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

[Lala]

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]

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]

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]

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]

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

[beccarlw]

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]

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]

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]

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]

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]

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.

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]

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

[AlaskaAngel]

Kat-in-the-Delta,

I do, Kat.

My PCP's daughter is a radiologist, and he is pretty aware of issues about radiology. Last year when I had my physical exam with him, I made a list of every radiologic procedure I'd had so far (not including dental). This was at 5 years out from diagnosis for me. I could tell right away that he wasn't aware of how much radiation I'd had -- and all of it was for a Stage I person with no recurrence. I think he was shocked.

For those diagnosed at higher stages, knowing where to draw the line on therapies is a different question, even though it is just as damaging and hazardous to them, and I can't speak to that.

You are NOT alone in thinking what you are thinking OR in feeling what you are feeling.

Sincerely,

AlaskaAngel

[CindyE]

I am triple positive, premeno (until chemo), and will be starting Tamoxifen tomorrow. I am hoping that I can tolerate this drug threrapy along with my Herceptin.

[Lien]

Hi Cindy,

You'll probably do fine. Please remember that those who have no trouble with some kind of tx don't write. It's the ones who do struggle with side-effects that feel the need to send a note, rant, vent, or share.

Good luck!

Jacqueline

[WolverineFan]

I'm curious as to why this thread started up again, since it looks like the first time was about four years ago. I am ER+90%, PR+95%, and Her2+++. After finishing chemo, I began Femara, but stopped in early October and switched to Tamoxifin since I started my period. Just had a hysterectomy two days ago, and my onc wants to put me back on Femara. My understanding is that Femara is the best thing for her2+ women if you are in menopause. I was definitely premenopause before starting chemo, and then went into a chemically induced menopause due to the chemo. Just curious as to if there were recent developments on which is more effective. Thanks so much!

[Joanna J]

I am sort of confused abt this poll,Am I reading correctly,this poll is only for women taking Tamoxifen?
I thought that if a woman is ER- PR- that they CANNOT take anything like Tamoxifen? Hope I am not confusing anyone. looking for answers,Joanna J

[Trish]

I was pre-menopausal prior to diag in 2004. I didn't have Herceptin at that stage adjuvantly, unfortunately. After chemo I was put on Tamoxifen until I had oopherectomy mid 2006 so I could go on to Arimedex. Unfortunately mets were diag in Dec 2006 and have been on chemo pretty much continuously since then hence no anti hormonal. My onc said there was some research that suggests tamoxifen and chemo is counterproductive but not info re AI's. Am considering if an AI, Tykerb and Herceptin would be best for me. At present I am on Abraxane and am stable though TMs still high.
Trish