some issues, and this whole round of tests just put him over the edge. On June 8, he took himself out with a .44 magnum revolver, so I've had to deal with a lot by myself.

Yes, I get Zometa (the osteoperosis drug) infusions once a month to strengthen the bones and help keep more rogue tumor cells from settling in. I have a hole in my shoulder blade that we hope will also fill in eventually. The Tkerb makes me tired and nauseaus, and I have a white rash over my face and on my back where I had radiation. Very unsightly, and I don't know how long it will last. Half the doc's job is to not freak you out, and they've all been stepping very lightly around me for a few months now. I know I'm suffering from "recently-widowed-with-incurable-cancer-and-about-to-be-40" brain. Short term memory is shot. (Pun!) So I make a lot of notes and take a lot of photos to keep myself up to date on my own life.

My family and friends have been AMAZING. They take so much better care of me than I ever did. There is someone assigned to every day of the week; my stepmother cleans for me on Mondays, my aunts cook for me Tuesedays and Thursdays, my brother mows the lawn Saturdays, and my girlfriend is assigned to getting me drunk every Friday!

Most people want to help, but don't know what to do, and you don't know what to ask from them. Just have the bossiest person in your family make a weekly schedule and hand it out! What's the worst that could happen? I feel like I've already seen it.

Unregistered

09-13-2008, 01:23 AM

Hello,
first of all thank you to Joe, Christine and to all of you for this wonderful website which has helped me so much in the last two years.
I'm an Italian woman. My breast tumor was her-2 positive, ER+, ER-. I've decided to write to inform all the pre-menopausal women who are worried about taking tamoxifen that professor Aron Goldhirsch told me that there is no risk if Tamoxifen is associated to triptorelin (whose effect is the same as oopherectomy). I think you can trust Goldhirsch ... he is an excellent oncologist who works at the European Institute of Oncology, a hospital conceived and directed by Umberto Veronesi, the founder of breast conserving surgery. Goldhirsch also told me that when he is sure I've become menopausal I can switch to an AI.
Kisses and hugs to all of you!

I have pasted the abstract of the study he suggested me to read:

Journal of Clinical Oncology, Vol 21, Issue 3 (February), 2003: 453-457
© 2003 American Society for Clinical Oncology

HER-2/neu Overexpression and Response to Oophorectomy Plus Tamoxifen Adjuvant Therapy in Estrogen Receptor-Positive Premenopausal Women With Operable Breast Cancer
Richard R. Love, Nguyen Ba Duc, Thomas C. Havighurst, Syed K. Mohsin, Qian Zhang, David L. DeMets, D. Craig Allred

From the Departments of Medicine and Biostatistics and Medical Informatics, University of Wisconsin, Madison, WI; Hospital K, Hanoi, Vietnam; People’s Hospital of Haimen City, Haimen, Jiangsu, China; and Department of Pathology, Baylor College of Medicine, Houston, TX.

Address reprint requests to Richard R. Love, 610 Walnut St. 256 WARF, Madison, WI 53726; email: rrlove@facstaff.wisc.edu.

Purpose: Studies evaluating the relationship of HER-2/neu breast tumor status and response to adjuvant endocrine therapy have reached conflicting conclusions about resistance of HER-2/neu-positive tumors to this treatment. We studied 282 patients participating in a randomized controlled trial of adjuvant oophorectomy and tamoxifen or observation who had estrogen receptor-positive tumors and whose tumors were evaluated for HER-2/neu overexpression by immunohistochemistry.

Patients and Methods: Univariate and multivariate Cox proportional hazards regression models and Kaplan-Meier disease-free and overall survival estimate methods were used.

Results: HER-2/neu overexpression was a negative prognostic factor for overall survival. In univariate analyses, in HER-2/neu-positive patients, the hazard ratio (HR) for disease-free survival (DFS) with adjuvant endocrine therapy was 0.37 (95% confidence interval [CI], 0.26 to 0.89); for HER-2/neu-negative patients, the corresponding HR for DFS was 0.48 (95% CI, 0.31 to 0.71). The overall survival (OS) data were HR=0.26 (95% CI, 0.07 to 0.92) and HR=0.68 (95% CI, 0.32 to 1.42) for HER-2/neu-positive and HER-2/neu-negative patients, respectively. In multivariate models, the P values for tests of interaction of HER-2/neu status and response to adjuvant endocrine therapy were 0.18 and 0.07 for DFS and OS, respectively. Kaplan-Meier DFS and OS curves and 3-year DFS estimates were consistent in showing greater benefit to the HER-2/neu-positive subgroup given adjuvant treatment.

Conclusion: HER-2/neu overexpression does not adversely and may favorably influence response to adjuvant oophorectomy and tamoxifen treatment in patients with estrogen receptor–positive tumors.

katcdale@yahoo.com

09-13-2008, 03:59 AM

I agree with HERCEPTIN being the Culprit of PAIN.......and it lasts longer than 3 mere months...after taking it....looking at it's long-term effect.
IF you took it for a year and possibly longer than 1 yr... as I did..you may also be hurting all over, or have HEART damage, or you may likely have a side affect within or in the next 15 years. This AFTER-CHEMO stage is 10X's worse than during treatments. It's when every cell in your body has been blown to
hell-o... !!!
Yes, we are victims of a WAR on Cancer.
Is there really a reasonable use in these unknown weapons which were fast tracked in the first place??? DID anyone question their long term consequences?? Have you noticed the new terms that seem to appear?
There's= chemo-brain, long-term effects, lasting effects,....
It's like these new words are a cover-up for any damage done to prevent a law suit....
Then, the maker(S) saying it was the Adriamycin.!! THAT "A." drug is/was the main culprit of any problems in combination with this and that. Just trying to lead all away from "THEIR MISTAKE(S)."
I think some researchers get Money for Nothing when they say they are looking for THE /A Cure for Cancer. When has an MD or an Oncologist ever said to you there is a CURE for Cancer ??
How long have they been looking??
How much money has been spent??
What kind of research is truly worth doing???
What are the stats on Taking Herceptin and NOT taking it ?? What is the long term Difference?? Look for that answer...
See if ANY ONC. will say there is a CURE for Cancer.. Do you really think your surgery removed any and all of those smaller-than-microscopic cells??
I think that More money should be spent on PREVENTATIVE measures and to reach out to help, mentally and/physically, those who suffer with side affects. Use it to inform others "Before anyone gets Cancer", or on helping those who have become disabled because of chemotherapy, or for "Preventing it's return Attack"!!!
I am, all, for looking at Nutrition, Exercise, a more wholistic approach, Chinese Medicine,...etc. IS there a need for MORE NEW Unproven DRUGS ?
Personally, I do not EVER want CHEMO AGAIN!! I don't even trust being
X-rayed, anymore --just stimulates cancer to form/grow.
... Ultra sound seems O.K.

Can ANYONE HERE RELATE??

ANYONE SEEN THE BOOKLET/book "CANCER WAR"!!pdf
It's like I had written most of it when I found it by accident. It was written by an MD who is in remission of Cancer, or at least WAS in remission, not cured.
My mind and body have been damaged because of these
miracle-CHEMO, CANCER-FIGHTING, Fast-Tracked-too quickly Approved DRUGS. No one in my family understands this about me. They want to put me on an antidepressant thinking more drugs will help. If they cannot accept me like I am now..as I cannot remember well and cannot get anywhere on time and cleaning my house flew out the door, my feet get numb, and my circulation is poor....,. then THEY can Help me do things, or they need to TAKE AN ANTIDEPRESSANT-maybe 2 or 3 ,Themselves!!
They really do not Want to understand how this has affected me, or to Believe I even had anything wrong with me. But ....I was part of the
" WAR ON CANCER ".......... I made it through the line of fire. Cells blown apart .... You think I am stronger at this moment? I am crawling out..
THIS IS WHEN THE TRUE STRUGGLE for my life and your LIFE BEGINS....
---"A WAR WITHIN"
I am a wounded soldier.. When did my WAR BEGIN ??
AFTER all that radiation and chemotherapy is when MY REAL BATTLE started. Each cell blown to bits. I struggle to build new healthy cells. I eat organic fruit and vegetables when I can. I struggle to exercise each day, but some days I miss. But, I am still trying to come out of this fog of WAR.. It helps to come here to my cheerleaders.. We cheer each other....
YOU, WHO KNOW ...YOU ARE WITH ME EACH STEP...on the Road to recovery. Take along some fruit, some vegetables, or drink their juice. LET's Trod ONWARD to VICTORY...!!!
GET OUT OF THAT CHAIR, or try to move, if you are able.
We Help each other Here. We take each other's hand...........
So, if someone falls .. there is always someone here to Pick you UP!!
IF you can't walk, we'll carry you !! Together we are strong.
HOORAY for the HER2 site !!!
We are altogether here. This is where we meet. We are all holding out a hand to help, or to be helped. We are making a circle of friends !!
THANK YOU TO JOE AND CHRISTINE for making a meeting place on our way. " No one is ever alone " ........

-------KAT in the delta