HER2+, ER+, PR+ and are taking Tamoxifen.

astrid · 06-20-2006, 06:07 AM

Was wondering how many pre menopausal women are HER2+, ER+, PR+ and are taking Tamoxifen?

Sammy · 06-20-2006, 07:49 AM

I am her2+,PR+,ER+ and pre menopausal . Not taking tamoxifen though.

karenann · 06-20-2006, 08:44 AM

I am triple + and I was pre menopasal before chemo and now it seems I am in menopause. I am not taking Tamoxifen; I am on Aromasin.

Karen

Susan2 · 06-20-2006, 01:27 PM

I was triple positive and took Tamoxifen. However, I'm finished with my 5 years now.

dberg · 06-20-2006, 02:05 PM

I am triple positive, 47, premeno before chemo, but haven't had a period since Sept 2004. I'm going to have a discussion with my onc AGAIN, about switching, especially in light of the articles I was referred to by Astrid and Al.

snoopy · 06-20-2006, 02:36 PM

Triple positive. Premenopausal before chemo. Took Tamoxifen whilst I was on Herceptin. Before years herceptin finished I had an oophorectomy so I could have Arimidex

Bev · 06-20-2006, 06:44 PM

Triple pos, 47, chemopause. Have been on tamox 2 mos. I'll be switching to an AI less than 3 mos, 1 year anniversary of chemopause, if estradiol levels check out. BB

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 adrenalglands.

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.

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

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.

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.

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

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

Bronny · 08-14-2007, 05:51 PM

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