HER2+ Cancer - No need for Tamoxifen??

heathermcd

I'm hoping that you amazing ladies can help me out in finding a study. I received some information on another board that some ladies oncologists had mentioned to them that it is likely that in the near future the standard of treatment for HER2+ cancers that are also hormone receptor positive will not include hormone therapy because they are finding that HER2+ cancers act like HER2+ rather than ER+ cancers. I'm wondering if anyone else has heard this information?

There are a couple of reasons i'm following this lead.First, my Onco has recommended that I get an Ooph, so as you can imagine, if ER+ HER2+ treatment is going to shift to treat only the HER2+ portion, I don't want to jump the gun and get a treatment that I didn't really need to have. Second, i'm looking at some clinical trials and since i'm both HER2+ and 100% hormone positive, i've been wondering which way I want to go in regard to the clinical trials. IE: treat the HER2 or treat the hormone status.

 If anyone has seen studies on this or has links to studies/articles that have been done, I would be forever greatful! 

LindaKR

I haven't heard that, would be interesting to find out.  I thought that they were totally separate factors, which is why I was treated for both the hormone receptor + and the Her2+.

lago

I haven't hear that either. My onc's area of interest is HER2+ and is the head of oncology at my treatment center (teaching hospital). She also went to the San Antonio conference. I will be starting on Anastrozole (generic Arimidex) March 1st. I am only 30%ER+ and 5% PR+

Can you ask these ladies to ask their oncs for copies of the studies. I know my onc gives me hand outs of a study if she recommends something that is new or not quite standard yet but has promising results.

LindaKR

I really don't think that you need to choose between the two.

LindaKR

and I don't think you need to choose between the two factors - you should be treated for both.

Letlet

lago, would you know why some ladies are being prescribed arimidex and some tamoxifen? I am a little unusual, I am ER negative but PR 60% and onc wants me to go on Tamoxifen..which I believe works only on the estrogen part

lago

Arimidex is an aromatase inhibitor… they only work on post menopausal women. Tamoxifen works on both. There can be many reasons besides menopausal status for prescribing one over the other. If you look at the more serious side effects for both this can influence the decision based on your medical history. I'm sure there are other medical reason too.

I immediately went into chemopause. Never had a period on chemo. I was peri when starting. My onc is going to monitor me closely to be sure I stay in chemo/menopause. I will be on Anastrozole (generic Arimidex).

I don't know anything regarding PR status and what they really means. I myself and only 5%PR+ and 30%ER+

heathermcd

Thanks everyone for your replies.  

Linda - Thanks for your reply! I am aware that I can be treated for both and plan to have the standard of treatment....i'm more than happy taking the Tamoxifen as well as Herceptin and whatever else comes down the line. What i'm trying to determine is if anyone else had heard that they might, in the future, stop treating the ER+ for people with HER2+++. If this is a possibility, I don't want to have my ovaries removed at age 27 only to find out that I could have had a much better quality of life with limited risk. BTW - I see you are a fellow Oregonian!

Iago - I asked on the other board (Young Survival Coalition) and received one response. They changed the boards yesterday and we lost all of our history. Great timing! Anyway, one person responded saying that they had received this information from their oncologist at Sloan Kettering. I'll keep waiting for additional responses and follow up if I get anything more! 

mmm5

Heather

Hi I am seeing 2 Oncologists One is my primary and the 2nd is for my participation in the SWOG trial. This particular Oncologist is originally from MD Anderson and he is nationally renown for research and heads a very prominent Teaching Oncology Division at a Teaching Hospital.

He has been telling me the same information that you are hearing and has stated that I could come off of anti-hormonals as the Her2 piece is most improtant. I am at the 3 year mark, so I guess that coupled with the fact that I had a highly aggressive grade 3 tumor he feels the likely recurrence period would have been in first 2-3 years. 

Frankly the advice scares me to death, and I have chosen to stick with hormone suppression (even though it is highly unbearable). I met with a panel last month that reviewed my history and both ONC's advised me to listen to this Onc as he is so highly researched and respected. I will be considering this over this next year because QOL is so important to me. 

They also told me that most ONC's heavily devoted to HER2 research are coming to these same conclusions.

I would love to hear as much on this topic as possible. 

mmm5

PS I grew up in OREGON, went to college there as well......... and as side note- I would do a lot of research before making the decision to give up your ovaries

JeninMichigan

I am only 5 percent ER + and have been on Tamoxifen.   My oncologist just said we are covering all our bases.   I had my ovaries removed also last year.  I hate Tamoxifen though .. makes me feel like an old lady :-(

Jennifer

mackers67

Jenny... I started tamoxifen on valentines day lovely!!! I know ur on the other board same as I am, all my bones ache now!!!



Regarding her2 I am 90% er+ and my onc told me that tamoxifen and herceptin not only controls cancer but kills it???



Only a thought and this may sound stupid but if ladies are 90% or 80% er or pr positive, what is the remaining percentage,I suppose they would hv found a cure if they knew that?! Often wonder?



Xxxx

meglove

I came aross a post from some ladies before about Her2+ BC patients do not digest tamoxifen well and the tamoxifen ends up promoting cancer cell growth. Did anybody have some information about that. I told my onc today about that. He said he will do some research about it. If anyone knew could post a link, it would be really helpful. Thanks!

pmanghel

@mackers67 - I too have bones and joint aches from the Tamoxifen. I studied the side effects and that is definitely one of them. Not a well known one, but still recognized none the less. Good news is that for me the symptoms have become much more manageable and decreased over time. I have been on Tamoxifen for 5 months now and it is much better. I also had a bit of nausea at first, but now that too is milder and comes and goes.

I too am going on Herceptin soon, and my oncologist is insistent that NOTHING is a 100% guarantee that the cancer will be "exterminated" but that all these things working together is giving us a GREAT shot at it.  When you hear these percentages from the medical community about cancer, remember they are just generalizations. Very few times is there actual data to back them up those numbers, and besides the numbers change depending on who you talk to about it. It is all just a gamble, and unfortunately it is with your life.

So, my advice is don't drive yourself crazy over the numbers, just talk to your doctor and come up with the best treament for you that will get you the most effective results possible.

I know it is hard sometimes because everyone keeps shoving numbers at you from the time you are diagnosed, until years after treatment stops.

I am not looking forward to the Herceptin treatments either, I've already had a lumpectomy, radiation, Tamoxifen therapy and now Herceptin for a year. UUGGHH! But if it helps me watch my grandkids grow up, then that is what I will do.

Good luck to you mackers67!