Tamoxifin and Herceptin

[schoolteacher]

Jill,

Thank you for replying. Since finishing my chemo, I have been nervous about what to do next. This week marks one year ago that I discovered the BC in my breast, so I have not been able to sleep.

I usually research ahead of what to do next, and I feel this is one reason he hasn't recommended.

The big question today: Am I going to take the Tamoxifen tonight? I agree with your early post about taking the Tamoxifen and Herceptin together.

If you have any other advice about what to do next, I would greatly appreciate it.

I have to go take blood this afternoon, so I will not be able to read any post for the rest of the day.

Amelia

Hi Amelia,

I am not a doctor or other medical professional, and I didn't even sleep at a Holiday Inn Express. I also don't know anything about you or your medical history. With this disclaimer, I would take the Tamoxofin, as long as there is nothing about your medical history that puts you at risk for harmful side effects from Tamoxofin, such as blood clots. You can always stop taking it later, if you change your mind. I would also go to a major cancer center, if possible, for a second opinion.

When I stopped chemotherapy (and was NED), I started Zoladex injections to suppress my ovaries. A few months later my doctor started me on Femara, an aromatase inhibitor. I also continued on Herceptin. My onc explained that studies showed that Femara plus Herceptin led to better outcomes than Femara alone. A asked her about the converse -- Herceptin alone versus Herceptin plus Femara. She said that there were no trials on that because "no one would do that." She did not explain to me why no one would do that. I later poked around on the internet, including this site, and saw that this was a common treatment for Stage IV Her2 positive, ER positive women after chemotherapy. In particular, I noted that Dr. Eric Winer gave a presentation at which he said he would continue Herceptin with hormonal therapy after chemotherapy. So, I think it makes sense for you to have some form of hormonal therapy, but that is based largely on what my onc told me rather than independent research. (She really is an expert in the field, though.) Whether Tamoxofin or an AI is appropriate, I don't know, and you have a lot of input from others on this. I also think you should speak with someone about ovarian suppression. Although you have not had your period, that does not mean you are post menopausal. (I think you said you have an estradiol level of 50, which would confirm this point.) Ovarian suppression could be used together with either Tamoxofin or an AI and may give a better result than either alone.

Sorry if this is disjointed. I am rushing to get out. But again, I think it would be worth getting another opinion from someone who specializes in breast cancer. You could start taking Tamoxofin while you are waiting to schedule such an appointment.

Good luck! And congratulations on being one year out from diagnosis!

Jill

[TSund]

Hi Amelia,

Ruth's oncologist, Dr. O., who is a major researcher at at the Baylor cancer center, says the evidence points to tamoxifen being synergistic when given with Herceptin. She put Ruth on it immediately after surgery (and pre-surgery chemo).

You are much in the same boat as Ruth age and menopausal status, and I'll agree that it is mighty confusing. I'd certainly strongly agree with others' concern about you going off herceptin. Ruth doesn't have the option of staying on Herceptin, and I wish she did. (Dr. O. says the Herceptin will stay in the body and continue to be protective for a good while after discontinuing, but the logic of this doesn't absolutely convince me despite her extremely strong credentials.)

It is good that your dr. did the test for tamoxifen metabolization. This is a missing piece in many of the studies, and when you figure that percentage in, the issue of AI's over Tamoxifen gets more cloudy. That being said, I feel Ruth should make that switch within not too long a period.

I am glad that the tamoxifen might be helping Ruth to get stronger bones in preparation for the eventual switch to an AI. The risks of osteoporosis are substantial, and shouldn't be ignored.

Best,

Terri

[AlaskaAngel]

Hi Jill,

I was diagnosed HER2/ER/PR positive and put on tamoxifen in 2002, but as time went by I found questions had been raised as early as 1998 about using it routinely for HER2/hormone receptor positive patients. I was taken off tamoxifen upon further discussion with my oncologist. Here is an article from 2004 that discusses just one of a number of questions about tamoxifen and HER2's that is fairly easily understood:


http://www.oncolink.org/resources/ar...h=06&year=2004

Here is a more recent discussion:

http://edrv.endojournals.org/cgi/con...tract/29/2/217


At this point, as patients we are not identified for risk by testing (for example) for AIB1 levels, so how would an oncologist have the information to decide which patients should have the tamoxifen and which ones should not? Might it be safer for premeno HER2's to avoid using tamoxifen, at least until ways to deal with the problem of development of resistance are provided to such patients, rather than encouraging them to use it?

AlaskaAngel

[schoolteacher]

Jill, Terrie, and Alaska Angel,

Thank you for your replies.

Terrie, tell Ruth I have been thinking about her.

Amelia

[TSund]

Hi Alaska Angel,

Am I remembering correctly that you did not have Herceptin? You were way "ahead of the curve" in being aware that Tamoxifen, particularly w/o Herceptin, could be questionable for HER2+ cancers.

The only thing worse, tho, would be A.A.'s given without making sure the ovaries were shut down. We met a wonderful young woman at our onc.'s office whose stage 1 no node ER+ cancer was treated by her former oncologist with armidiex (and either pre-herceptin or no herceptin given). Her cancer spread like wildfire.. and when we met her she was stage 4 with multiple mets and quite ill. The arimidex was like putting fuel on the fire as it can actually stimulate the ovaries to make more estrogen when pre-menopausal.

It made me so angry.....at the ignorance of the that onc., and at this disease for taking away such a vital and young wonderful mother and individual.


TRS

[TSund]

Amelia,

I will tell her. She's been down about this lung infection and other stresses. She REALLY wanted to get the port out this fall, but looks like that is not happening.


TRS

[AlaskaAngel]

Hi Terry,

Yes, that would be the necessary alternative.

It is genuinely a particularly difficult set of choices to make for both those who are diagnosed at a young age and their oncs, who know these patients are at such risk and yet may have so many years ahead of them to have to handle having such drastic hormonal changes and options in terms of having a family. I don't know if that is the case here.

So in that sense I can understand if the onc is torn between the question of the dangers of tamoxifen to HER2's versus the impact on the patient's life and youth with such major permanent hormonal changes.

But what I am most uncomfortable with about all this is the situation where the patient-onc discussion hasn't clearly identified what the actual risks or choices are, for the patient to consider.

You are correct -- I never had Herceptin, but also back in 2002 the oncologist failed to tell me at all that I was HER2 positive and I only received a partial path report without those results. I learned that I was HER2 positive through the online tom-tom patient discussion about the question that had been raised about tamoxifen and HER2's, by then requesting my full path report. The onc wasn't providing me with the information that I needed.

AlaskaAngel

[Becky]

I want to add my two cents here at the juncture of this discussion. I got Herceptin but I did not get it until 4 months after chemo was over (2 months after rads) due to it just not being available yet (as the trial was just concluding). When rads ended, hormonal therapy begins. I was premenopausal, ER+ only and only 50%, and Her2+. All my research pointed to the fact that Tamoxifen can actually fuel that kind of pathology so, until I had my ooph, I didn't want to take Tamoxifen alone. Although since that time I switched oncs, my onc at the time was frantic about "not doing anything". He practically begged me so I took Tamoxifen for exactly 2 months, started Herceptin and got my ooph and started Arimidex (you have to be off Tamoxifen about 3 weeks if having surgery - probably to reduce the chance of blood clots so I really didn't see the point of being on it for just 2 months anyway as it probably did nothing one way or the other).

If AIs weren't available, I think I would have not taken Tamoxifen as I would have been too afraid to do so as I think unless you are at least ER+ and PR+ it can fuel cancer or at least ignite Her2s action.

I definitely am not an expert on this topic, and hope I did not hold myself out to be an expert. Based on my limited reading in this area, for someone like Amelia who is stage IV, Her2 positive, ER positive, and pre-menopausal, I would feel safest with Herceptin and ovarian suppression and an aromatase inhibitor. (And that is the treatment I am undergoing.) I have not read all the articles referenced in this thread, and I know that there are some studies that suggest that Tamoxifin could fuel a Her2 positive cancer, and that AIs have been shown to be more effective for post-menopausal patients than Tamoxifin. I think (but I could be wrong on this), however, that if one continues the Herceptin, as Amelia is doing, that the Tamoxifen should not fuel the cancer, although it might not be as effective as an AI. (Terri was right in cautioning that a premenopausal woman should not take an AI without ovarian suppression. This could be quite dangerous.) Since Amelia's choice currently seemed to be Herceptin alone or Herceptin with Tamoxifin, I recommended the latter. This was based on my onc's comment that no one would give Herceptin without hormonal therapy to someone who was Her2 positive and Er positive. (We were talking about an AI, however.)

My strongest opinion, however, is that you (Amelia) should get a second opinion and discuss the issues raised in this thread with an oncologist at a major cancer center. You deserve to have an expert answer your questions regarding the appropriate therapy. The fact that you do research does not mean that an oncologist should not give his or her opinion on recommended treatments. Someone with expertise in this area is better able to critically read the relevant studies and to know which ones warrant the most weight than we are (or at least than I am), and should be able to explain the reasons he or she recommends a particular therapy. I will stop nagging, however, and sign off on this thread. It just makes me nervous that you might decide on your course of treatment based on postings by lay people. In my humble opinion, the way this message board can be most useful is to pose questions for one to take to an oncologist to have answered, or to suggest novel treatments to propose to an oncologist, but not as a substitute for expert medical advice. (And this is coming from someone who compulsively researched almost everything about her treatment. It just happened that at the time that I first was treated with Zoladex and then Femara, I was more obsessed with whether it was smart to stop chemotherapy than with which hormonal therapy would work best.)

Jill

I agree with you that we are just lay people, rambling about our inexact understandings and about our personal experiences. I agree with you that a second expert opinion is always a good thing, and in unclear circumstances, it's closer to a necessity. And then even a third or fourth opinion. Sometimes these expert opinions will clarify or correct; other times they will simply show that there is no one "correct" answer - all of which will improve peace-of-mind for the person trying to make the right decision.

But my sense is that on this board, it is a given - an unspoken understanding - that what we say is merely somewhat-informed conversation and not truly medical advice. We as a group are sharing experience and knowledge so that when we do discuss issues with our oncologist, we will have a better understanding of the choices that are available for discussion with that professional. If some are not perceiving the discussions in that way, maybe there should be a generic disclaimer notice at the start of each post. Or we could ask everyone who makes a claim (for example that Tamoxifen fuels HER2+ cancer, which I think may have been suggested years ago but never proven), we could ask that the person making that claim cite their evidence (post the abstract at least and preferably the full text).

Jill, do you think that this is a problem? If so, it's not just Amelia who should be receiving this caution but everyone who asks a question and receives answers.

Debbie Laxague (not sure why I'm showing up as unregistered but I'm too tired to copy/paste and sign in - although, I'm on my 4th try to get the six letter or digits right - these are hard to see!)

[schoolteacher]

Ladies,

I really want to thank all of you for your responses.

Terrie, that was interesting about the woman and the AI.

I hurt my finger Sunday trying to prime my well, so I have not started the Tamoxifen.

Amelia

Hi Debbie,

I agree with all your points. I don't think a general disclaimer is necessary, and I believe that, in general, advice on this board is given and received in the spirit you suggest. I just felt uncomfortable because I felt (perhaps incorrectly) that Amelia seemed to be looking to me (and others) to give specific treatment advice that she intended to follow, and I am in no way qualified to give such advice. (Except for the advice to get another opinion:-))

I like the idea of posting links to abstracts (or better yet, articles) when one has them readily available, because I personally like to see and test the bases for the poster's opinion. But I don't think that is always necessary when one is merely expressing an opinion or suggestion. Unfortunately, on most controversial subjects, there often are articles with conflicting points of views. One source of information other than articles that I find valuable is CME (continuing medical education) lectures that are available on line. Often these lectures discuss and interpret studies done by various groups, and sometimes they attempt to explain the disparities in results.

Best regards,


Jill

[VirginiaGirl]

Hi! Question: How long is "long enough" to see if a treatment approach is working? I am trying Femara and Herceptin (every 3 weeks) and have been on this since end of August. My 2nd opinion doc at Johns Hopkins recommended this, but said it's an approach that takes a while to work. I just had a pet/ct scan last week which showed some progression, and am meeting w/ my onc this week to discuss what to do next. Also, I've noticed that about 7-9 days after my Herceptin treatment, more times than not, I'll wake up with a migraine, vomiting, etc. which lasts a few to several hours, then disappears. I don't have a history of migraines. I was thinking migraines were sometimes caused by estrogen levels dropping, but I didn't think I would still cycle at all (ovaries out two years ago and loving that!). My onc said this wasn't a typical side effect of the herceptin/femara. I had been on herceptin & tamoxifen a couple years ago (significant progression then!) and didn't have these symptoms. Anyone have any ideas or similar experience? Thanks! (PS I need to update my signature - obviously no longer NED)

[Believe51]

.........."This next step in my journey"........

Yeah that's right My Angel, forward on onward. Go get 'em!! Lotsa Love>>Believe51

[schoolteacher]

Thank you Marie,

I am going to ask my doctor to do a phone counseltation with Dr. Slamon or a doctor at a major cancer treatment center about staying on the Herceptin and starting the Tamoxifen. I plan on staying on the Herceptin, but I would also like to do a vaccine.

If the Mighty has anything to say about staying on the Herceptin or the Tamoxifen, will you please let me know?

My mother will get a kick out of your reply. I can't wait to give her the hug and tell her it is from you.

The big story will be at the end of the month when I have all the scans.

Amelia

Hi,
I am new to this whole thing and am considering my options. I would love to ask if you are happy you did implants, if you have had any trouble with them?

Thanks!

[Janelle]

I would double check with your doctor about soy. My doctor advised me to avoid it since I'm ER positive and soy acts as a synthetic estrogen. This is a conversial topic but I would research this topic before eating or drinking soy products.

[Laurel]

Amelia (aka Schoolteacher), please let me know about the E-Cadherin testing. I will be seeing my onc on Wednesday and will definitely be bringing our discussion to her. I am strongly triple positive: Her-2 = 6.9, Er=80%, Pr=90%. Presently I am taking Tamoxifen for 1.5 yrs whereupon I will switch over to an A.I. This plan has been suggested as I am 49 and although I have not had a period since May, I may not be menopausal. Another question for my onc: how do you test to know whether you are postmenopausal.?

Well, another fine mess to sort out on our own, huh? By the way, just wondering how many triple pos. folks are out there? I know we are the minority within the Her-2 community. Can we get a role call going?

[Becky]

To find out if you are truly postmenopausal you can get a blood test to test LH, FSH and estradiol. You should do it a couple of times over several months because one test can say yes and the next time it can say no (this can happen when perimenopausal).