Looking for Alternative to Tamoxifen

kathy,

please enlighten me, I am kinda new to this forum-- maybe the topic AI versus Tamoxifen on and off in this forum...it seems Dr. Weiner is saying there is no difference in terms of survival benefit if one is using either AI or Tamoxifen -- right?

the clinical studies that Ruth brought up is not about AI versus  Tamoxifen, but why was a certain test (CYP - something) was not approved as a standard test...

I read the 2 studies about the CYP test-- and it seems it is related to that discussion about AI versus Tamoxifen (but its not the same thing).

one thing I learned though -- through this discussion is.. the CYP- something test -- was supposed to test how women metabolize Tamoxifen-- and it was not accepted as a standard test because women who will be tested as poor metabolizers will not have any other conventional option.

It seems  that even AI is not an option for women who are poor metabolizers of Tamoxifen.

what do you think?

Thanks Kathy,

But we're still not sure what references Dr. Winer was using to form his impressions and recommendations. Documentation is everything. I assume he gave Timothy references for his opinions.

No doubt, ATAC is one of the trials he may be referencing. But we still have more questions than answers. Someone besides Dr. Winer pointed out that in certain studies when patients were moved from Tamox to Arimidex, that may have screwed up the findings in that particular study.

I found this but I don't know what the actual references are to check. Maybe you'll have better luck.

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There has been a lot of debate about how to prevent cancer from coming back in post-menopausal women after initial treatment.  We discussed in our comparison of Tamoxifen with aromatase inhibitors the debate in general, and now will analyze Tamoxifen vs Anastrozole, brand name Arimidex, directly.

The data seems to say this: Arimidex is more effective than tamoxifen in preventing breast cancer from coming back.  And it may have different, less serious side effects.  But it does not necessarily increase your lifespan compared to tamoxifen.

(That said, please see the past post for an analysis of why that may be so despite what seems to be superior breast cancer prevention.)

What the studies say: ATAC

This study set out to compare Anastrozole, brand name Arimidex, to Tamoxifen Alone or in Combination (hence, "ATAC," an aggressive name for a study trying to shake things up.)  The question was, would treatment with anastrozole alone be better than tamoxifen alone, or would they work best in combination?

The results have been reported by some as a strong indication of superiority for anastrozole.  Arimidex, for instance, had significantly longer time to develop new cancer as compared to Tamoxifen.  As one site puts it, anastrozole increased disease free survival by 10%, time to relapse by 20%, and reduced cancer spread by 14%.

There's more.  In terms of side effects, anastrozole may have a significantly lower level than tamoxifen of serious issues like cerbrovascular, thromboembolic and endometrial cancer incidents.

But there is an important caveat.

While the form of disease progression seems to be significantly better with anastrozole than tamoxifen, the study did not show any ultimate difference in survival rates.  And anastrozole may have a higher rate of ischemic heart disease as well as a higher rate of unrelated, new cancers like lung and colorectal cancer, in general.  It had 54 new cancers as compared to 38 new ones for tamoxifen.

The Italian Tamoxifen Arimidex Trial

This study looked at 448 estrogen receptor positive, node positive post menopausal women.  (The estrogen/node receptor status will be discussed further in other posts.)  In that test, tamoxifen was either taken for 5 years or for 2-3 years then switched to Arimidex.

The results?  At 64 months, those who switched to arimidex had a better rate of event-free survival as well as relapse free survival.  Which is very promising.  Yet once again, there was no overall improvement in mortality.

Australian Breast and Colorectal Cancer Study Group

This study also looked at people taking tamoxifen for 5 years, or those who take it for several than switch to Arimidex.  A "censored" version of results that wasn't official showed no advantage in cancer recurrence for Arimidex but a slight improvement in overall survival.

This is interesting because it's the opposite of the other studies which have various benefits but no end result survival benefit.

hi Beth,

am not sure what you are talking about, but I thought all of us here are laymen (meaning not medical professionals) . if there are really medical professionals here, my apologies. I do not mean to credit or discredit anyone (more than the other). really, just thought I could inject some humuor.

I am also learning from everyone as well-- Timothy, MOC, you, kathy, mollyan and mind.. see am also asking a few questions as it seems there were previous topics that all of you are quite familiar of (something you have discussed before)-- and whilst a few of you do not want to discuss it anymore,however, i am still quite new to it-- so I am open for a little bit more discussion.

She "diagnosed herself?"  It is EXTREMELY common for women to have benign lumps.  As in, many, many (maybe most) women at some point in their lives have benign lumps.

Your friend didn't have cancer. 

pink candy: Can you get a second opinion from another oncologist? That is what I'm thinking of doing since I can't decide whether to do the hormonal therapy. I have  osteoporosis ( have broken a wrist and a hip recently) atrial fibrillation, and high BP so am worried about side effects.

In my opinion, I think the decision depends on your general state of health.

Good luck with your decision!

To srbreastcan... depends on family history, yes your health, post or pre meno. I have been told that because of all the problems that I should come off tamo. I got another blood test taken to see if I was post or pre meno. My onco said that I was lucky and had 2 small lumps 3mm with 2mm spread, 4mm 10mm spread no nodes affected. She said i would probably go on Armidex (i think it is called), mind u my onco said i have a 96.1% rate without taking anything. (Had 3 weeks radio). But yes they advice a course of adjavent thearpy after chemo or radio.

Not happy.

The other thing is if u get a second opinion from another doctor at another hospital, does that mean that u cant go back to your hospital, cause it has embarassed your onco. They might get miffed, and then get nasty.  Ive had terrible problems with my care.

Pinkie

question: I have confirmed info from my mother re family heart history, and my onco has taken me off tamo about two weeks ago, they say that tamo is the only prescribed treatment for pre meno women. I am 53, last period 1 year ago, they did a hormone test while i was taking tamo.

Post meno is -  50 mine was - 200. Apparently u arent surposed to take levels while taking tamo (or any other) as it wont give an accurate reading. I cant take tamo so what suggestions please.

My aunt has said to stick with tamo for another 6 months, wait 4 months get bloods re hormone level again, by that stage i will be 2 years without period and should then be post meno. Do u all think that this is a good idea.

Pinkie

I am happy to have found this corner of the discussion boards Diagnosed in Dec. 2010. Both breast removed Feb. 2011. Stage 1 IDC 9mm estrogen drunk little beast with clear lymph nodes. I have researched HARD for 2 months & told my Oncologist yesterday I will not be taking Tamoxifen. I am pre menopausal with an insane history of endometriosis. I have a Naturalpathic Dr. That is advising me with preventative care. I've started with I3C (DIM) therapy. Taking many supplements: Restveratrol, CoQ10, Omega3, Modified Citrus Pectin, Selenium, D3. And completely organic!

The decision to not take Tamoxifen was not a hard one but it does take time & energy to find a other way, I feel it's worth it. I won't go into all the statistics with estrogens & such, many other posts have;) But I will say the more I researched Tamoxifen the more I knew I couldn't take it. It seemed like I was potentially reducing a risk for one cancer and increasing the risk for another? As I mentioned, I have gone organic and very concerned with pesticides. In Ca. We have Prop 65. It publishes all known carcinogens that are are used & what the disease risk is. Well I was looking through this public site and guess what appeared before me? Yes, Tamoxifen. It is a known carcinogen that causes cancer. I was a bit shocked so I started researching it's history. After reading for days! I truly feel that it is the DES of our generation. The manufactures lobbied so hard to keep it off this list but they lost. When I saw my oncologist yesterday & told him I was not going to take it, he sort gave me attitude. Insinuated I was ignorant, whatever. I told him I wasn't comfortable trying to prevent a cancer recurrence with a known carcinogen...it didn't make sense to me? He said nothing else about Tamoxifen. I told him I was starting Indolence 3 Carbinol. ( DIM) he had no idea what is was. He asked if I would send him info. It's sad to me that Dr's seem to treat symptoms and not the whole disease. I feel cancer is a disease of the whole body & tumors are a symptom. It's like putting a pacifier in a babies mouth when he's crying....it quiets him but you still need to find out what's wrong? Right? I need to treat my whole body & not just pacify my estrogen. Something is really out of wack! If I take away one hormone, the others will dominate.

It's a very difficult path we have to walk, I am just glad Iam not alone. Thanks for all the input ladies!

tossing in two cents- i stopped the flaxseed (the seeds-not the oil) after being strongly advised against it thanks to my strong ER+. Same with any soy other than what occurs naturally. I willbe getting my hormonal panel tested again in June by very relunctant onc who agreed following my coming clean that I would not take the AI or tamox (following horrific reaction to a dose of armidex). If my blood work does not support my decision- I re-examine my choices.

I have researched beyond belief and sadly, I have come to this conclusion. We must do everything we can based on what we know and our bodies. Be it from oncs, etc- it ultimately remains an educated crapshoot. There are no definitive answers or one size fits all. That is the only fact I know to be true. Studies become outdated almost as soon as they are published-all are slanted to whomever is interperting the results. This applies to whatever it is being studied. Be it DIM or prescription...what works for one may not for another and in any event it may be the woman's particular body. All stages all grades fit general guidelines- the one whoopee card in it all is that we all have our particular and unique DNA that really determines the outcome. I am trying to support whatever the tests reveal with a keener understanding of my body and listening, so to speak, to what it tries to tell me. I think we as a people have gotten too far away from our own primal instincts when something is wrong. The little alarm bells go off and we poo poo it. I knew something was wrong before my DX- and it sure was not the size of the 5 mm tumor. It was a general malaise and run down feeling to my body in the months leading up to the DX. Having several weird and pesky illnesses come and go-all unrelated to BC but all related to something gong on in my body that was not right. It was what made me go for the mammo although I was "too busy" and had gotten a glowing physical....in retrospect....not so glowing as one thing leaped out from my blood work when I reviewed everything after the fact=my primary had sent my well woman results summary and said looking good, may consider D supplementation. This was two weeks before mammo which led to evrything thing else. Retrospective is important for me as I move forward. The past can offer important clues that can help me navigate my choices now.

anyway= hope all have a great day!

Well I have gone back on tamo, only to discover that intial sytoms have disappeared, but that my leg pain (bad accidents as teenager, which left me with a damaged knee, varicose veins which were stripped after my last child, so have terrible circulation anyway in that leg), left leg pain is terrible, keeps me awake at nite, and cant walk without difficulty now, as the knee injury has ment added pressure on my foot which is now looking very black from lack of circulation.  My onco has said that my recurrence rate is 4% without any hormone therapy.  I got told that ER+ HER- shouldnt take soya or flaxseed as their cells are activated by certain hormones what the hell do u do.  Sick of this.  Been seeing the doctor every week since end of radio (which was end of Feb), it is now June, with no solution.

Any suggestions.