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Topic: Alternative drug to Arimidex

Forum: Complementary and Holistic Medicine and Treatment — Complementary medicine refers to treatments that are used WITH standard treatment. Holistic medicine is a term used to describe therapies that attempt to treat the patient as a whole person.

Posted on: Jul 4, 2009 02:06AM

wblibrary wrote:

Has anyone been taken off Arimidex due to side effects and found something "natural" to use in its place over a long period of time? 

Wblibrary Dx 9/2008, IDC, 4cm, Stage IIA, Grade 2, 0/10 nodes, ER+/PR-, HER2-
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Jul 4, 2009 02:30PM gage wrote:

Recently, I found a new natural supplement that claims to metabolize estrogen in a way that will

stop it from forming/contributing to the development of breast cancer.

The research is out of the U. of Nebraska Cancer Research Center (not sure if that is the exact name but I know it was done at the U. of Nebraska) and seems to be very scientific/academic.

The doctor and the PhD research scientist behind it have developed the supplement and are selling it independently.  

Please go to the website at www.preventium.org and read about it.  Everything is explained in detail on that site.  

I have been taking it myself for several months now.   

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Jul 4, 2009 03:40PM dlb823 wrote:

wb ~ You need to join us on a thread here called "natural girls."  There's lots of good information along the lines of what you're after.  To answer your question -- yes, there are several natural estrogen modulators, like I3C and DIM.  But doing a supplement alone probably isn't as effective as doing it along with  lifestyle changes that are also known to lower estrogen and/or your risk of a recurrence, such as exercise and diet changes.  Too much to go into here, but hope to see you on "natural girls" if you're interested.  You can find it in the "Alternative, complementary and holistic treatment" section.   Deanna  

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Jul 4, 2009 04:11PM wblibrary wrote:

I spoke to my oncologist about I3C and DIM - and he said they are not effective.  He said there is NO natural alternative that is as effective as a hormone blocker.  I was looking for a drug alternative.  Hormone blockers are even more effective in the fight against reoccurrence than chemo is, I was told.  I'm asking if anyone has gotten off Arimidex and found another drug that has less side effects????

Wblibrary Dx 9/2008, IDC, 4cm, Stage IIA, Grade 2, 0/10 nodes, ER+/PR-, HER2-
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Jul 4, 2009 04:27PM dlb823 wrote:

wb ~ I guess I didn't understand what you meant by "natural."  As you probably know, there are 3 aromatese inhibitors -- Arimidex, Aromasin and Femara.  Some women have fewer problems with 1 than another, but finding which one is a matter of trial & error.  Also, sometimes stopping whichever one you're on and restarting it helps.    Deanna 

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Jul 4, 2009 04:36PM 07rescue wrote:

This is the "alternatives" area of the message board, so if you are looking for a drug to take instead of Arimidex you may be better off asking on the "Homones" board. The aromatase inhibitors all have a very similar "side effect" and safety profile, because the adverse affects are all symptoms of estrogen deficiency, which is the mechanism they employ to reduce the risk of recurrence. There is some evidence that the more adverse side effects one experiences on them, the more effectively they may be working for you - you don't get one without the other.

Faslodex may have less joint symptoms than any of the aromatase inhibitor drugs like Arimidex, but it is only approved for advanced, metastasized breast cancer, so insurance won't pay for it unless you have already had a recurrence. It is very expensive if you want to pay for it yourself, beyond the means of most people.

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Jul 4, 2009 06:01PM wblibrary wrote:

Sorry everyone - I was just looking for SOMETHING without major side effects.  I'm really at a crossroads in my therapy.  I feel so much better being off Arimidex, but I also don't want breast cancer to return.  I thank you all for your advice. 

Wblibrary Dx 9/2008, IDC, 4cm, Stage IIA, Grade 2, 0/10 nodes, ER+/PR-, HER2-
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Jul 4, 2009 06:04PM - edited Jul 4, 2009 06:04PM by anondenet

WB, we don't really go by what our doctors "say" on this thread. We go by what the doctors can prove in terms of survival studies.

Also, "effective" is one of those onc mystobabble words. "Benefit" is another one of those words.

What precisely does he mean by "effective?" 

Effective in terms of you'll survive longer? There is NO evidence AIs will improve your survival because they haven't been used long enough.

AIs are used more than chemo because after 30 years of giving chemo to hormone positive women they realized it didn't make any difference. For the last 30 years hormone positive women went along with chemo because they assumed there was evidence. Well, a lot of us have stopped assuming our doctors know what they're doing. You can look the evidence up yourself.

Don't want to be defined by my stats-- this would be medical hexing.
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Jul 4, 2009 06:31PM dlb823 wrote:

wb ~ As 07 said, you won't find a drug that blocks estrogen that doesn't give you major SEs because the SEs are the result of your body being totally deprived of estrogen -- not a reaction to the drug itself. 

I also wanted to give you one other possibility to look into.  It's a newer drug called Evista.  My primary doctor recently RX'd it for me for osteopenia, but it also regulates estrogen, and evidently has bc prevention capabilities similar to tamoxifen but without the blood clot risk, although it's not yet fully approved for bc prevention.  I still haven't decided if I want to take it (I'm just very leery of drugs), but since you're in a searching mode, you might want to ask your onc about it.     Deanna

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Jul 5, 2009 04:15PM wblibrary wrote:

Thanks for all the information, but I guess I'm just too scared to try something that hasn't really been approved yet.  Seems like no matter what my choice is - there's always risk of recurrence.  I am leaning towards going back on the Arimidex though and working on a healthier lifestyle to help with the joint/bone pain.  I'm not brave enough to go against my onocologist's advice. 

Wblibrary Dx 9/2008, IDC, 4cm, Stage IIA, Grade 2, 0/10 nodes, ER+/PR-, HER2-
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Jul 5, 2009 05:02PM - edited Jul 5, 2009 05:48PM by anondenet

I'm not brave enough to follow oncs who have such a poor track record on approved breast cancer therapies that turn out to be duds. Don't forget chemo was "approved" for hormone receptor positive women for 30 years. Until they discovered it conferred no benefit in 97% of the cases.

I'm not brave enough to follow these known losers with respect to breast cancer.

I'd be willing to listen to oncs with respect to a blood cancer or testicular cancer-- where oncs have good gotten fairly good results. But with breast cancer they have screwed up big time.

How many years is it going to take to discover Arimidex makes 45 year-old women feel like 75 year-old women and confers no survival value? I will not be a guinea pig.

Don't want to be defined by my stats-- this would be medical hexing.
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Jul 6, 2009 10:44AM seaotter wrote:

anomdenet - VERY well said and AMEN to that!!!!!

Dx 1/22/2009, IDC, <1cm, Stage IIA, Grade 1, 1/30 nodes, ER+/PR+, HER2-
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Jul 6, 2009 04:54PM fairy49 wrote:

I don't think that a great deal of time was spent on clinical trials for the AL's, remember the patent for Tamox ran out just as the AL's were introduced.......so IMO WE are the clinical trial.

DX 9-22-08 IDC 1.1cm Stage 1 Grade 2 SNB 0/5 ER+ PR+ HER- Bi-Lat Mas re-con,tissue expanders on 10/29 - Exchange to silicone implants on 3/6/09 Oncotype DX Score 9 - BRCA 1 & 2 Negative.....If God brings you to it, he WILL get you through it
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Jul 6, 2009 09:18PM vivre wrote:

Wblibrary-Ask your onc what proof they have that arimidex works for you? Do they do any estrogen tests before or after so you can see what effect it may be making, besides making you feel terrible? Well, I started on I3C after my doc (a chiro) did a complete workup of my hormones. After 6 months we tested again and the results showed that it worked. And if you google I3C or Dim you will find that there are studies that show they do the exact same thing as Tamox, with no side effects. They have been tested, especially in other countries not ruled by the FDA, who are mostly an arm of drug companies. The reason your doctor does not believe in anything alternative is that they have to follow what the FDA approves and the FDA will not approve anything that does not have a drug company lobbying for. It is a viscious circle. I lowered my estrogen levels considerably with diet and exercise too. The point is, unless you have your hormones tested by someone who thinks outside the box, you will not know what works and what does not.

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Jul 6, 2009 09:26PM Member_of_the_Club wrote:

wblibrary, have you tried tamoxifen? Many women who have trouble with AIs do just fine on tamoxifen and the difference in effectiveness is very minute.  Its definitely worth a try.  I've been on tamoxifen for over 4 years and am doing great.

Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Jul 18, 2009 06:15PM Yazmin wrote:

Wblibrary:  If there are any estrogen tests for Arimidex, it would, indeed, be interesting to find out if it works for you (if that test is dependable, that is). I agree with Fairy49: the AIs are at an experimental stage at this time. They will probably worry about the side-effects (some very serious) later on.

Please question more. And then more.
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Jul 18, 2009 10:49PM smallworld123 wrote:

Where do you buy 13c? I cannot find it. I have been drinking concord grape juice, it suppose to cut your estrogen by 50% Thanks
Dx 3/27/2009, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, HER2-
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Jul 20, 2009 02:37AM wblibrary wrote:

Update - I started on Femara two days ago - off the Arimidex.  Hoping fewer side effects with this one.  I don't really know what the answer is anymore.  It's all very confusing and frustrating. 

Wblibrary Dx 9/2008, IDC, 4cm, Stage IIA, Grade 2, 0/10 nodes, ER+/PR-, HER2-
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Aug 2, 2009 02:46PM Jraffanti wrote:

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Apr 20, 2010 09:15PM turtlehen wrote:

Thank you so much for this thread.  My sister and I who both had breast cancer together were both given Arimedex and have had horrific side effects.  I had no idea that true studies had not been done.  I've searched in vain for statistics on the success rate for this poison with no luck.  It's plain to see that with millions of women being perscribed this $300/month  drug what this situation is all about.  I am grateful beyond my ability to express.

Payne by Name~Pain by Nature
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Apr 22, 2010 07:14AM suegirl wrote:

WOW $300 DOLLARS its only $3.00 a month here in new Zealand but mine are still sitting in the drawer i have decided not to take it. i felt anxious and stressed and had this strong feeling not to take it. 32 side affects to radiation 36 to temoefin and one is it can make the tumors grow then temoxifen side affects and then arimadex it seems down here in nz they are not telloing us all the side affects when i told my surgeon and specalist nurse about what i had found out about meds they told me to " stop being pro active and just take the meds . This is the first time in my life i have been pro active and i cant beiliev what i have found just like others here and on other threads

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Apr 22, 2010 08:38AM lucy88 wrote:

Suegirl, that is a new one! "Stop being proactive." We have heard things like "don't research on the internet" and "don't read studies," but "stop being proactive and just take the meds" is really insulting to you.

If this doctor didn't have something to hide they wouldn't tell you to just follow orders and disregard the facts. Most of the oncs circulate a cancer protocol they got from some committee guidelines. It's sad the patients are the ones doing the reading.

"Not knowing when the dawn is coming, I open every door." -- Emily Dickinson Dx 1994, IDC, 1cm, Grade 3, ER+/PR+
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Apr 28, 2010 06:48PM cs7777 wrote:

Hi, I'd just like to point out that Arimidex is not an experimental drug, rather, there have been numerous clinical trials that have tested it in various situations for breast cancer.  For example, one major study was a 10 year clinical trial with over 9000 postmenopausal women who'd had localized breast cancer that finished in 2005.  It's called the ATAC trial, for "Arimidex, Tamoxifen, Alone or in Combination".  It showed that Arimidex was even more beneficial than tamoxifen at reducing later breast cancers  in post-menopausal women who had localized breast cancer (e.g. not metastatic).  As with any clinical trial, side effects were reported.  You can find official info about this trial if you just put ATAC trial and/or arimidex into google.  You can see a list of all clinical trials on arimidex by going to clinicaltrials.gov and putting arimidex into the search box. 

This isn't to say you should or shouldn't take it, I wouldn't try to answer that question for anyone, but just know this drug has been through many clinical trials.

Single MX, implant reconstruction Dx 9/2009, IDC, <1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2-
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Apr 28, 2010 07:12PM wblibrary wrote:

Just an update from me - I've been on Femara for 10 months now and I've stopping it on May 1st for a month to see how I feel.  I am in total agreement that the side effects of the AIs make you feel 20+ years older than you really are.  It's a vicious circle having to take more pills all day because of the one little pill you have to take to keep that nasty cancer way.  I don't believe there has been enough studies done on these drugs.  I really question any statistics I hear.  I think what it boils down to - is a quality of life.  I want mine back! 

Wblibrary Dx 9/2008, IDC, 4cm, Stage IIA, Grade 2, 0/10 nodes, ER+/PR-, HER2-
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Apr 28, 2010 08:08PM - edited Nov 11, 2010 12:58PM by lucy88

cs777,  Arimidex certainly is still an experimental drug. It has only been tested in comparison with Tamoxifen and for recurrence.

"Not knowing when the dawn is coming, I open every door." -- Emily Dickinson

"Not knowing when the dawn is coming, I open every door." -- Emily Dickinson Dx 1994, IDC, 1cm, Grade 3, ER+/PR+
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Apr 29, 2010 10:32AM mollyann wrote:

Dr. Schachter gave a great presentation showing that many therapies that have been studied for recurrence don't necessarily mean you live longer. It's kind of a paradox, I guess.

Look it up. Ask questions. Question authority. Respect other's choices.
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Apr 29, 2010 07:54PM mamafig wrote:

Please read Dr. John Lee's book, "What your Doctor May Not Tell You About Breast Cancer". He also has a web-site.

I had terrible pain and stiffness in my fingers and feet, also numbing-pain and tingling while on Arimidex. My doctor kept telling me it wasn't from the drug even though the side effects didn't start until after I began taking the drug. It reached a point where I was afraid I had permanent nerve damage. A nurse in the Dr.'s office suggested I quit taking it for one month to see if I felt better. Within a few weeks, the side effects began to go away. It took 6 months to completely disappear.

I've been using natural progesterone cream recomended by Dr. Lee for about a year. He says the problem isn't too much estrogen, but too little progesterone to balance it out. I have several friends who have been using the natural progesterone cream for years. It helps hot flashes, fibrocystic breasts (which I had, but now is gone), and osteoporosis. It's absorbed through the skin and must be applied once or twice daily. I don't know of any harmful side effects at all.

I hope this information helps.

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Apr 30, 2010 02:00AM wblibrary wrote:

I was told when I was 32 that my body had stopped producing progesterone. (I had a biopsy taken)  I tried taking supplements to only feel like I was riding an emotional rollercoaster.  I ended up with a condition called andemyosis - tumors inside the uterine wall.  I had my uterus removed.  I was never given any hormones to take after that. My gyn at the time told me I would have probably gotten uterine cancer if I hadn't had it removed - that was 24 years ago.  Why didn't they know that having only estrogen in your system could cause breast cancer if it was the cause of uterine cancer back then.  I have never even heard of a progesterone cream until you wrote your post!  I will see my oncologist the end of May.  I think it's time someone told me exactly what my hormone counts are at this point in my life.  If all it takes is using a cream to get my life back in balance - I'm going to buy a ton!  Thank you so very much!

Wblibrary Dx 9/2008, IDC, 4cm, Stage IIA, Grade 2, 0/10 nodes, ER+/PR-, HER2-
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Apr 30, 2010 06:47PM cs7777 wrote:

lucy88, I have no desire to have a war of words or ideas with you.  I will, however, point out that we're using the term "experimental" in two different ways, and also clarify some of the data. First, "experimental" in the biomed community means that a drug has not yet been demonstrated to be good for any particular thing and is not yet approved by regulatory bodies like the FDA in the US for prescriptions by doctors.  This is the sense in which I'm using the term. 

That said...There are numerous completed clinical trials of Arimidase that have demonstrated that, in certain BC women (postmenopausal, early stage BC, localized disease, and similar), Arimidase as adjuvant therapy was better than tamoxifen at reducing recurrences, and as good as tamoxifen at reducing breast cancer mortality.  In other words, the data show both reduction in recurrances and reduction in BC-caused deaths, the first actually better than tamox, and the latter as well as tamox.  On the basis of such completed trials, Arimidase was approved for adjuvant use in the types of BC patients that had been tested.

You seem to be upset that the clinical trials have not compared Arimidase to a placebo group (no treatment), rather than to tamoxifen.  That's understandable, however, the reason that wasn't and isn't done is because it would have been unethical for a clinical trial to give one of the groups of women nothing (placebo) rather than a drug that had already been proven to save lives (tamoxifen).  Indeed, the regulatory bodies (FDA) would not have allowed such a trial, as it would have condemned some of the placebo-group patients to death unnecessarily.  The final logic is thus: tamoxifen has been proven to reduce BC-caused death very significantly (see below), and head-to-head trials showed arimidex is equal to tamoxifen wrt reducing BC-caused death, therefore arimidex also reduces BC-caused deaths.  In addition, in the populations tested, Arimidase was found to reduce recurrances in even more women than tamoxifen did.  Therefore, for postmenopausal women w/early stage, localized cancers, the field now typically considers the "best" (to treat the BC) drug to be arimidase (or other AI's) over tamoxifen.  Obviously, the choice of whether it's best for any given woman is that woman's choice based on all her considerations of side effects, risks, etc.

As for whether there continues to be experiments on Arimidase, I absolutely agree that new clinical trials (yes, experiments) continue, as the company looks to see how many other BC situations it might be good for (and perhaps other cancers too), and to see how longer-term survival statistics will play out.  And in that sense it is indeed still an experimental drug. 

FYI, you can find a summary of 30+ yrs of tamoxifen data (to which Arimidase is being compared) here:  http://www.ncbi.nlm.nih.gov/pubmed/15894097, with the important mortality summary sentence being: "For ER-positive disease only, allocation to about 5 years of adjuvant tamoxifen reduces the annual breast cancer death rate by 31% (SE 3), largely irrespective of the use of chemotherapy and of age (<50, 50-69, > or =70 years), progesterone receptor status, or other tumour characteristics."

Single MX, implant reconstruction Dx 9/2009, IDC, <1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2-
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Apr 30, 2010 07:38PM - edited Nov 11, 2010 12:56PM by lucy88

---Also, please read that 31% study you sent me carefully. They are citing RELATIVE RISK statistics. They are profoundly misleading in overstating benefit. Please send only ABSOLUTE RISK statistics. As a rule of thumb, if any breast cancer treatment which indicates benefit in the double digits, it is a relative risk stat. Any absolute risk stat will be something like 3% to 8%.

Example: http://www.druginfonet.com/tamoxfen.htm

"Not knowing when the dawn is coming, I open every door." -- Emily Dickinson Dx 1994, IDC, 1cm, Grade 3, ER+/PR+
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May 3, 2010 10:52PM Joy_ wrote:

I suspect the reason for the overall decrease in survival is due to the stripping of estrogen which would give women a life expectancy closer to that of men who have a lower life expectancy than women. 

Life expectancy changes as we get older and according to many factors such as the country and even area where we live, our general health, weight, habits, financial status, whether we are single etc.  I imagine this type of calculation would be difficult, but I know overall that my life expectancy will be shorter the longer I remain on Arimidex, but could be cut considerably more if Arimidex is indeed holding progression at bay.  Also the physical and mental debility and pain from secondaries would make most Arimidex SE's pale in comparison.

This is the question we all need answered.  Are budding mets lying dormant or growing silently so that these drugs can keep the monster at bay, or did the initial treatment clear every trace from our body with no stem cells lying dormant and no need for further possibly debilitating SE's? It would also save a fortune in unnecessary treatment costs and resources.

If we had a test that showed whether the cancer was clear, dormant or active then it would save so many people from unnecessary treatments, worry and reduced quality of life for no benefit and the rest of us could go full steam into aggressive treatments knowing there was a potential benefit to outweigh the risks.

This uncertainty is what eats away at us.  It's the cancer we need to get mad at and the lack of a cure, reliable treatments and tests that will give us some degree of certainty about recurrence.

Dx 7/2/2009, ILC, 4cm, Stage IIIA, Grade 2, 9/24 nodes, ER+/PR+, HER2-

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