Tamoxifin and her2/neu+ gals

carstell · 07-22-2008, 03:16 PM

Anyone on Tamoxifin. I have been looking into the cyp2d6 test. Tamoxifin metabolizing test, because I have heard through other boards that we her2/ neu gals might not get the same benefits from Tamox. If I am a poor metabolizer, I might lean towards an ooph and AI's. This sound familiar to anyone? Heard anything about this?

Cheryl

Jackie07 · 07-22-2008, 10:41 PM

Hi,

I've been back on Tamoxifen since February. There was some discussion one time on the board about how Tamoxifen might interfere with the HER2 treatment. I am not sure if most of the Oncologists have reached consensus on this issue. Will see my Onco 4 weeks from now. I'll discuss with him again.

Gerri · 07-23-2008, 08:21 AM

Hi Cheryl,

It was not so long ago that I was posing the same question. You can probably do a search and come up with quite a few threads on this subject. I was 52 at the time of my dx (you look to be much younger) but still pre-menopausal. My onc put me on Tamoxifen and I stayed on it for two years. I was getting concerned about being a poor metabolizer because I never experienced hot flashes while taking the drug. At my two year mark I was getting ready to force my body into menopause when low and behold I was finally there! I am now on Femara and doing remarkably well.

There is a lot of controversy regarding Tamox vs AIs in the HER2+ population. My onc felt that all the data was not yet in supporting an AI over Tamoxifen - I had this discussion with her every time I had an appointment. At first I was very comfortable staying on Tamoxifen, but as time went on I was getting anxious to make the switch. I never asked about the test to determine if I was resistant to Tamoxifen, but I would encourage you to have it done. However, from what I understand from other threads on this board, taking Tamoxifen while receiving Herceptin is beneficial so you are probably safe with it for now. I believe your age and degree of positivity in your ER/PR status come into play as well. Hopefully Becky and others will see this thread and give you more information.

Good luck with your decision making; I know it can be overwhelming at times.

Believe51 · 07-23-2008, 08:56 AM

Cannot comment on your question but I can comment on that avatar picture. "I love it and wanted to know if you could tell the story behind it??">>Believe51

carstell · 07-24-2008, 09:26 AM

My uncle Bill lives in a small town in Minnesota. There they have a rodeo. On one of the days, they have a "dare to wear pink day".a portion of money made that day goes to breast cancer research. So all the cowboys that wear pink to make some extra money. My uncle does wood work, and was asked to make a couple of ribbons.They even have lights!! He brought them to my parents house when we had a " no more chemo" BBQ. They are traveling ribbons. Several other groups have borrowed them for events!

Cheryl

kcherub · 07-24-2008, 09:41 AM

I have been batting this question around in my mind for a while, as well. Although, I would think that with my hot flashes, loss of libido, and strange periods, it is doing "something". I am going to ask at my next ONC. appointment.

Also, the PA told me (at one point) that if I had a period while on Tamoxifen, they would change me over to an AI. She wasn't really all that "studied" on AIs, and I called her on it. When I asked my ONC. about it, he didn't seem all that concerned if I still had a period. Could that be because although Tamoxifen has the symptoms of menopause, it doesn't actually cause menopause? Freaky.

This is all so damn confusing.

Take care,

Hopeful · 07-24-2008, 01:39 PM

Cheryl,

Lots of discussion on this topic recently: http://her2support.org/vbulletin/sho...eferrerid=1173

Best of luck to you,

Hopeful

Melissa · 07-24-2008, 10:47 PM

I did have the tamoxifin test and was found to be a poor metabolizer. My onc and I thought it best to go the ooph route since my period came back after chemo and my cancer tested high for hormones. So I had the ooph and I am now on Arimidix. I still have lots of hot flashes and sometimes I just don't feel the same but all in all I'm doing great. I think it's only 10% that are poor metabolizer and I'm one of them. So tamoxifin would not have worked for me.

wtfsanjo · 08-02-2008, 09:50 AM

krista -

i cannot believe your PA said that if you had a period on tamoxifen that she would put you on an AI. tamoxifen has nothing to do with menopause and periods - it simply blocks the cancer cells' ability to "eat" the estrogen and progesterone you are naturally producing. i was on tamoxifen for 9 months and had normal periods the whole time.

the larger issue about tamoxifen and her2+ is whether her2+ cancers are resistant to tamoxifen. there have not been dedicated studies on this that meet the scientific rigor that would be "practice changing" but there is significant evidence embedded in lots of small studies that her2+ cancers are resistant to tamoxifen.

the one exception to that is that herceptin (when you are taking it) allows the her2+ cancer to NOT be resistant to the tamox. so i took tamoxifen during herceptin, and am on nothing now - onc and i decided i wasn't doing any good.

but i just wanted to weigh in on your PA's comment - that makes no sense and is absolutely FRIGHTENING that you were given such info.

xo
katie

carstell · 08-02-2008, 12:38 PM

Thanks for the responses! It is amazing to me how confusing this all seems to be, and how much of an advocate you need to be for yourself.I am now struggling with my insurance to see if the cyp2d6 test will be covered. I am on Herceptin for the next 9 months, so I figure I have that time to pleade my case. I also brought to my Dr's attention that a med that I am on in the winter inhibits Tamoxifin. He was completely unaware. So the whole winter I would not have been metabolizing the Tamox! Seriously. I thank God for the gals (and guys) on these websites that keep updated on things. It's my life we are gambling with!

Cheryl