For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Doximommy I have to say my QOL on Anastrozole is fine. This March will be 2 years. I'm a lot less stiff this year. Makes me wonder if my stiffness last year might have been some old SE from Herceptin.
There is one gal we (bc.org forums) lost this fall. She was a 20+ year survivor, 16 of them with mets. Initially she had DCIS. No tamoxifen (don't think they had ALs back then) was recommended. 4 years later she had mets. Granted there is no guarantee that the tamox would have prevent mets for sure but I know she always wondered.
Remember you can always quit if your QOL is effected but many of us do just fine. Most people post their complaints because they are looking for help. Very few of us post if we don't have issues… and I'm sure there are more of us that don't post.
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I have been on arimidex for 3 or 4 Months now after switching from femara due to terrible aches. Arimidex has seemed somewhat kinder although each month I get a new symptom
I haven noticing that at night restless leg symptoms are contributing to my insomnia. I am really having trouble falling asleep almost like I am on steroids. The past two nights I have taken melatonin and it's helped. No hangover in The am
What is really bothering is my back. I get this ache that moves from side to side , never constant. Its not like a bruised feeling or painful , just dull a he that starts on one side , goes away then comes back on the other side. Then goes away then co es back in middle of back. At first I thought it was related to my fatty liver and some of the aches I sometimes get after I eat. It becomes a bit more pronounced as soon as i take my nightly dose of arimidex.
Does anyone else have Back aches? Every time a new side effect comes up I tend to dwell on it0 -
lago/ you're right that people who have no issues go away and live their lives, and people with complications go on forums to complain. But, there's another class of those who post because they're nervous and scared. I have nothing to complain about yet...except for sore boobies, but that will pass, so I'm in the third category. I'm just a side-effect magnet, and am anticipating having them all!
I know that my MO will insist that I try it, and if it goes badly, insist that I try another one. It all sounds like poison to me.
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Butterfly: My hair is growing like a weed. I measured it last week--6 months pfc and it's 3 inches. Very, very thick. I have had it cut 4 times. Each of us is different. I have been taking 5000 mcg og biotin daily and used Bosley shampoo/conditioner (similar to Nioxin) up until a month ago. Again, each of us is different. I had thick, but fine hair before all this mess.
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Thank you Karen, just at the nervous I will be bald for forever.
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I have a question about completing the 5 years of Arimidex. I finished my five years on Dec 24th, yeah! So when will I be able to lose some of the 25 lbs I put on over the last 5 years? I have heard (read on these boards that it takes 3 months) to have the Arimidex out of our systems. Is that true? I am currently on weight watchers and not losing but .04oz at a time. Am I wasting my time and money. Should I wait another 3 months before trying to lose weight? It is frustrating.
I do water arobics and Zumbia 3 days a week. Thanks for any suggestions.
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I have a question about completing the 5 years of Arimidex. I finished my five years on Dec 24th, yeah! So when will I be able to lose some of the 25 lbs I put on over the last 5 years? I have heard (read on these boards that it takes 3 months) to have the Arimidex out of our systems. Is that true? I am currently on weight watchers and not losing but .04oz at a time. Am I wasting my time and money. Should I wait another 3 months before trying to lose weight? It is frustrating.
I do water aerobics and Zumbia 3 days a week. Thanks for any suggestions.
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Desny, come over to Wednesday Weigh In on the Fitness Forum if you want some 'trying to lose weight' friends. I did not gain while on, and I have not lost while off without working at it..... just the same as always (darn!).
Also check out the 'Lets Post Our Daily Exercise' also on the Fitness Forum. We have a lot of fun over there!
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Doxiemommy - I, too, am a side effect magnet!!!! And I have to be honest: after my BMX in December 2011, when no invasive cancer was found (even after showing up in biopsies), all margins were clear, and there was no lymph node involvement, my MO was STILL insisting on my taking Anastrozole for five years.
Let's see...at that point my risk of recurrence was 1 - 2 %.
And you want me to take this drug that could give me horrific side effects and make my life miserable for the next five years? I DON'T THINK SO!!!!
Sheesh, I was angry.
I even joined a weight loss program and lost a ton of weight just so she couldn't tell me how much estrogen was produced in body fat. (I was post-menopausal, post-hysterectomy, but 100% ER+, and very overweight.)
However, somewhere along the line, I realized that my MO really did have my best interests at heart. I wasn't arguing about side effects I already had, I was bitching about SEs I MIGHT get.
It all came from reading the horror stories here on BCO....from women who were looking for answers and support for their issues. I never did find anyone who posted "Gee, I just started taking the AIs, and this is so much fun!"
And to top it all off, I could hear my sweet elderly mom's voice in my head saying "Honey, you won't know until you try." Mom was a BC survivor for 28 years, and eventually passed from end-stage Parkinsons.
I thought about what a big whiner I was being, and how there were so many women who wished that they could take an AI and benefit from it.
After several heart-to-hearts with my MO, and explaining how important my quality of life is to me, she absolutely agreed, and we decided I would try the Anastrozole. If I had side effects, she would see if something else worked, if not, she'd be the first to take me off the drugs.
I've been on Anastrozole for four months. I had a bout of hair loss which resolved quickly with added Biotin.
I am feeling stiff and achey, but I've also just come off a big weight loss program, and went from exercising daily, to not exercising at all since August (injuries and illnesses got in the way). The aches are bearable and I know they will resolve once I start moving again.
Losing weight reduced my risk of BC recurrence by 23%. Taking the Anastrozole has further reduced that risk by 50%. That sounds really good to me.
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TO TAKE or NOT TO TAKE
I've had BC twice. Both primary.First time was 1990, I was young (37+) and at the time even the tamox was new. I had a MX and 5+ months of prophylactic chemo. All together maybe 6 months of tamox, because as I said it was pretty new then and not yet studied enough to give it longterm. Second diagnosis in 2007, and absolutely not mets but primary. I had been taking evista (a "cousin" of tamox) for my starting osteoporosis, My MD felt that if I needed that for osteo, it might also help as a deterrent like tamox.
In any case after the second MX, chemo, 1 year of herceptin and 5 years of tamox, I started AL this past July. Before joining the forum this summer because of LE, I had no idea about all the possible horrible SEs there could be. In the meantime I have only very mild SEs of stiff knees, that losen up when I move around. No specific weight gain, depression, itching, hairloss or any of the other lovely things mentioned. Therefore, I would advise you to try the AL. You can always see how you react to it and change meds.
I understand how you feel. When I got chemo the second time around, I got a total of 4 rounds (prophylactic again) and after the third one I begged my onc to finish already. That's how horrible I felt. She convinced me to grit my teeth and finish the last round. (quoted studies etc.) She is a very caring MD and I trust her completely, so I followed her directives. If you have a good doctor who you trust and who has your best interest in mind, try it out, but speak up if it's unbearable. Wishing you good health and NO SEs!
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OMG Dassi52! You have been thru the wringer!! How annoying to get it again 17 years later. In the other breast?
A dear friend of mine recently got a recurrance after only 7 months, and this time, it's stage IV. She was so beat up by the tx the first time, that she was considering refusing tx. I supported her decision either way.....you know, her body, her life. But, our mutual onc would not hear of it so she's back on the chemo/transfusion train.
Blessings20 I appreciate the support- you've wrestled with this yourself. Sorry about your Mom. I'm a Movement Disorders Nurse, so I know intimately what you went thru with that!
It sounds like most people cope with the aches by getting up and moving, but I'm kinda stuck on that score. I was disabled 2 years ago by a nerve injury during knee surgery. I have osteopenia, and I'm high risk for falls, so if the AI further impacts bone density, I'll probably have to go on a bisphosphonate which carries it's OWN set of risks and side effects. A new study just came out detailing the long term problems of these drugs...including CANCER. I don't know how to post links here, but google it.
So, that's the thing. As an RN, who's worked on clinical trials, I know that outward side effects are nothing compared to what's happening to the body, and the brain, on a cellular level. It's like seeing a few ants in the kitchen....you know that there are hundreds more that you don't see. And these issues don't come out, at least to outsiders, for decades.
That's my rant for this fine morning. Still on the fence, but I'll probably have to take the poison.
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Question..... If excess body fat creates estrogen which feeds ER+ cancers, and the AI's block all estrogen production by your body...does it also keep your body fat from feeding the cancer? Don't know if that's been asked/answered before, but I am curious as loosing weight on this AI is really hard. Not impossible, just really hard. Thanks
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Don't think of it as poison! We are so incrediblely lucky that there is something we can do on a long term basis to reduce our risk of recurrence. I had two good friends die this summer of cancers for which, after chemo, there was nothing more that could be done...either you were OK, or you weren't....they unfortunately weren't. They would have given anything if there had been more they could have done!!
I did 5 years and did not have any horrible SEs. Because I really got serious about taking care of myself, I'd say I'm more healthy now than going in. Be careful about what you read on the forums, as someone else pointed out, most people who have been fine are not on here posting about it, they are just off living their lives.
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Weight is an issue with the effectiveness of AIs. This is why doctors are concerned about women with ER+ bc who are overweight. My MO was emphatic that I didn't gain weight. We get a one-size-fits-all dose. I've never understood why this has to be so with so many medications. It's not done with chemo. Dosage is adjusted based on actual size.
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Roxie, hmmm, doesn't make much sense.....makes all of us tall people, who naturally weigh more than short people even if both are proper weight, be at a disadvantage so therefore probably or most certainly more prone to mets..... I've never heard any hint of that......
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lago, I have definitely upped the exercising, which has helped quite a bit. Still stiff and doing the duck walk (HA!) in the morning or after sitting for a while, but definitely better! Haven't tried the monoxidil May have to look into that! I hate that I may have to go really short again, after losing all my hair to chemo and waiting for it to SLOWLY grow back, just to have it all breaking off now! Still, I try to keep in mind that I AM ALIVE!!!
Blessing to all the SURVIVORS on this page!
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I agree with Doxie. (well...of course I do. It's all about the doxies). I'm a tiny woman, and usually take 1/2 the "recommended" dose of everything that is averaged for larger men.
Ruth- I'm so sorry about the loss of your friends. That truly stinks.
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In that case, now I wish I was only 5'2" instead of 5'10".....I could weigh less naturally....
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MostlySew - There was a flurry of discussion on the Illinois Ladies topic about taller women more likely to get bc. I don't know where that research came from. I didn't read it. As for BMI and effectiveness of AIs, I've found this referenced in quite a bit.
A quick google search:
http://www.abstracts2view.com/sabcs10/viewp.php?nu=PD09-05
http://www.ncbi.nlm.nih.gov/pubmed/22802308
Not exactly what I was looking for, but gives some clues.
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Doxiemommy - Yes, gotta love the doxies. I couldn't believe no one had claimed "doxie" before me!
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Some drugs do work bases on size (like chemo is based on your surface skin area calculated by weight and height). Some drugs don't. I would ask your onc to explain this to you. I do believe things like aspirin are weight related. That's why children take a smaller dose.
Ruth I hate hearing you lost a couple of friends. I too lost one this fall and found out another has metastasized. I feel privileged that so far many of us are NED and what ever we are doing is working.
Rocknesmom it can take 3-6 months to see minoxidil work. I use the generic Walgreens (women's). Try to buy it on sale but the 3 month box is a better deal. I always check to see if it's on sale.
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Doxie--thank you so much for posting those links. I brought this up to my MO--about everyone taking the same dose regardless of size and she basically ignored me (I should mention she is my FORMER MO). These reports were startling. So, having a high BMI is nearly cancelling out the AI. **sigh**
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Does anyone ever have their estradiol and estrone levels checked after taking the AI's to see what they really are? They only checked estradiol before taking Arimidex and the test simply said my level was "less than 20" something and so I was post menopausal. I'd like to know how much less to know if it really made a difference.
I find it frustrating to take a one size fits all pill and not really know how its doing.
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Doxie, thanks so much for the links. Quite interesting. Reading these it finally makes sense to me that we all get the same dosage, but it's ability to work (or not work well) is related to our BMI. Not our weight, exactly, but our BMI formula. Of even more interest to me is that neither my MO nor my other doctors have said a thing to me about loosing weight....and my BMI has now gone over the top......so.....if those studies aren't enough to get me to loose weight, nothing is.. Oh, and thank the Illinois Ladies too!
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Lee7 I was checked for 5 months starting when I took Anastrozole. Since I went into chemopause my onc wanted to be sure I stayed there but felt I was so close to menopause based on my mom and sister that she was pretty sure I wouldn't come out of it.
I had the levels of a prepubescent male. It seems low I was wonder if the SE of the ALs also included growing a penis… but I never got that SE.
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Lee- I was checked because I started having symptoms, menstrual cycle returned and my hot flashes had stopped. I also felt like I was ovulating and after testing again I found out I was no longer post menopausal. Just had a total hysterectomy and feel great. I had to stop taking the AI before surgery and just started back. This time I have felt fine. No body aches/stiffness like before. Hope it last!
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lago...
don't scare me like that! What's left of my breasts are headed south, and I've got that thining hair on my head and darker hair where I don't want it going on....I already feel like a little ol man! Thank goodness for makeup. (and I have started using nioxin shampoos to see if that helps.)msbelle, its a good thing you got it checked out. I'm pretty sure I'm still post meno because I hadn't had any periods for almost 2 years before my dx. I'm glad you feel better on the AI this time!
Others have said they had less SE's after taking a break from it and then starting up again. I am so tempted to try but I'm scared to go off if even for a little while.
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Lee I use women's minoxidil
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lago, I was debating which to try first, nioxin or minoxdil. The treatment center I go to has its own hair salon for patients and staff and they had a 'starter' set of the nioxin shampoo, conditioner and a leave in spray so I bought it. The nioxin does have a nice minty smell and leaves my head feeling cool. (good for FL) What's minoxodil like ?
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Whatever the stats are...that sh$t made me crazy, and SICK!!! I abruptly stopped taking it after only 3 months!! I don't take anything!
Annemarie
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