Arimidex - Coping with the SE's
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melly, just wanted to chime in, I've been on generics for 3 months now with absolutely no difference. Everyone's body is unique but most people can switch to generics with no problem.
Any SE's I have are sometimes annoying/painful but all manageable. They come and go but the worst was early on and most are just at the annying level, if they show up at all. My oncol. said, as others have pointed out, that they should subside with time, so I'm counting on that!
enjoy, I had some of that in my legs (not quite as frisky as yours, though!) but I take my A first thing in the morning now and it hasn't been an issue.
I haven't been to a hockey game since college, on the spur of the moment one Friday night, my roommate and I hitchhiked (which I do NOT recommend!!!) to Champaign-Urbana and went to a game to try to find her boyfriend there. We didn't know anything about hockey and the teams and the fans and stuff... we sat with the Illinois people in our Indiana U. t-shirts and cheered for Indiana... boy, were we getting dirty looks... my roommate's boyfriend finally found us and moved us, he thought we were going to get beat up but we were just having fun and didn't know better. Silly girls
Thanks for bringing back the memory!0 -
Ya know, you all can come out and visit me in the 'State of Hockey'...I have a big house and the RV in the driveway...and in just a month or so...when the lakes freeze and the hockey rinks go up - we can see hockey players just about anywhere...
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Thank you everyone for taking time to reply. Although I was Dx 2 years ago and have been reading everything on this website, I have been timid to write anything myself. I am overwhelmed by all the responses. My onc can tell me something but he has yet to experience even one of our days. So thanks for your information concerning generic Arimidex. In complaining about my insurance home delivery pharmacy- well they will not take the meds back! They say it's against the law! It's only against the law for them to resell them. I wanted to warn others that may get caught the way I did. Thanks for all your support. I will be reading and caring about all of you often and maybe even summon up the courage to reply again. Big gentle hugs to you all.
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Got all settled in for some McDreamy last night ...then realized it was Wednesday. I was sad!!! Had a bad day ache wise today. Winter is in the air.
Love reading the hockey comments. I do agree on Steve Y...another hottie. Better get on with the dinner clean up...tonite i see my McDreamy. Wish he was my ONC. Now that would be just fine with me.
Redwing fan...talk about hotness on a team...Mike Madano!!!!
Lowrider...You live in hockey heaven...heard many a wonderful story from players from Minni about their childhood on neighborhood ponds.
nite nite ladies
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Mike Modano ~ HOT HOT HOT !!
So glad he's come home to MI.
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Hi Gals - I'm not a hockey fan, but I've been checking out some of these guys you've been talking about and I think I just became one! Hottie hot hot
mellysu - check your prescription - your doctor may have written it as "do not substitue" in which case your pharmacy must dispense the brand name. With it just going off patent, I wonder if the company raised the prices to compensate for the new competition.
I just started taking Arimidex a week ago (generic). So far, so good. Actually, I'd say I might even be feeling a little better than when I was taking Tamoxifen. I have few hot flashes, or at least they are a little less intense. Still having some back pain but had that with Tamox too. I have noticed some twitching of my legs and arms etc.... Is that from Arimidex? I used to have that with Tamox when I first started it. My hubby called me "twitchy". But when I started on Effexor it seemed to stop them. Now they are back. Oh well, there are worse side effects than that! Maybe I'll burn a few extra calories twitching.
Laura
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I've known several people who said they had less SE with Arimidex than with Tamoxifin; especially in the area of hot flashes.
One more hockey story; I attended college at the University of North Dakota, which is a big Divison I Hockey Powerhouse. When I was a freshman they still played in a structure called 'The Barn' (because that is what it was.....a barn). It pretty much guaranteed student alcohol consumption because you would have frozen to death without any anti-freeze flowing through your veins. After that they played in a nice, new arena for many years; until a rich, old alumni died and left 100 million dollars to build a new arena; which is a SHRINE to hockey; marble everywhere, TVs showing the game in the bathrooms so you don't have to miss a minute of the action etc. etc., you walk through it with your mouth open in amazement (google The Ralph Engelsted Arena if you want to check it out).
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So - I'm more confused than ever. First onc said it was 'highly unlikely' score would be high on oncotype and didn't recommend it. Said I should start Arimidex. Second onc recommended oncotype test right off the bat as well as a blood test to determine how well I would metabolize Tamoxifen. I asked why tamox and not Arimidex when I'm post-menop. He said the study comparing results (I guess recurrence but could be wrong) from tamox v. arimidex in post-menop women had a problem, because the tamox women had not been tested for this metabolism. If the body doesn't metabolize it, then you don't get the full benefits and that could have skewed overall results. He also said joint pain not as severe on tamox. Results of the test would determine which to take. Anyone else hear this from onc?
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Hi sunflowers. I guess I wrote the post too fast. Absolutely I want the oncotype test - I was amazed at the first onc -- no way to know until you have the test done!! And, I should have phrased my question differently. For other post-menop women,did your onc recommend taking tamox (instead of Arimidex) for the same reason that the onc gave me - that it may not necessarily be true that Arimidex is superior to Tamox because of flaw in the study? I had been under impression that Arimidex is the new standard care now & better than Tamox for post-menop women. So, this is the first I heard differently. (This onc is listed in top oncs in my area and also Castle Connolly America Top Docs.)
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Having one of my Arimidex days...sore bones in my feet. Good thing "The Wild " play tonite.
Enjoyful and Lowrider....Theodore will be in goal tonite acording to the pregame notes...keep and eye on #4 Clayton Stoner (one of my boys) beautiful eyes.
Ruth...amazing story..the gift that will keep on giving for many decades.
Hobble to the kitchen and get dinner started...hate these days,glad they do not happen often. Tomorrow will be better.
GAME ON !!!
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Dear Janet,
I found your second oncs recommendations very interesting. I have a similar diagnosis to yours and I did have the onco. My score came back as a 16 (which means 10% recurrance odds with the assumption of taking tamox for 5 years). My onc was surprised the score was that high. I did have a Ki-67 score of 14 which is a proliferation score (kind of like how "busy " your tumor is) which is from your pathology report, not the onco test. I'm very interested in the possibility that he wants you to take tamox possibly. Interesting take on the studies too.
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Janet,
My onc has been telling me the same thing about the Arimidex. It is superior to Tamoxifen for post menopausal women with less side effects. We all know that there is a wide range of SE for each med as well as each woman. Serious SE including T causing uterine CA and blood clots, but A has a side effect of heart problems (among other things).
It was my BS who recommended seeing if I was a Tamoxifen metabolizer, not because of a possible flaw in the study, but rather because the Tamoxifen won't do a number on my bones the way the Arimidex will. I like the idea that T could be as effective as A for both reasons and am considering whether I will ask to switch from A to T siting the new reason you brought up.
Thanks !!!
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I just pulled this off the BCO home page; it's from just last week.
Top Choice for Breast CA Is Aromatase Inhibitor
Many 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.
Hot flashes and night sweats -- called vasomotor symptoms -- are side effects of both tamoxifen and the aromatase inhibitors, though they're more common with tamoxifen. Joint pain is a more common side effect of the aromatase inhibitors. Both tamoxifen and the aromatase inhibitors can cause serious side effects. Treatment with either tamoxifen or an aromatase inhibitor can lead to dangerous blood clots in rare cases. This complication is more common with tamoxifen. Also, aromatase inhibitors can weaken bones and make women more likely to break a bone.
Tamoxifen and Arimidex are available as generic medicines, so these may be much less expensive than the other two aromatase inhibitors (depending on your insurance coverage).
If you're a post-menopausal woman who's been diagnosed with hormone-receptor-positive, early-stage breast cancer, keep two things in mind when you and your doctor are deciding on an adjuvant hormonal therapy plan:
- Every woman responds differently to treatment. What works for someone else may not work for you and what works for you may not work for someone else.
- Your treatment plan isn't written in stone. You can always switch medicines if another treatment has greater benefits and/or fewer side effects.
Ask your doctor about the differences in benefits and side effects between aromatase inhibitors and tamoxifen, as well as the pros and cons of monotherapy vs. sequential therapy.
If you're already taking tamoxifen, ask your doctor if switching to an aromatase inhibitor would be a good idea. Together, you can decide on a treatment plan that's best for YOU.
Research News on Hormonal Therapy
- ASCO Breast: Ten Years On, Anastrazole Still Tops SERM
- ASCO Breast: Preop Hormones Alter Mastectomy Course
- Top Choice for Breast CA Is Aromatase Inhibitor
- AACR: Two Options for Breast Cancer Prevention
- EBCC: Beta-Blocker Role in Breast Cancer Examined
(MedPage Today) -- Aromatase inhibitor therapy should be considered for all postmenopausal women with hormone receptor-positive breast cancers, the American Society of Clinical Oncology reemphasized.
An update to their guidelines on adjuvant endocrine therapy again supported the aromatase inhibitors, saying they provide better disease-free survival than tamoxifen (Nolvadex) in this patient population.
But what strategy to use them in -- upfront as monotherapy or sequential after two to three years of tamoxifen -- remains unresolved, according to the update committee led by Harold J. Burstein, MD, PhD, of the Dana-Farber Cancer Institute in Boston.
ASCO has recommended an aromatase inhibitor for these patients since 2004, but provided no guidance on the optimal duration until now.
The update, published online in the Journal of Clinical Oncology, recommends no more than five years' duration for aromatase inhibitors.
If sequential therapy is the strategy used, the available evidence supports an aromatase inhibitor after two or three years of tamoxifen for a total of five years of adjuvant endocrine therapy.
If patients discontinue initial aromatase inhibitor use before the full five years, tamoxifen can be considered for the remainder of the five years.
If an extended strategy of up to 10 years of total endocrine therapy is used, the order should be five years of tamoxifen followed by three to five years of an aromatase inhibitor, according to the guidelines update.
The aromatase inhibitors appear to be interchangeable such that patients who can't tolerate one may be advised to consider not only tamoxifen but another aromatase inhibitor, Burstein's group wrote, noting this was their clinical opinion without randomized trial evidence.
The choice of when and whether to use an aromatase inhibitor for an individual patient may depend on the distinct adverse effect profiles of tamoxifen and aromatase inhibitors and patient preferences, the update writers acknowledged.
Aromatase inhibitors aren't less toxic or better tolerated than tamoxifen, rather "both drug classes have distinct adverse event profiles that are relevant to individualizing therapy for patients," according to the update.
The newer class appears to increase serious cardiac disease incidence, though by less than 1% compared with tamoxifen, as well as high cholesterol, hypertension, bone mineral density loss, fracture, uterine cancer, benign endometrial pathology, hysterectomy, and vaginal discharge.
Tamoxifen, on the other hand, raises venous thromboembolic event risk by 1% to 2% compared with the aromatase inhibitors and is associated with more hot flashes.
The advantage in reducing risk of recurrence with the aromatase inhibitors in absolute terms is modest, "typically amounting to less than 5% through multiple years of follow-up," and without any difference in overall survival, Burstein's group wrote in the guidelines.
For the systematic review, they reviewed 12 prospective, randomized trials of adjuvant aromatase inhibitor or tamoxifen use in different strategies -- initial, sequential, or extended therapy after five years of treatment with adjuvant tamoxifen.
The evidence didn't support using any markers to determine who would benefit most from which strategy, the researchers noted. They specifically recommended against use of CYP2D6 genotype to select adjuvant endocrine therapy.
The only important factor is menopausal status.
Women who are pre- or perimenopausal at the time of breast cancer diagnosis should only get tamoxifen, the guideline update cautioned.
Burstein disclosed that he had no finanical conflicts of interest. Coauthors reported consultant or advisory roles with Pfizer and Novartis; honoraria from Novartis, Astra Zeneca, and Pfizer; and research funding from Novartis and Pfizer.
Primary source: Journal of Clinical Oncology Source reference: Burstein HJ, et al "American Society of Clinical Oncology Clinical Practice Guideline: Update on adjuvant endocrine therapy for women with hormone receptor-positive breast cancer" J Clin Oncol 2010; DOI: 10.1200/JCO.2009.26.3756.
Everything Helps.
Please help Breastcancer.org bring you the latest news on hormonal therapy by making a tax-deductible donation today.
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JanetinVirginia -
Your new onc sounds like someone who thinks for himself. His points seem to make sense.
Does anybody know when was the oncotype test developed? Was it before or after the ATAC trials?
We don't have the oncotype test in Canada - don't know much about it, but, it is very likely that any Canadians participating in the ATAC trials did not have the test done. It would be interesting to see the results of a study on 'good Tamoxifen metabolizers' vs 'good Aromates Inhibitors metabolizers' . What produce would be on top? Sure would be nice to know.
It's interesting the BCO articles say not to use the CYP2D6 (is that the same as the oncotype test?). No reason is given for not doing the test, I wonder why they recommend not doing the test.
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Dear Molly,
The test became available in 2004. In 2007 the ASCO published a report recommending it, and then in 2008 the NCCN National Comprehensive Cancer Network recommended it as a guideline for MDS. It states right on my results sheet that they are based on a clinical validation study of 668 patients from the NSABP B-14 study N Eng J Medincine 2004. ASCO recommended aromatase inhibitors from the ATAC trial 10 years ago (the info from10 year follow up).
On another note, I viewed a really interesting video from UK yesterday (one of the nurses here on line suggested it to me). I hope this link will work for you it was free but I'm not a big computer person: U tube ECCO15-ESMO 34, Berlin 2009. The man seems very logical to me.
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Molly, the Oncotype assay was being tested and validated after the ATAC trial was already well underway.
The 3-year results of the ATAC trial (average length on treatment = 33 months) were published in Lancet in 2002: http://www.ncbi.nlm.nih.gov/pubmed/12090977
Apparently, the first results of studies on the Oncotype test were reported in 2003: Paik S, Shak S, Tang G, Kim C, Baker J, Cronin M, Baehner R, Walker M, Watson D, Park T, et al. Multi-gene RT-PCR assay for predicting recurrence in node negative breast cancer patients – NSABP studies B-20 and B-14 [abstract] Breast Cancer Res Treat. 2003;82:A16. [presented at the 2003 San Antonio Breast Cancer Symposium]
The first formal publication I could find about Oncotype testing came out in 2004: http://www.ncbi.nlm.nih.gov/pubmed/15591335
It took much longer for the test to be accepted for routine use, though. Some insurance companies here in the U.S. still weren't paying for it even in early 2008 when my BC was dx'd.
More recently, tissue samples from women who've been in the ATAC trial have been used to validate the Oncotype test. The latest example is a paper that just came out this year, in which Oncotype scores were shown to predict recurrence risk in women who were on Arimidex: http://www.ncbi.nlm.nih.gov/pubmed/20212256
otter
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Excuse me for interrupting-this is far away from the current interesting topic, but:
UGH!!! Two weeks on Arimidex, and my hair is slowly beginning to leave. Any ideas as to when/if it will grow back? I have been using Rogaine for years, in an effort to discourage my genetic predisposition to thinning hair- Mother and her sister were in wigs at 40...
paamboli
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Have you tried Nioxin shampoo & conditioner?
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Have you tried taking Biotin??? When my nails started acting up they put me on it...I still take it daily. Loaded with B vitamins...I take 1 daily. It took about 4 weeks to see a differance. My hair has thickened up and grows like crazy. I now have to color my hair every 21/2 weeks. (I know you girls are surprised that I do that) lol
It is getting cold here and I do not like it...makes my old bones hurt. Thank goodness for heated car seats...greatest invention ever.
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paamboli - the first two years on Arimidex - lost a ton of hair - not so noticeably the last 3 years. I have heard good things about Biotin although haven't tried it.
Otter/Valgal - thanks for the info. Otter for the last link - did I read it correctly - did they say they went back and tested for Tamoxifen metabolizers and the original results still hold?
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Many thanks for your good advice!
paamboli
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The home delivery pharmacy and my insurance company decided today to refund my money and let me keep the brand Arimidex! If anyone needs someone to fight for them, I will be happy to help! They just hope to intimidate you enough so you will go away. I count this as a victory for us all.
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mellysu1022 - VICTORY!! You are exactly right. They just put up an initial fight and most people just walk away.
paamboli - Did the Rogaine help? I've been contemplating. I've only just recently switched to Arimidex (2 weeks) but my hair has been thinnning already from being on Tamoxifen and having the ovaries removed last year.
Awesome info on the Biotin. I will have to add that to the plethora of other meds and supplements that I take now.
Laura
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mellysu 1 pharmacy 0 Yay!
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JanetinVirginia- that was adorable! It made me feel strong. Thanks
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Good job, mellysu!
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Hi Laura,
I've been using Rogaine for about the last ten years, and until the advent of A in my life, I have had enough hair, although by no means is it thick or remotely awesome. My mother didn't- her scalp was visible all over her head. The stuff works best for people with a genetic predisposition for hair loss, but may also work on independently thinning hair in some cases. I do not know if it will keep the effects of A at bay, but guess I'll find that out soon enough.
Brand Rogaine in the shops is quite expensive, around $45 for one month's supply. I usually get 3-month's supply on eBay for @ $35, or I buy the 3-month CVS kit for @ $25. I do not think that there is much difference between the two. Basically the same ingredients, but don't let the drugstore brand get in your eyes because it stings. You are supposed to use it 2x a day forever.
I'm going to get some Biotin tomorrow. Any idea of how many milligrams works best?
paamboli
Diagnosis August 2010, IDC 1.1 cm. 0/2 nodes, ER+ PR+HER-
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Hi Paamboli
I just googled and found the normal dose for Biotin would be 30 mcg/day. Then saw an ad for 2500mcg tablets! yikes. Reading up, it is for treating Biotin deficiency, which is rare. The deficiency itself causes hair loss so maybe that's where the idea came from? Info also says it has not been proven to help the skin,hair or nails, but it sure seems like there is anecdotal evidence out there. I will try it for a month or two and see what happens. Can't hurt. I may skip the Rogaine for now. I did buy some Nioxin shampoo, conditioner and scalp treatment. It does make your hair appear to be thicker for sure. I think mostly it's the scalp treatment you put on and don't rinse off that is responsible for most of it. The down side is that my hair feels a bit "straw-like" when I use it.
Heading to CVS on Friday to get Biotin.
Laura
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Samsue, Yes ,I am taking lot of supplements made from organic products imported from "AMWAY" an American Co. such as Soy protien, Bio-C, Cal-Mag and multivitamin tabs,and glucosamine tabs on need basis. These items are expensive in India but I have ben taking it for the last 5 years. I got benefitted I know, even my doctor allows me at the first instant. You just practice slow walking , try few steps first and them increase number of steps gradually. If you can do breathing exercises by sitting cross your leg - to breathe in and out for about 10 minutes daily in the morning before breakfast. Drink 2/3 litres of pure water daily. You are in a highly developed country, I know you know better than me but I am sharing my experience with you , you just try and see. result.
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Do you have to buy the B vitamins individually or is there a brand where you get all of them in one pill?
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