Arimidex
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Hi Kathy044. Thanks for the response. I have been done with chemo for 18 months and it wasnt until my last visit that my oncologist said no iron pills. As I said, I dont know the reason. She just told me that iron suppliments were not good for cancer patients. Now I guess I will have to find out why!
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My mom got horrible hot flashes from Tamox. She also got the start of osteoporosis. I really don't think one is any better than the other as far as side effects.
I decided to quit worrying about what to eat and not eat and all the rest. It can drive you crazy. I take all my vitamins daily and get lots of sunshine and outdoor activities, so I think I'm doing OK. I do avoid soy, but don't worry about all the other things.
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The Vitamin D level of 50,000 must be a typo.
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Susand, thank you so much for the heads up on iron. I'll take folate and B12. You know I did ask my onc if I should take iron for anemia and he said "yes" in a very wishy washy, unconvincing way. I've learned to come here to the experts for the right answers and I'm so grateful. Thank you very, very much. Best regards and my best wishes to you, Julia
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I just got my bloodwork back and my D levels are at 23. What did you do to raise them? I've been taking calcium supliments with D, D alone and my multi has D. And, this is the bloodwork the Onc didn't want to do. Had the PCP do it for me.
Also, I see an acupunturist and he said that our bodies require estrogen and it come from the fatty tissues, so we gain weight to counter act not getting the estrogen blocked by the A's.I did loose some weight when I cut out the sugar, white flour and coffee creamers! I've been trying the anti-estrogen diet and looking at what has soy in it. I was amazed to find soy in my water packed tuna!
Thanks for all the great info.
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Just joined Breastcancer.org and am experimenting with the posting process. I've done mastectomy, chemo & radiation and Arimidex is next for me. Interested to have read the posts on this topic ~ Thanks for sharing!
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Hi Grayt, glad you are done with the really creepy treatments and are joining us. I think they still only let you do 5 posts a day until you reach 50 posts, which is frustrating at the time, and which I didn't think they made very clear (although you can private message people as much as you want). This is a good place to come for questions, information, concerns, and sometimes even for some fun! 'See' you soon. Ruth
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Welcome Grayt to the "A" team. It has its ups and downs but like all of us you can deal with it and get through it. We cover everything and sometimes even discuss "A". Laugh, cry, SCREAM, and help each other. Best of luck to ya.
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Hi, Ladies.
I seem to be alone in my decision not to take Arimidex - notwithstanding my oncologists' emphatic recommendations to the contrary. I also declined to take tamoxifen with my first occurrence of breast cancer in 1997 and had l2 years without a recurrence following lumpectomy and radiation. Part of my decision is that I have only one positive receptor, so I only get a 40% benefit, but this just makes my decision easier. Even if both receptors were positive, I don't think I would try it, as I initially decided, given my doctors' assurances that most women have some joint pain and adjust easily. I had extensive neck surgery just prior to this recurrence in October 2009 and after the treatments and surgeries, it's important for me to feel strong and healthy, which I did not experience for way too long. In general, unless I'm facing an imminent threat from a disease, which hopefully I am not (negative nodes both occurrences, chemo and MX the second time around), I don't like medications that have not been tested over a long period of time, especially when they interfere with my body's natural processes, like producing estrogen after menopause - even though estrogen is not a good thing once you've had breast cancer. I've already had the unpleasant experience attendant to other untested treatments in my youth, like high estrogen birth control pills and a copper IUD, and I prefer a conservative approach until these things are more established. I also note the problems they're now finding out about Fosimax and Boniva, after presenting those drugs like a panacea. We all make these most personal decisions in our own most personal ways, so I'm wondering if anyone else made this decision at some time and if there are any other skeptics out there? Wishing good good luck to all.
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Hi there, cs718,
You are not alone in refusing Arimidex. Actually, something like 40% either never start or stop taking it once they get debilitating symptoms.
If Arimidex had actually been proven to prolong survival maybe more women would take it. But as you say, it's basically a new drug. The oncs are betting fewer recurrences translates into longer survival but it doesn't look like the studies are showing that yet.
To each her own.
Good luck!
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Oh man, I have such a different view that I shouldn't even comment (but here goes)..... my pathology report originally came out TN, so I cried tears of JOY when I turned out to be estrogen positive and I could take something that could reduce my chances of reoocurence (40% benefit is HUGE in my book!!). Once you face an 'imminent threat of diease', you are Stage IV.....not a place that I ever want to be, especially if I could have possibly prevented it (and I have not had problems with Arimidex, and I feel very strong and healthy). I'd sure try it before I rejected it.....estrogen positive cancers can come back decades later, and .........not to mean, but perhaps tamoxifin COULD have prevented your present situation. Something maybe to think about anyway. Best of Luck. Ruth
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ruthbru, where did you get that 40% less recurrence statistic? 40% less than the women who didn't take Arimidex? 40% less than a placebo group?
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mollyann, I was referring to cs718's comment that she'd get a 40% benefit....better ask her for the specifics...........
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Hi cs718,
I think that everyone's choice with their cancer treatment is a very personal decision. I respect your decision and even admire it. I wish I had the courage to choose not to take Arimidex. I know It would raise my quality of life. I chose a different path in that I have opted for every possible option that was available. The change in diet and exercise are the only changes that I know benefit me. As for the oophorectamy, Arimidex, and prophylactic Mx who knows...only time will tell.
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cs, I am faced with the "take it or not" decision here in about 10 days and I really feel that if the docs won't even test my ER/PR levels, how can I know it is working? I feel that if they tell me to take this and I end up with a recurrance, how do I know if the A even worked for me originally? They have to prove to me it is working. Then I will take it. But they don't test for ER?PR so I will take it ONLY if the onc tests my ER/PR.
So meanwhile, I have been taking aromatase inhibiting supplements and have completly modified my diet to include no estrogen or phyto-estogenic foods. I tested myself for ER/PR and am awating the results. I believe I can keep my estrogen low and am working with Dr Joe Veltmann on supplements and dietary changes I can do to keep the ER metabolites low and metabolizing to the good rather than bad.
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This was just posted as Breaking News on BC.org and I think it is worth reading.
Top Choice for Breast CA Is Aromatase InhibitorMany post-menopausal women take hormonal therapy medicine -- either an aromatase inhibitor or tamoxifen -- after breast cancer surgery and other treatments for hormone-receptor-positive, early-stage breast cancer. Hormonal therapy can reduce the risk of the cancer coming back (recurrence). Hormonal therapy used in this way is called adjuvant hormonal therapy.The aromatase inhibitors are:Arimidex (chemical name: anastrozole)Aromasin (chemical name: exemestane)Femara (chemical name: letrozole)Most women take adjuvant hormonal therapy for 5 years.The American Society of Clinical Oncology (ASCO) has issued new guidelines on adjuvant hormonal therapy medicines. ASCO is a national organization of oncologists and other cancer care providers.The new ASCO recommendations for adjuvant hormonal therapy treatment for post-menopausal women diagnosed with early-stage, hormone-receptor-positive breast cancer are:An aromatase inhibitor is preferred overtamoxifen. This recommendation is supported by a number of studies showing that women treated with an aromatase inhibitor are somewhat less likely than those treated with tamoxifen to have the cancer come back.Most women should take adjuvant hormonal therapy for a total of 5years. Options include:taking the same hormonal therapy for all 5 years (monotherapy)taking tamoxifen for 2 or 3 years and then switching to an aromatase inhibitor until hormonal therapy has been taken for a total of 5 years (sequential therapy)taking tamoxifen for 5 years if a woman started taking an aromatase inhibitor but had to stop taking the aromatase inhibitor before completing 5 full years of treatment (perhaps because of intolerable side effects)While not routine, some women may benefit from taking adjuvant hormonal therapy for 8 to 10 years (called extended adjuvant therapy). In these cases, ASCO recommends 5 years of tamoxifen followed by 3 to 5 years of an aromatase inhibitor.ASCO doesn't recommend one aromatase inhibitor over another -- they're considered interchangeable. If side effects from one aromatase inhibitor are intolerable, switching to a different aromatase inhibitor rather than tamoxifen may make sense.ASCO didn't recommend routine genetic testing for the CYP2D6 enzyme when deciding which hormonal therapy medicine to use. The body uses the CYP2D6 enzyme to turn tamoxifen into its active form. Women who make low levels of this enzyme may not get all the benefits of tamoxifen treatment.ASCO recommends that pre-menopausal women take only tamoxifen as adjuvant hormonal therapy.Research shows that aromatase inhibitors are generally somewhat better than tamoxifen for reducing the risk of recurrence in post-menopausal women diagnosed with early-stage, hormone-receptor-positive breast cancer. Still, for a number of reasons, including side effects and cost, tamoxifen may be a better choice for some women
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It would be nice if the "breaking news" provided any evidence that AIs actually improved survival as an adjuvant therapy. Guidelines, as everybody knows, only means the guideline-writers voted.
Notice there is no evidence in the guidelines because the evidence doesn't exist.
Notice there is not one word about survival in the press release?
God, I hate being a guinea pig.
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It is hard...when talking to my oncologist at my last recheck, we visited about how, if I had been diagnosed today, with the latest research, I would have been given a different (and less toxic) chemo regimen. But at that point, what I did was standard of care and it was given to me with the best knowledge available at the time, and I am glad that they ARE making progress and continue to learn better ways to fight this diease, even if it makes me a 'guinea pig'.
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I only copied and pasted the synopsis of the article. There might be more detail in the full article.
At any rate, I am convinced. I put my money where my mouth is by paying $388. a month out of pocket for the last year. So glad now that Arimidex has gone generic and price has dropped! I am 99% ER+ so feel like I get maximum benefit from the drug. I am also being pro-active by losing weight and exercising, avoiding soy, following a healthy diet, little alcohol, plenty of sleep, reducing stress (as much as humanly possible), getting too many mammograms, follow up with onc (blood work and TMs) , thinking positively, taking Vit D w/ calcium, one aspirin a day, and knocking on wood when appropriate. :-) What more can a girl do?
Pam
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Hi BarbaraA,
Don't forget to tell us what your ER.PR result is. We all want to hear about getting low estrogen levels whether we do it with a drug or by natural sources.
Glenis
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Barbara and Mollyann,
The whole AI story goes back to when Tamoxifen was the only option available. And it was shown to have vastly improved disease-free survival over not doing any hormonal therapy for women who test ER+. Then AIs were developed and demonstrated to improve survival by 2-3 percentage points over Tamoxifen for post menopausal women. Thus, this is now the hormonal therapy of choice.
I have read the literature, but of course, can't find it. But no doubt to me that there was a benefit in going down this road. I had initially greatly underestimated the benefit. In my case....and these are roughly right statistics. My relative chance of being alive in 10 years:
1 - Surgery alone 57%
2 - Surgery plus chemo (AC + T DD) 72%
3 - Surgery plus chemo plus anastrazole for 5 years 83%
4 - Chance of dying from something else 4%
5 - Real mortality risk from BC 13%
These are for a 59 year old woman in excellent health otherwise. You can see my diagnosis below. The benefit from AIs would be different depending on diagnosis.
I believe that I can cut my breast cancer mortality by HALF by doing three things which have been shown to do this in three observational studies of BC patients.
1 - Get my weight down about 7 more pounds (I have lost nearly 20)
2 - Exercise
3 - Aspirin therapy
These are the big ones. If I had been Stage III, I would have wanted to do bisphosphonate therapy as well. In this case, not doing AIs would increase my risk of not being here in 10 years from 13% to 24%.
Think this is well worth my putting up with the minor side effects.
This is also where the 40% increased risk of mortality comes from. For me, almost 50%.
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Claire, you sound lke you're doing great. Excercise is probably a huge treatment and blood sugar modulator which is a huge risk factor.
But Arimidex still has no survival stats available so you have to delete AIs from the survival equation.
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American Society of Clinical Oncology Clinical Practice Guideline: Update on Adjuvant Endocrine Therapy for Women with Hormone Receptor-Positive Breast Cancer
Published ahead of print on 7/12/10
Harold J. Burstein, Ann Alexis Prestrud, Jerry Seidenfeld, Holly Anderson, Thomas A. Buchholz, Nancy E. Davidson, Karen E. Gelmon, Sharon H. Giordano, Clifford A. Hudis, Jennifer Malin, Eleftherios P. Mamounas, Diana Rowden, Alexander J. Solky, MaryFran R. Sowers, Vered Stearns, Eric P. Winer, Mark R. Somerfield, Jennifer J. Griggs
Objective: To develop evidence-based guidelines, based on a systematic review, for endocrine therapy for postmenopausal women with hormone receptor-positive breast cancer.
Methods: A literature search identified relevant randomized trials. Databases searched included MEDLINE, PREMEDLINE, the Cochrane Collaboration Library, ASCO and SABCS. The primary outcomes of interest were disease-free survival, overall survival, and time to contralateral breast cancer. Secondary outcomes included adverse events and quality of life. An expert panel reviewed the literature, considering twelve major trials, and developed updated recommendations.
Results: An adjuvant treatment strategy incorporating an aromatase inhibitor (AI) as primary (initial endocrine therapy), sequential (using both tamoxifen and an AI in either order) or extended (AI after five years of tamoxifen) therapy reduces the risk of breast cancer recurrence compared to five years of tamoxifen alone. Data suggest that including an AI as primary monotherapy or as sequential treatment after two to three years of tamoxifen yields similar outcomes. Tamoxifen and aromatase inhibitors differ in their side effect profiles and these differences may inform treatment preferences.
Recommendations: The Update Committee recommends that postmenopausal women with hormone receptor-positive breast cancer consider incorporating an aromatase inhibitor therapy at some point during adjuvant treatment, either as upfront therapy or as sequential treatment after tamoxifen. The optimal timing and duration of endocrine treatment remain unresolved. The Committee supports careful consideration of side effect profiles and patient preferences in deciding whether and when to incorporate AI therapy.
ASCO’s practice guidelines reflect expert consensus based on clinical evidence and literature available at the time they are written and are intended to assist physicians in clinical decision-making and identify questions and settings for further research. Due to the rapid flow of scientific information in oncology, new evidence may have emerged since the time a guideline was submitted for publication. Guidelines are not continually updated and may not reflect the most recent evidence. Guidelines address only the topics specifically identified in the guideline and are not applicable to interventions, diseases or stages of disease not specifically identified. Guidelines cannot account for individual variation among patients and cannot be considered inclusive of all proper methods of care or exclusive of other treatments. It is the responsibility of the treating physician or other health care provider, relying on independent experience and knowledge of the patient, to determine the best course of treatment for the patient. Accordingly, adherence to any guideline is voluntary, with the ultimate determination regarding its application to be made by the physician in light of each patient's individual circumstances and preferences. ASCO guidelines describe the use of procedures and therapies in clinical practice and cannot be assumed to apply to the use of these interventions in the context of clinical trials. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of ASCO's guidelines, or for any errors or omissions.
Last updated: 7/12/10
PDF (abridged)PDF (unabridged)Slide Set (pps)Slide Set (pdf)Patient Guide2004 Update2003 UpdateOriginal 2002 Assessment
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Wow, pj, tons of informaton. I peeked at it, and will have to set aside some time to wade through it. Thanks.
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It would be nice if the "breaking news" provided any evidence that AIs actually improved survival as an adjuvant therapy. Guidelines, as everybody knows, only means the guideline-writers voted.
Notice there is no evidence in the guidelines because the evidence doesn't exist.
Notice there is not one word about survival in the press release?
God, I hate being a guinea pig.
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what's the scoop on a generic for arimidex. anyone have any info
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ejnova,
Generic versions of Arimidex, Anastrazole, began appearing in US pharmacies the first of July. There are several different companies who rec'd dFDA approval. The prices are all over the place, most still pretty high if you are on your own. However, if you have coverage through an insurance company, even if you have not met your deductible or co-pay requirements, you might save a lot. As I said, my personal cost went from $388 to $28.!!!!! Costco seems to have the best private payer price. See the thread "Generic Arimidex Cost."
Pam
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Excuse me ladies. There are very solid statistics out there about disease-free survival. They start with Tamoxifen. Here is a link summarizing a number of studies:
http://www.nlm.nih.gov/databases/alerts/tamoxifen.html
Then, AIs show an improvement over this for ER+ post menopausal women vs tamoxifen. That is why they are the Standard of Care.
All these topics have been researched extensively. Tens of thousands of women, so no worry about being a "human guinea pig" here.
Unfortunately, the article you are citing assumed you had this background information. It is all there on the internet if you look for it. The best source is the Journal of Clinical Oncology (JCO), but there are other sources confirming their findings.
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"Disease free survival" statistics just means less recurrence from breast cancer.
It doesn't refer to overall survival meaning how long the patients actually live. The research on Arimidex has only been comparing it with Tamoxifen for less recurrence. There are no overall survival stats on Arimidex comparing Arimidex takers with placebo takers.. Zero. Zip. Nada. Ask your oncologist.
And because Arimidex is so hard on the bones and heart, researchers don't know yet if women taking this experimental drug will longer or shorter lives.
Just like in the 1990s when they were giving out chemo so freely to ER+ patients as standard of care because it seemed like a good idea. Until they noticed most hormone positive women didn't live any longer after chemo than the ones who refused it.. Here we go again with Arimidex ----no overall survival evidence, just less recurrence.
Fairy pointed out, we are the ongoing clinical trial but without the disclosure. Guinea pigs.
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From an Arimidex taker. First time round I had allergic reaction to chemo and T put me in hosp I went almost five years with nothing as nothing was offered. It came back. I'm now NED and I want to stay that way, yes I live with se's but believe me they are much better than active BC and If my life is extended just one day..........IT"S WORTH IT !!!!!
I don't care if' I'm a guinea pig.
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