help with hormones?

jentx · 09-02-2008, 01:19 PM

Please help if you can. My onc seems suddenly non-committal about next steps and I feel a little lost. I haven't posted here before, but was hoping someone could give me some advice:

My cancer stats: 1.5cm IDC, stage 1, grade 3, no nodes, strongly ER/PR and Her2+++
dx'd 12/07, bilat 1/08, TCH Mar-April, Taxol + Herceptin May, Herceptin until 5/09

I'm currently taking Tamoxifen with only minor SEs, but my estrogen levels remain high and am clearly pre-menopausal.

My questions:

I assume that OS or an ooph is in my immediate future (my estrogen levels are high!). Any advice about the best route? Are any of the OS drugs easier than others?

Tamoxifen or AI? I know many consider Tamoxifen sub-optimal for Her2+, yet many oncs still prefer it. Mine says my age (42) is one good reason to stay on it if I can, if only for a couple of years. If it's a safe and responsible choice, I'd like to, since I feel pretty good on it so far (since end of June). I can also see pretty plainly the high drop out rate on AIs-- the SEs seem to be a quality of life nightmare. But I have a young child and will do whatever I need to to see him grow up.

Thanks in advance for any advice of for sharing your experience.

Becky · 09-02-2008, 05:00 PM

Tamoxifen while on Herceptin is still an excellent choice as you are blocking the hormone pathway and the Her2 pathway.

You are highly hormone positive and that's also a big plus (regardless of Her2 status). Although the general studies show AIs to be superior to Tamoxifen, the Tamoxifen and Herceptin combo is a good one. This will give you time to explore chemical shutdown of the ovaries (with Lupron or Zoladex) or an ooph if you want to switch to an AI. You have time to research (on the web and on this site) and also see what ASCO breast conference (coming up this weekend) and the San Antonio Breast Cancer Symposium (mid Dec) might present on in terms of new data in this area.

I will make a side comment that estrogen can be a powerful fuel for cancer but your current combo is fine. The decision lies when May rolls around and Herceptin therapy is done. Discuss, discuss, discuss with your onc. He may know researchers in this area to consult on your behalf. Remember, many of us Her2+ are not highly hormone positive which is why Tamoxifen does not work well for Her2's . For example, I am low/moderate ER+ but PR negative - probably a clearer picture of someone that Tamoxifen may not work for so I got an ooph 3 years ago (but I was almost 47 then and nearing a more natural menopausal age too - yet I got my period back 7 months after chemo - go figure).

Keep asking questions to your onc, here on this board and to anyone who will listen for opinions. Even get an opinion from another onc in another practice.

Hugs to you

flynny · 09-02-2008, 07:14 PM

Becky,

I haven't posted much on this website (as you can see), but your response to jentx intrigued me!! I was unaware that more Her+ individuals are low ER/PR+ or neg. I was ER(5%)+ and PR(2%)+ which really makes me wonder about tamoxifen. I will be finished with my taxol/herceptin on 9/8. Then on 9/29 I will my 3rd MUGA scan, meet with my onc. and then get herceptin. During this appt, we will also be discussing tamoxifen and I will most likely start immediately. I am 35 y.o. and have 2 young children, but obviously do not plan on having anymore, so I'm very much on the fence about having an ooph. There is so much to think about, but I am really blown away with what you said. As a side note, my mother just passed away of metatstatic BC to the brain (leptomeningeal to be exact). This type is very rare and typically people only live 4-6 mos my mother was 10. She fought a good fight, but in the end cancer got her. It was really crazy when I was dx in February, just before we were bringing her back up to NH (she had been in the Boston area for almost 4 mos). I really wish I found this website during the time my mother was dx, it would have given me so many other avenues to look at. Her cancer was ER/PR+, but I'm not sure what %age and of course HER2+ also. I recently told another onc at the Dana-Farber about my mother being Her2+ as well as myself and he was very taken back. First of all, the likelyhood of mother/daughter being dx is a low %age, but to be Her2+ is very low. My mother was dx at 54 and I was 34. Life sure is crazy, but you just have to keep your chin up and smile even when it's hard to.

jentx · 09-02-2008, 07:38 PM

Thanks, Becky.

It sounds like my numbers mean only that I'm still ovulating, but maybe the Tamoxifen can still prevent the cells from using the estrogen? I think I'd reduced things in my mind to: all estrogen must go.

In any event, Becky, I'll take your advice and use the next few months (while I'm doing both Herceptin and Tamoxifen) to get some more opinions and (hopefully) learn something from new research.

I'll sleep better tonight. Thanks again.

jentx · 09-02-2008, 07:40 PM

I'm sorry to hear about your mother, flynny. Good luck with your decisions and take care of yourself.

flynny · 09-02-2008, 07:43 PM

Thank you. Good luck with your journey as well.

Melissa · 09-02-2008, 08:35 PM

Hi,
You might ask your onc about the CYP2D6 tamoxifen test. It's a test to see if you have high or low CYP2D6 (if the liver can metabolize tamoxifen). Only 10% of people do not. I was among the 10% of poor metabolizers. This test is still controversial, some thinking maybe other factors contribute to metabolic rate of liver. You can read the research. If you don't metabolize tamoxifen some doctors say you won't experience symptoms such as hot flashes. SO hot flashes are good. I felt wonderful on tamoxifen, no hot flashes at all, so maybe I didn't metabolize it well. Who knows?? BUT if I could have taken tamoxifen I would have. It builds bones instead of tearing them down like the AI's. Women on tamoxifen also have the option, after 3-5 years on tamoxifen, of taking an AI another 3-5yrs. Wishing you the best!!

flynny · 09-03-2008, 05:54 AM

Thanks Melissa for the info. I am aware of the CYP2D6 test and have brought this to my oncs attention. She said (just like you) it is very controversal and people who haven't even gone through chemo etc can have high liver function. I would like to get the test anyway, just to see, but I'm not sure what my onc will say. I go to Dana-Farber Cancer Institute which is one of the best around, so I feel comfortable on what (if anything) she will come back to say. Sometimes I think you just have to roll the dice and see what happens. I really appreciate your response. 2 year Survivor... you go girl!!

Becky · 09-03-2008, 06:29 AM

Here's a study that will be presented this weekend at ASCO 2008 Breast.

I'll post more if applicable.

http://www.asco.org/ASCO/Abstracts+%...stractID=35897

Becky · 09-03-2008, 06:43 AM

This one is of significance and outlines the Tam resistance in Her2+ patients

http://www.asco.org/ASCO/Abstracts+%...stractID=32959

jentx · 09-03-2008, 10:06 AM

Thanks again, Becky. Food for thought.

Also, thanks to Melissa. I actually requested and took the CYP2D6 test, but am still waiting (and waiting) for results.

jentx · 09-03-2008, 10:38 AM

After making a nuisance of myself, I finally got my test results: I seem to be an extensive metabolizer. (I hear everyone that the test is still controversial, but I'm encouraged that it doesn't offer another flag-- of whatever significance.)

I know there's a lot more to consider, but I'm learning every day. Today I feel like I can take my time and review the new research. It seems like the next "deadline" for a decision is May, when I stop Herceptin.

I'll meet with my onc to discuss the pros and cons of OS in the meantime.

Thanks, everyone.

mts · 09-03-2008, 02:00 PM

Jentx,

Don't forget that Herceptin has a "carry-over" effect. Not to say that your search for answers should be postponed... Just that the power of that drug is awesome.

PS: welcome to this wonderful board...

Maria

jentx · 09-04-2008, 12:44 PM

Thanks for the welcome, Maria. Glad to have found this board!

I don't want to assume I understand what you mean when you say "carry over effect:" do you mean that there's a measure of protection from Her2 and estrogen cross-talk after Herceptin treatment ends? (I guess during the six months or so until all Herceptin is gone from your body?)

Every time I think I understand the nuances of this business, it turns out I've over simplified or missed a wrinkle.

If you notice this and have a minute, can you say more about what you mean?

Lien · 09-04-2008, 02:38 PM

Hi Jentx,

I'm sure others can explain the technical stuff much better than I can. But I'd like to chime in, because in 2004 I was facing the same decision, but without the Herceptin option. It wasn't available in the Netherlands, where I live.

I too had young children (aged 3 & 8) and wanted to do everything I could to improve their chances of growing up with me around. So after long talks with an internist and a second opinion from another internist/oncologist, I decided on taking Zoladex to put my ovaries to sleep and Arimidex. Both docs felt that for Her2 +++ an AI was a better bet, and I decided on Zoladex, because we have no idea what the impact of severe estrogen deprivation will be long term. This way I can still decide to reverse things.

So far I'm doing really well with this combo. I've been on it for almost 4 years now and have had some mild hot flashes (reduced now by regular exercise) and stiffness in hands and feet in the morning, or after a period of inactivity. These symptoms fade within 10 minutes when I start moving about. My libido is very low, my vagina is dry, but my sense of humor hasn't really suffered, so I'm not complaining.

For me the most important thing is to see my kids grow up. So I take lots of Vit D and Fish oil and an anthroposofic tx. It's like having sex with a condom, while using a diaphragm and taking oral contraceptives. Better safe than sorry. I realized that for me the bottom line was: if I don't take this tx, will I be able to explain to my kids why I didn't if the cancer comes back?

Take your time and make the right decision for you. Side effects are easier to handle when you've made a conscious decision to take the risk.

Hope this helps a little

Jacqueline

jentx · 09-04-2008, 10:17 PM

Jacqueline,

Thanks for sharing your experience-- I'm encouraged that you haven't had too much trouble with the OS and AI. Reading your post, I was surprised by my reaction, which was that I'd do the same thing once my year of Herceptin runs out in May. I will do some more research, consult with a couple 2nd opinion docs and keep thinking about it, but my thinking right now is like yours: what could be more important than to see my son grow up? If it's really miserable, I can stop OS and wait for natural menopause. And we learn new things all the time-- if I can tolerate it even for a little while, it might buy time to learn about new approaches.

Plenty to think about. I really appreciate that you took the time to write. Thank you.

j.