Tamoxifin and Herceptin
 

This Thursday I go back to the doctor to take my Herceptin and get my follow up blood work.

I really need advice about beginning Tamoxifin. I think I read one time about taking Tamoxifin and Herceptin together to get better results on this board. If any of you know any information about this, will you please let me know?

My oncologists said, "I could begin the Tamoxifin in December or I can wait until I finish the Herceptin in February." We don't know yet if I will stop the Herceptin in February since I was diagnosed as Stage IV in the beginning.

I do not really want to wait until February since my BC was estrogen driven.

I would greatly appreciate any advice that anyone can offer me concerning this next step in my journey. If there are any articles, I would greatly appreciate them too.

Thanks,
Amelia

I don't have any knowledge about Tamoxifen and Herceptin but am taking both now. I started Tamoxifen about 2 weeks ago and am 6 months into my first year of Herceptin. So far just hot flashes, night sweats, and aches in my tumor area. I agree with you that I wanted to get going on Tamoxifen as I was ER+ and didn't want to feed my cancer. I too would love to hear from others on taking both of these drugs together.

Cindy,

Thank you for your reply. Thanks for letting me know the side effects you have experienced. I did not realize that it would be possible to feel aches in the tumor area.

Some of the women I have talked too said, "The medicine made them mean."

If you gain any more knowledge about this combo, please let me know.

Amelia

there is a lot of data that says tamoxifen doesn't work nearly as well in Her2+ patients - some data says it doesn't work at all in Her2+ patients. however, the addition of herceptin interacts with the tamoxifen in Her2+ patients and makes the tamoxifen work better. i took tamoxifen during herceptin, and discontinued after the end of herceptin. at that point i strongly considering ovarian ablation (i was 28, premenopausal) and an aromatase inhibitor. if you are strongly hormone positive, i would definitely recommend an AI versus tamoxifen. oncologists are generally resistant to this idea of tamoxifen resistance in Her2+ patients - at this point the available data hasn't reached a critical point to change standard of care for Her2+ patients. most oncologists would agree, however, that tamoxifen doesn't work as well in Her2+ - if i had been more hormone positive that i was, my ovaries would be shut down already and i'd be on femara. no question.

katie

Amelia,

Here is a link to a thread that contains several excellent links on this topic: http://her2support.org/vbulletin/sho...eferrerid=1173

I agree with Katie's remarks above completely when she says, "oncologists are generally resistant to this idea of tamoxifen resistance in Her2+ patients - at this point the available data hasn't reached a critical point to change standard of care for Her2+ patients," and would add that those of us on this Board do a pretty good job of staying ahead of the curve in terms of reading papers and studies that apply to Her2+ patients, and often are the ones who bring this information to the attention of our doctors. IMO, it is always wise to keep asking questions until you get answers that make sense.

Hopeful

Katie and Hopeful,

Thank you for your replies. I did have the Tamoxifin test about a month ago, and the results say that I am an extensive metabolizer of Tamoxifin.

Do either of you know if this fact will help? I am still premenopausal. My leave was still at 50. I have not had a period in three years.

Any additional advice I would greatly appreciate.

Amelia

as far as i know (and i've spent many hours trying to figure out this tamoxifen thing) it doesn't matter if you're a good metabolizer or not - even if you fully metabolize it, you cancer cells - because they are Her2+ - will still be resistant to the tamoxifen.

the only thing that menopausal status impacts is what sort of hormone therapies are available to you. tamoxifen can be used by both pre and post-menopausal women. aromatase inhibitors (femara, arimidex) are only for use in postmenopausal women. luckily, medical science can turn any premenopausal woman into a postmenopausal one through either ovarian suppression (shots to shut down your ovaries) or ovary removal (oopherectomy). aromatase inhibitors have been shown to be more effective than tamoxifen overall, and certainly are more effective in Her2+ patients.

i know it sounds scary to "shut down" your ovaries, but even at 28 with no kids i was 100% on board until my onc decided that 10% progesterone positivity wasn't enough to merit such aggressive care.

like hopeful said - ask a lot of question of your onc - and of people on this board. i hang out primarily at the young survival coalition board, and as knowledgeable as those women are - the women over here on Her2support are like scientists!

k

Amelia, I was in the same situation last year. I took Tamoxifin while I was finishing up my Herceptin but after the Herceptin was finished (I got one year) I had my ovaries out so I could take Arimidex. My onc agreed that he thought the Arimidex worked better for Her2 patients. Having the ovaries out was so simple, just out patient surgery and I was back to work in 3 days. The Arimidex does cause alot of aches and pains but so far I can tolerate it. When I was on the Tamoxifin I didn't notice much side effects except the hot flashes.

Nancy

Amelia,

My understanding is that in Her2+ ER+ patients, the "cross talk" as they call it allows for stimulation of the cancer in multiple ways, whereas there are fewer stimulation pathways in Her2- patients. Using Tamoxifen to block ER stimulation can push the Her2+ cells to more active signaling, to give the cancer an alternate pathway to grow through. One of the studies I cited in the link above said that this force was so strong in some patients, if clinical trials utilizing Tamoxifen were to be designed, it might be prudent to treat even Her2- patients with a Her2 blocker, to prevent this alternate signaling from occurring.

Whether or not to take Tamoxifen is a decision you need to make with your doctor. For myself, all of the reading I have done on this topic has made me leery of not just Tamoxifen, but anything (foods included) that can act like a SERM.

Hopeful

relatively resistant to hormonal therapy - not just Tamoxifen
 

Hi all,

When the adjuvant AI data first started appearing, there was a lot of talk about AI's being better in HER2+ cancer because HER2+ cancer was Tamoxifen resistant. But I think that over the last few years the thinking has changed a bit. Yes, HER2+ cancers tend to derive less benefit from hormonal treatment. That is probably in part because the levels of hormone receptors tend to be lower, and in part because of resistance to hormonal treatment. But it's looking as if that resistance is similar for AI's. It's not just Tamoxifen.

And alas, the jury is still out on the whole issue. It's interesting to me that the garden-variety community oncs are the ones who'll tell us that they know these answers: "AI's are more effective for HER2+", or "Tamoxifen is fine for HER2+", or "Herceptin makes Tamoxifen work better". Any or all of these statements may be true, or not. We do not (yet) know enough to make such broad statements.

I think that these docs make these silly statements for several reasons. One, they know that we like to hear that it's all under control. They, too, like to feel that it's all under control. So they tend toward giving answers that sound more secure or absolute than they really are. Secondly, these busy community oncs probably do not read all there is to read about breast cancer. They may be hanging their hat on one or two studies, when there are 10 studies and the results are contradictory. You can find one or two studies to support almost anything you'd like to support. The experts in the field of hormone treatment and hormone resistance will be the first to say that they do not (yet) know enough to make such statements.

There's a lot of information going to appear next week at SABCS. In the meantime, here's a recent (2008), long, and complicated discussion:

http://www.medscape.com/viewarticle/580741_3

You may have to register to see this but Medscape registration is free. The link is to page 3 of 7, so scroll through it all. If you're like me, you'll skim the details of the complicated discussion of pathways and crosstalk but still be able to get the gist of it. I'll copy/paste some relevant snips (broken up for readability) below. Remember that they are talking about hormonal treatment in the absence of Herceptin or other HER2 targeted therapy (although if you follow the link, page 4 and 5 do bring in Herceptin and friends).

There was some initial enthusiasm that HER2+ tumors would be more sensitive to AIs than to tamoxifen.[76] Careful analysis of published data, however, suggests that even with AIs, patients with HER2+ disease have a poor response.[83,84,85,86,87,88]

For example, a phase III trial of 916 patients[17] with advanced breast tumors and an unknown HER2 status treated with first-line endocrine therapy showed superiority of letrozole over tamoxifen in terms of TTP (9.4 months versus 6.0 months; P <0.0001) and overall response rate (ORR; 32% versus 21%; P = 0.0002).

Nevertheless, subsequent analysis of HER2 status[83] revealed that in HER2+ patients there was no significant difference between those treated with letrozole and those treated with tamoxifen in terms of ORR (17% versus 13%; P = 0.45) or clinical benefit[89] (33% versus 26%; P = 0.31), although a strong trend towards a longer duration of response with letrozole was observed (6.1 months versus 3.3 months; P = 0.0596).[83] These poor results in the HER2+ subpopulation contrast with the median TTP observed in the HER2-negative subgroup (12.2 months in letrozole-treated patients and 8.5 months in tamoxifen-treated patients).

Finally, early preliminary reports from the Breast International Group 1-98 Study (BIG 1-98) and the Arimidex or Tamoxifen Alone or in Combination (ATAC) trial, which compared tamoxifen with either letrozole or anastrozole, revealed that HER2+ status is associated with a significantly higher relapse rate, regardless of whether an AI or tamoxifen is administered.[86,88]

Taken together, these studies strongly suggest that HR+/HER2+ breast cancer may be less responsive to tamoxifen and estrogen-deprivation therapies with AIs than cancer negative for HR and HER2 expression, which could be an indication than HER2 overexpression and/or amplification results in a dominant phenotype in ER+/HER2+ tumors.

Are you still reading? There's LOTS more - that's only a portion of page 3, and he goes on to discuss Herceptin and other targeted therapies in conjunction with hormonal treatment, etc. Let me know if you have trouble with the link.

Debbie Laxague

The difference I see between AI's and Tamoxifen is that Tamoxifen is both an angonist and an antagonist for ER receptors. While it is supposed to be strictly an antagonist for bc, in Her2+ patients in particular, it has the capacity to act as an agonist, to actually promote the growth of the cancer. The GUNN study from Naples was the first to recognize this, when their data showed that ER+ Her2+ bc patients fared worse on Tamoxifen than those that received no hormonal treatment.

I have not yet read any papers that intimate that AI's have a similar result. I think this is most likely because they work by removing ER rather than manipulating it.

Hopeful

I really appreciate all the information that everyone has supplied. I have your posts and the articles to discuss this with my doctor tomorrow.

Thanks to all.

Amelia

thanks for bringing up all the contradictions; i am aware of many conflicting studies. bearing that in mind, how do you (or anyone else) conceptualize the "real world" decision-making process around AIs versus Tamoxifen for Her2+ women? (full disclosure: i am a phd student at johns hopkins doing research in patient-centered decision making in chemoprevention.)

the clinical answer can't be "do neither" for various reasons. and it's neither safe nor pragmatic to put women on herceptin for the entirety of their hormone therapy. the options are limited, but a choice must be made. the glut of information that exists on the internet (published and unpublished) and beyond complicates such a decision to the point of total paralysis for a patient.

so: what is a marginally well-educated Her2+ and hormone positive patient to do? if a person can't reliably look at outcome data, should we instead be focusing solely on the risks and side effects of each particular hormone therapy to guide decisions?

"they tend toward giving answers that sound more secure or absolute than they really are"

Ha! I have felt this way about things on many occassions...paired with the sense they are overworked and unable to stay as updated as they might be. I have had to correct oncs on basic info suggesting they were incorporating info from the previous patient. Scary.
Any thoughts on Fulvestrant which seems to be a different approach, obliterating the receptor itself.

I am also triple positive, started Herceptin in June 2007 (after completing 3 x FEC, then 3 X Taxotere), started Tamoxifen in July 2007. I am still taking Tamoxifen, my onc. and one second opinion onc. have both advised me to stay on Tamox. for at least a couple of years as I already have osteopania, and Tamox. is good for the bones, AIs supposedly are not.
My onc. and I have discussed this matter of Tamox. vs. AIs, taking my ovaries out - he just does not recommend it for now, probably because many of the studies are not definitive as pointed out here.
I am investigating doing Zometa infusions, I have an appointment with a rheumatologist and will discuss all this with her as well. My onc. thinks it could be a good thing for me.
Yes, what is a triple+ girl to do? (and I am highly ER+/PR+).

all the best
caya

Hi Amelia,

May I be so forward as to suggest that you get a second opinion at a major cancer center. While others have focused on the portion of your post regarding Tamoxofin, I am more concerned about your statement that you might stop Herceptin, although you are Stage IV. If you are currently on Herceptin and your cancer is still under control, I think it would be a big mistake to discontinue the Herceptin after only a year or on the drug. I am not sure why your onc is even talking about possibly stopping it, unless you have progression.

I would also be quite concerned about taking Tamoxifin without Herceptin, for the reasons discussed by others.

I also was diagnosed as stage IV, and I currently am on Herceptin, Zoladex, and Femara, as well as Zometa.

Good luck!

Jill

opening the circle a little further....
 

Hi,

To add to the decision-making process in regard to the real world...

What about the HR-positive premeno HER2 patients who:

1) missed out on trastuzumab (by virtue of being diagnosed and treated before it was available as adjuvant therapy)

2) might be able to access a pill form of treatment, but are economically or logistically unable to access an IV form

They may not be commonly accessing the internet or this forum, but they also are part of the picture. Due to the concern about not taking tamoxifen without Herceptin, they are are particularly at risk, aren't they?

My "feeling" (not scientific) is that docs are groomed to offer a pill as a solution for diseases, and the patients pressure them for something to use as a reassurance, and psychologically it makes docs feel like they are doing something and allows them to play the all-knowing role of a hero who has "done all he can", and so they avoid dealing with specific splinter groups like HER2's any differently for the most part than general bc as much as possible partly out of convenience. Habits formed are hard to break. Thus the continuing physician endorsement of tamoxifen for HER2's continues.

At the same time, these wise men give zero emphasis at patient visits to the importance of balancing fats, or to promoting exercise, or to encouraging weight loss, or to avoiding the foods that are created through the use of supplemental hormones and pesticides. I feel their net credibility is rather limited.

AlaskaAngel

As if these decisions were not already difficult enough
 

New information on line today about tamoxifen posted in the articles forum: http://her2support.org/vbulletin/sho...eferrerid=1173

Hopeful

I really appreciate all the information about Tamoxifen and Herceptin. Some of you posted last night after I left school, so I was unable to read your post until this afternoon.

He gave me the prescription today for the Tamoxifen. I do know at this point if I take the tamoxifen, I will definitely be taking the Herceptin with it. He told me I can stay on the Herceptin after February if I want to.

I also asked him about having my ovaries out like Caya did, and he said, "He did not know if he would recommend doing this at this point." My estrogen level was 50 three weeks ago, and I do not understand why it is still at this level. I have not had a period in over three years. I am not overweight, and I walk some. I have started eating some foods with soy in them, and I wonder if this is affecting my estrogen level.

He did do an Elisa test to check the Her2 today. The last one was 11.9, so I am praying that it is still in the normal range.

I am reading the latest article that Hoepful has posted.

I am wondering if you can be tested for the being deficit in E-cadherin (absencee of good cell-cell adhesion)?

I have thought about getting him to do a phone consultation with Dr. Slamon to see what he thinks.

Amelia

Please stay on the Herceptin, if you are still stable on it!! I wonder why your doctor doesn't recommend that you stay on it, rather than just saying that you "may" stay on it. Although I do much more than my fair share of researching, I expect my oncologist to provide her recommendations for treatment and the bases for these recommendations rather than just offering choices.

Take care,

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

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

Questioning the routine use of tamoxifen for HER2s
 

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

Jill, Terrie, and Alaska Angel,

Thank you for your replies.

Terrie, tell Ruth I have been thinking about her.

Amelia

Alaska Angel Tamoxifen + Herceptin
 

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

msg to Ruth
 

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

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

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

Good points, 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!)

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

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)

Amelia
 

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

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

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

Implants
 

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!

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.

Triple Positive Role Call?
 

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?

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).