Dr. Eric Winer on Aromatase Inhibitors (SABCS 2009)

molly52

Thanks Yazmin for posting this link - and thanks Otter for the transcript.

This videa seems to be mide stream.  It appears the conversation is about whether or not AIs provide a greater survival benefit than Tamoxifen alone or in combination with AIs.

My take on this is that the survival advantage of five years of AI's vs Tamoxifen is about equal.  And any combination thereof does not change the advantage.  Doctors should prescribe the Rx that is most tolerable for a paitent to ensure they will take them. 

He does qualify his statement that 8 years of AI data is not enough statistical data.  Which makes sense.  If the AIs have only been around for 8 years (outside of trials) how can we know if somebody will live 10 extra years over that of the Tamoxifen regime.

Whether a person chooses to take any Rx or not is a personal decision, but the science still supports taking one of the four Rxs when indicated.

Member_of_the_Club

I don't know that he was disappointed and the benefits of tamoxifen are not, in my book, minimal.  I believe the stat is that they improve survival by 50%.  So if you are already at a 96% survival, getting to 98% is, yeah, pretty minimal.  But I started at 80% so the benefit for me is substantial.

 But again, I don't see the disappointment.  Its great to have another tool for battling er+ bc.  Some women can't tolerate tamoxifen (I have a friend with paralysis who had bc and can't take tamoxifen because of the risk of blood clots.  She is doing terrifically on Arimidex).  Some of us complete the full five years on tamoxifen and are interested in increasing our chances of survival even more.  So AIs are a good thing. 

Omaz

I have a question - Do doctors ever tritrate the tam or AI dose?  Is that the right word, for example give you just enough to achieve a goal but not too much?

vivre

My problem with Arimidex from the beginning is that I could not find any studies that compared the use of this drug with those who choose to lower their estrogens with wt loss, diet and exercise, which is the path I finally took. All these studes just compare one drug to another. Until they do a study that proves the drugs are better than natural hormonal balance, I will not believe there are advantages in taking them. Since I lost all that midriff, where I use to stored all that excess estrogen, and stopped eating sugars and gluten, my hormone tests show my estrogen levels are very low.

And that brings me to another issue. Why do most oncs refuse to measure hormones in the first place, to see if they are actually working, and why does everyone get the same size pill, when our bodies and our estrogen levels may differ?

More and more doctors are speaking out on the importance of iodine and thyroid metabolism. I wager to bet that as more of us find this route to be very successful, blocking hormones as an ajunctive therapy will eventually become passe. After all, it use to be everyone got a radical mastectomy. When women demanded just to cut it out, lumpectomies became common, and they have found them to be just as successful in the long run.

Thanks for the link Yaz.

Claire_in_Seattle

Jane......

Please, please stop with your campaign to keep ER+ breast cancer patients from taking medications that may save their lives.

Hormonal therapy isn't a picnic, but it is the best we have at the moment.  The more advanced breast cancer is, the more potential benefit it has.

You might want to re-read Dr Winer BTW.  Because, your comments in no way represent what he was really saying.  You have managed to twist those as well.

I view everything you write as having the utmost personal malice. 

Because my intent is to LIVE and anastrazole just might be the magic bullet.  It's at least equal in benefit to the kick-butt chemo I had.  That is, why would I want a 25% risk of my cancer returning when I can take anastrazole and have a 13% risk?

 - Claire

Janeluvsdogs

Claire,

I'm sorry you see the ATAC study statistics, the Italian study statistics and the Australian study statistics as "malice." If you don't want to hear the statistics you can easily push the Ignore this member option.

Meanwhile, please do not try to censor scientific facts from others.

BTW, I support whatever therapy any member chooses.

Blessings.

Janeluvsdogs

Vivre,

I'm confused about the hormone measuring thing too. We have had people here who have estrogen levels of 2 and those with estrogen levels of 200.  They only know this because they insisted on having the levels measured.

I'm also confused why a 100 lb short woman would get the same amount of Tamoxifen or Arimidex as a 300 lb tall woman.

If you find out the answers to these questions, let me know!

Thanks for all you contribute here and on your web site. I want to join your next chat. I just found the button!

elmcity69

Claire, you rock. Thanks for saying what many --not all, but many-- of us are thinking.

Realism is one thing. Negativism is another.

Janyce

Member_of_the_Club

Jane, you really don't support whatever people choose.  I remember you writing about chemo killing people.  And then there was the time you posted in the lymphedema section that all of us with lymphedema got it from having a full axillary dissection (not true, some women have gotten it from SNB alone) and that was what we get for following the mainstream surgical recommendations.  You love to attack women for their treatment choices.  Plus, you distort the science.  All of those studies found that the benefit of AIs was similar to that of tamoxifen, not that there was no benefit.

I don't know if hormone tests tell you everything you need to know.  They may reveal the amount of estrogen in your body (I say may because my understanding is that accuracy varies) but that doesn't tell you if the estrogen that is there -- and there will always be estrogen, especially if you are not taking an AI -- will bind to the receptors on cancer cells.  Reducing estrogen helps, certainly.  Thats why it is also a good idea to lose weight.  But you will still have estrogen with these approaches.  If the alt approaches eliminated estrogen they would have the same side effect profile of AIs, and then what would the point be?   Joint pain, all the other side effects, are because of the lack of estrogen.  If alt approaches reduce those side effects, thats because it leaves more estrogen in your body.  And its fine if you want to go that route.  Some women really can't tolerate eliminating all estrogen and others are willing to take the additional risks of not reducing estrogen as much as you could with the drugs.  But they aren't equivalent.

lago

Janeluvsdogs said:
"We have had people here who have estrogen levels of 2 and those with estrogen levels of 200"

You might just ask your onc that question. I know that chemo is based on weight and size (surface area) but Als/tomax may work in a different way. I too would be interested in that answer.

Thanks Claire. BTW I know of one woman on Tomax and another on Als and both say it is a picnic. They have no SE!

Janeluvsdogs

Member,

I never said any of those things. If you believe I did, show me where I said those things.

Okay? Can you do that?

And please show me what study or science I "distorted." The studies stand on their own merit. If you don't like the studies, do you really want to personally attack the messenger?

Do you want me to keep the studies a secret?

elmcity69

 regarding  Member of the Club's last post:

I'm relatively new to the boards, so I likely need updates on protocol, but why on earth do the moderators allow such inflammatory postings and attitudes? I've watched Jane's postings and am amazed that they are tolerated.

Of course, we all have the power to ignore such postings, and if we don't, perhaps we are enabling the behavior.

 What troubles me most about Jane's postings is a visible "I told you so" glee about supposed vindication of alleged philosophy.

I take Armidiex, I feel fine on it, and my onc --who trained at Johns Hopkins-- is all for it. I feel confident taking it. Worst case scenario? I'm indulging in false hope. So what. There are worse things - like dying young on my 2 children.

Free yourselves, ladies, and use that "ignore this member" button.

 Janyce

' 

Member_of_the_Club

Yes, keep them a secret.  If you don't talk about them, the rest of us will never, ever find out.  Cause we don't know how to use the interent or talk to our doctors or anything.  So thank you.

You criticized the fact that Susan Sontag had chemo, even though her breast cancer was advanced and even though she survived it because of the chemo.  And because she developed leukemia DECADES later you said see, chemo kills and it killed her. 

 There was a thread about lymphedema in which you posted that women got it as a result of doing the axillary dissection.  I don't know why you were even posting in the lymphedema section because you had DCIS and therefore didn't have nodes removed and don't have lymphedema.

And you keep saying over and over again that there is no benefit to AIs and thats what Dr. Winer said, when in fact thats not what he said.

So, since you have all the studies, show me the ones that indicate a survival benefit from skipping all adjuvant treatment (which you recommend).  No chemo, no radiation, no hormonals -- you've written previously in various threads in opposition to these things.  Show me the studies indicating a survival benefit from not having any of these treatments. 

Janeluvsdogs

Member,

So you can't provide any direct quotes from me, only your allegations of what I say?

I rest my case.

Fearless_One

I feel fine on Arimidex, but it's only been a few months. 

Lovelyface

Ladies, I am basically a triple negative, however, my progesterone is only a small 5% positive.  My Onc. wants to put me on Aridimex, 1 mg. as well as Zometa (to be given by infusion every 6 mos).  I have been reading all this literature, including the latest clinical trial results from Dec. 2010, which seems so complicated to understand.  It says that it does not help with disease free survival.  These terms "recurrence" and "disease free survival and "overall survival" are so compliated to me.

Anyway, would anyone out there who is only 5% positive Progesterone, listen to their Onc. and take anti-hormone such as aridimex (I am post meno).  Please tell me whether you would consider taking it?  My Onc. never gives me anything regarding benefits versus risks.  I had my receptor tests redone twice, and both times, the results were the same.  Less than 1% ER positive, 5% of the tumor cells are positive for Progesterone, and HER negative, basically triple negative.

Please help me make my decision.  Should I take anti-hormone therapy and bear all the side effects for such a small positivity?  Would you take it?

Member_of_the_Club

Jane, here's one of your greatest hits

September 7, 2010:  At least we can agree that her chemo evangelism killed her.

Member_of_the_Club

Jane, here's one of your greatest hits:

September 7, 2010: At least we can agree that her chemo evangelism killed her.

 Nice.  (I deleted the previous post because the copy came up garbled). 

Janeluvsdogs

Have you ever heard of the literary concept of irony? That was a joke! Seriously, How could evangilism kill anyone?

And why are you spreading lies about my diagnosis? I never said I had DCIS. I had invasive breast cancer.

Anyway, I'm going to watch a movie, so you're on your own.

PM me, if you're so inclined.

Blessings.

DesignerMom

I for one would appreciate getting back to discussing the topic at hand in a civil fashion.  I appreciate sharing evidence- based studies about drugs.  No one needs to "win" in this discussion.  Each of our cancers is unique and therefore, none of us will make the same decision.  I have struggled more over the decision of hormone therapy than any other part of my treatment.  Many (including me) have health conditions which make hormone therapy a real juggling act.  In my case I have a clotting disorder so Tamoxifen may reduce my recurrence....but I might get a clot or stroke.  As I am perimenopausal, my Onc won't put me on Arimidex unless my ovaries are chemically or surgically shut down....more tough decisions.  I am not worried about small, uncomfortable SE in the least (went through chemo and rads, no problem).  I worry about long term unknown SE which seem to be coming out in the news every week, like increased heart incidents (I have tons of heart health risk history) and osteoporosis.  These are very tough decisions for some of us.

elmcity69

I agree with you, Member, all the way.

I do think, however, that some posters thrive on negative attention, and attempt to create further emotional chaos with passive aggressive statements. they are, in a sense, emotional "vampires" - and best ignored! our energy is better spent on ourselves and helping our "sisters" who bring only positive energy.

hugs

Member_of_the_Club

Designer Mom, this is a very tough decision.  I made a similar one when i was done with my five years on tamoxifen because I was still premenopausal, and it was the toughest treatment decision I made.  I chose to shut down my ovaries with zoladex (not to have them removed) and go on Arimidex and I have had a surprisingly easy time.  

Would it help you make your decision if you had a workup from a cardiologist?  If, for example, you could get some affirmation that your heart is fine now?

Exercise helps a lot.  I'm a runner and I have had no joint pain on arimidex, and I hope that the running will also help with the potential for bone loss and heart disease. 

DesignerMom

member-  Thanks for the suggestion of a cardio workup.  As I just finished rads in December, I am giving myself a little breathing space.  I liked my BS attitude and suggestion to " not take the Arimidex option off the table completely", that I could start it at any time and it would still give benefit.

I have read many of your posts and I SO admire your discipline with running and exercise.  I am very good with my diet and food, low glycemic, tons of veggies, no sugar or anything white.  Exercise is my weakness...and this &^%$# winter is not helping.  

molly52

Vivre,  I support whatever choice you make.  However, I would just like to point out, that I have been on the slim to underweight most of my life, have always had (and still do) a flat stomach, have exercised regularly and followed a very healthy diet.  No family history either.
Yet, I still got BC - and an estrogen positive one.
In my case,  all those good deeds were not enough to prevent a cancer.  I definitely could not trust them to prevent a recurrence.
I think it is great that you slimmed down, are exercising and eating healthy. Congratulations! I just wanted you to know, that they, of themselves, did not help me.

 

sam52

Yes, the 'naysayer' posted, just as I predicted way back at the beginning of this thread.

And twisted the words to fit her own spurious beliefs.

Heidihill

vivre, oncs do measure how responsive tumors are to estrogen (mine are 100%). I would venture to say that "very low" levels would not be low enough for me. I exercise daily, but not at the level of an Olympic athlete, which is what I would need to do, at the very least, to bring my estrogen down to almost 0 by exercising alone.

My onc did not measure my estrogen level, but I'm sure he could gauge with the side effects I had from Femara how much I was metabolizing as well as from the fact that my periods did not return. I did test as an ultra rapid metabolizer for tamoxifen, which puts me in a rare category, and IMO made me more likely to suffer more serious side effects (but who knows, there are no studies on this).

I have read the side effects of AIs vary according to the age you begin taking them and whether you took Taxotere before taking them and your stage. Nearer menopause and taking taxotere make SEs worse. Probably being 100% ER+ didn't help. I hit all four birds, being stage 4. Member, my guess is that taking an AI break years down the road clears cumulative stressors and resets the clock somehow. That's why I did it (other than to stop the pain!). I was also hoping that letting my body be without AIs for a short period of time would allow any cancer cells to become resensitized just in case they were getting desensitized. In any case, my onc let me do it with the suggestion that I take melatonin while on my break.

Anonymous

I also would like to point out that I have never had a bmi in the overweight category, and am a runner too.  Ironically, I have met 10 or so women in person from BC.org (including our very fit Claire) and most were VERY slim - all seemed within normal bmi guidelines. 3 that I know well were too thin for a DIEP, so no belly roll AT ALL. 

My er + was also as high as it could get.  I have no side effects from femara and have been taking it for over 1 year.  Okay, hot flashes I get, but not the pain and stiffness that I read about.  My bone density is that of a 30 yr old according to my onc, so that is not an issue right now.  I completely believe that women get terrible side effects, and have to look at other options, but I also believe that one needs to try it first and see how you feel before you toss it out.  I have been eating organic for 13 years - when I became pregnant with my first child.  My age of having a baby is my only risk factor - 32.  Having a baby over the age of 30 is a risk factor.

I still believe that non recurrence is really important, not just increased survival.  You can survive for many, many years as a stage IV but it is usually with a lot of treatment - which I think most of us would like to avoid.  Some stage IV are able to stay NED but I still would like to stay recurrence free.  Local or distant.

My onc. does check my estrogen quarterly.

Like all of the variations in the bc ride, weight just seems like one of the many things that can tip the scales for your body to grow tumors. In my case, it was not. It seems like there is some sort of recipe for a perfect storm - and there are so many variable that science (whether alt or conventional) has not been able to pinpointed the cure.

mollynminnie

Hi all...

I don't want to turn this thread back to any negativity-  but I was just reading through it and I have noticed that nearly all of the threads I have read where JaneLuvsDogs has commented have turned negative.  Reading back on her posts, I truly feel that she is not offering anything constructive, and may well scare someone in believing they have made a mistake in their choice of treatments-  based on Jane's "opinions".     

Does anyone know what we can do about this?  Yes, we all can hit "ignore", but others- particularly those early in their journey- will not know her comment history.

I am just tired of clicking on a thread that interests me, only to see that it has been sabotaged, once again.

I'm sorry if I took this thread off track, I just wasn't sure where to post this.

To get a little bit back on track-  I would just like to reiterate that we all make the choices that are right for us at the time.  Until we've walked in another's shoes we cannot begin to understand.  We are here to respect each other and offer SUPPORT.  Period.

 Molly   

Member_of_the_Club

We should ignore.  i realize I didn't tale that advice, but generally when we don't respond, the threads get back on track.

mollynminnie

You're right MOTC.  I guess I was doing exactly what I was referring to (taking threads to a negative track).  Maybe we should all just not respond to any of her posts-  would be interesting to see what she does.

Thanks...