For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Blessing, you will do well!!!
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Vacationbound, have you discussed using Fareston with your MO? It is the alternative to Tamox but for pre or post Menapausal. It does not have the CYP ingredient and much easier to tolerate. Now that you had a hysterectomy, you dont have to worry about he end cancer SE. I tried Tamox and had horrible SE but when I took Fareston I felt GREAT! Its just expensive (no generic form). The Fareston industry has patient assistance, they send you a book of $50 coupons to help you pay each month. Hope that helps you and to all that are reading.
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kjiberty - Thanks, Darlin, but YOU are the inspiration. All I had to do was stick to a diet. I didn't have to go through chemo or rads at the same time. Anastrozole will be my only BC treatment, so I want to give it the best shot I've got. Congrats on the last rads this Friday...will you celebrate?
Thanks, ruthbru! I've had a chance over the past 9 months to hear myself whine incessantly about what MIGHT be, and I sound like a real weenie.
So tomorrow - I'm going in to the MO's office with a positive attitude!0 -
Here is a way to look at it.....a person MIGHT or MIGHT NOT have any given SE with anti-hormonals, but we know FOR SURE that we have had cancer, and, therefore, FOR SURE run the risk of recurrence. The risk reduction anti-hormonals give us is huge (40% for me), and adding arimidex to your exercise and weight loss (both of which are really important) will give you wonderful odds of never having to deal with this ever again.
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Ruthbru.. Your a wonderful person to have on this board, you sure do make people feel better about what their doing and choices may or may not have made. Your an inspiration and I am very glad your here!
Wishing you good health my friend!
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Well Ladies, here I go again... Talked about the SEs I've been having with the ONC's nurse - she relayed the message and ONC left a message back that said, "obviously this isn't the route to take with you. Give it 6 weeks and we will discuss options in the office." end quote... What options is he talking about?
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GMAFoley, sorry for all the SE with each med.. I have the same problem. The only one that worked for me was Fareston. Felt a little funny at first but then I felt GREAT, not one bit of pain. I went off of it only because of the fear of End Cancer SE. So, until I have a hysterectomy, I will be on Arimedex, god help me! Good luck
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Thanks Jo, I've been taking Xanax off and on over the past 1 1/2 years. I've had a lot of crazy stuff happen in that time frame, that I have absolutley no control over, mostly 2 horrible deaths of people I loved within 5 weeks of each other, is what started it. This arimidex is making me feel just plain crazy, almost the same as the aromasin did. I talked with a gal at yoga today who I knew had had BC. She's on Arimidex and is taking Trazadone to help her stay on it. She had very similar symptoms to what I am experiencing now. She has genetic cancer and has to be on something. GmaFoley, I'm sorry you are experiencing the bad SE's too. I can hardly stand myself today, I just want to crawl out of my skin. I got up and walked 3 miles before the sun came up and went to yoga thinking all that would help me feel better, but it hasn't. Hoping my Onc calls back with some sort of remedy to try because I am about to throw in the towel.0
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So - met with the MO this morning, convinced that in addition to making me start the Anastrozole (finally!) she was going to make me take one of the bisphonates. At least that's what she said last December. (I've had osteopenia for five years, which has been stable.)
But the morning, she examined me, answered all my questions, and all she did was tell me to start taking the Anastrozole. I asked about further testing, and she said bloodwork every 3 months, as well as an exam every 3 months. No SEs? I can go to 6 month intervals.
As for other meds, she said I could take fish oil, calcium, and Vitamin D, but NO multi-vitamins because recent studies have shown that anti-oxidants can actually cause growth in cancer cells.
DH and I got out the door, when I realized she hadn't mentioned anything about the bone-builders!!!! I wanted to yell "RUN!" in case she suddenly remembered and tried to stop me from leaving.
Then I got to thinking that perhaps the weight loss and exercise made it less crucial that I take them?
Who knows. I take my first Anastrozole tonight.
In any case, I love this doctor...she's the Chief of the Oncology Department...young, energetic, a walking encyclopedia of current developments, and actively involved in research. Plus, she's funny.
She said that she has several patients who keep accusing her of not giving them the "real" drug, because they have no side effects! They think it's just Kaiser's way of using a cheaper, "fake" AI, and because they have no symptoms, it must not be working.
I told her how much I had learned being here on BCO (this is the only Internet site she lets me visit
) and she said to PLEASE promise her that if I had a good experience on Anastrozole - and she was sure I would, I would come here and write about it. She said that more women needed to encourage others that not everyone experiences all the bad stuff.I asked the best time to take it, and she said "Whenever you think you'll remember it." She said that if it was Tamoxifen, most women take it at night in case of possible nausea, but no one has reported that with Anastrozole.
She said to keep a log of any symptoms or concerns I might have, and to email her right away if I had questions.
I'm feeling MUCH better about this whole experience.
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Thank you very much for the compliment B123!
Well, today I hit a milestone.... I took the last pill of my 5 years of Arimidex. So I guess that makes me a retired member of the A Team. I will still come around and do some cheerleading; because I really do think it is so important, and I want us all to be around for a long, long time!
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Blessings, your onc sounds awesome! It's good to get a good one!
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Forgot to mention some interesting stats: after my BMX, my risk of recurrence was 1% - 2%.
Diet and exercise brought that down another 23%, so now it's 0.77%.
The Anastrozole will further reduce my risk by 50%, so now I have a possible risk of recurrence of 0.385%.
The MO just smiled and said she wanted to get as close to ZERO as possible.
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Blessings, I've been on Arimidex for almost 2 months now. The only thing I noticed was the first 2 weeks or so, I was dizzy and tired. It cleared up, and I notice nothing out of the ordinary yet. Hopefully, I won't. My MO said most of her patients have no SE's. I hope I'm one. :-) I do take Salmon Oil, Calcium, and I do take Centrum Silver, but I may ask her about that. Good luck with the AI!
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Yikes, I never heard that about multi-vitamins, I will have to check that out too, as I always have taken them.
Blessings, what I did to remember to take it was, I bought one of those 7 day pill dispensers and put it right on top of my underwear drawer. So every morning, there it would be. And on some of those crazy mornings that I couldn't remember if I took it or not, I could just look at the dispenser and see if the pill for 'Wednesday' was still in there or not.
Zero sounds fantastic!
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How do you know your percentages for each thing you take or do? I could never figure that out??
I want to let all know, I did break down and try the Claritin (store brand) antihistimine as you said and took half the pill. I feel like a different person. I woke up this morning with no back pain and barely pain in my feet and instead of feeling like I was 90, I felt young again! I canceled my hysterectomy for now because I can now stay on the Arimidex and not suffer. Just have to watch for bone loss, I already have osteopenia!!!
I dont know why it works, but thank god for all of you. Despite what we are all going through.. its amazing to see how we, as strangers, can help each other so much on this site. Your all amazing and I only hope I can help you all the same way.
Blessings to all of you.. B
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Ruthbru, congratulations!! So happy for you and thank you for being so positive and a cheerleader on here. I hope you dont go away now, but I understand if you do.. you deserve to move on and not look back!! THANK YOU!
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Ruthbru - CONGRATS!!! I'm very happy you made it through!
My Onc Nutritionist said the new guidelines state that "Overuse" of supplements can cause the cancers to grow - She told me multis are ok unless they have something over 100% of the daily requirement - an example is the supplement my eye doctor wanted me to take for my dry eye where one of the ingredients was 200% over daily requirement - I got a definite NO from her and my RO.
I'm up to 12% without Arimidex... I really feed sad right now..
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Gma, I can't remember, but have you tried the other anti-hormonals? Fermara etc.
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Yes Ruthbru, this was going to be my second time trying. First time was 9 months ago and had reactions with all three of them. I think the problem is more the symptoms of "lack of estrogen" and my concern was if that is the end result, how do I survive? My Onc saw me and says - you can't survive 5 years like this and with all my other drug sensitivities, he doesn't want to add drug upon drug... Basically, I have 6 weeks to clear my system then whatever the "next step" is... I have no clue - I only have my post menonpausal ovaries in me, no uterus.. I am just really mad that my friends can take this with no reactions and here I am with every reaction in the book....What's up with that! NOT FAIR.... ok got that off my chest - My DH always says it is what it is - then he told me yesterday hunny if the cure is worse than the cause - why are you doing this???
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what about tamoxifin?
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He mentioned it 9 months ago then talked arimidex retry instead - I think though - it still depletes the estrogen and my body doesn't seem to like that at all - I wish there was a way that we could deplete the estrogen but not completely....
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Thanks Jo, I am still waiting to hear from my Onc's office. They have never not called back within 2 days and I have called twice. I'm stopping until I hear from them. Xanax did not help me yesterday, I just felt plain crazy all day. That is living hell in my book. Didn't take any Arimidex yesterday and I could feel it lessen as evening came on and was able to sleep by myself. This morning I feel like me again and look like me again, more with each passing hour. Here's a thought my husband and I talked about. That we all get the same dosage - a one size fits all. I don't have much body fat left on me. Since the BC, I have cleaned up my diet like crazy to be healthy and ended up losing weight - I was not heavy to begin with. Since the body makes estrogen from fat stores and I don't have much, could that have something to do with why some of us don't tolerate this stuff well? I have no clue or any basis in fact for this idea, just wondering if anybody else has the same situation and can sound off on it?0
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Thank you Jo, Im so relieved too! You mention your stomach as well?? Does Claritin help with that too? I took half the tab yesterday and my stomach is bothering me today??
GMA, I have also had a hard time with meds and Fareston was the only one that I did really well on. Its a bit expensive but if it works!!? I hope that helps you. Good luck and stay strong.
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After a lumpectomy with followup radiation (no chemo) and a 1 cm IDC tumor with no lymph node involvement, it was advised at initial oncology consult in 2010 that I did not need chemotherapy, but would benefit by taking an AI. I was elated not to have to take chemotherapy and looked forward to taking the AI pill each day.
I had initial severe side effects with Femara (severe depths of depression and bad aches/pains) and was switched to Arimidex. The "symptom" side effect profile for me on Arimidex is tolerable IF it is helps. Overall, I'd say I feel like I'm 80 years old with depression (as a side effect from the AIs). I get aches and pains in the morning, and do notice my knees in partaicular seem to be weak or achy when I'm trying to get up from a half-kneeling position. I suffer from moderate-depression despite antidepressants, but I was depressed before (just not this much). Overall, however, if it's going to help, I'll take it. HOWEVER, I have a chronic illness (15 years of back-to-back chronic refractory migraines) in addition to the moderate-severe depression, and since I'm "only" 55 years old, it has really stifled my life. I'm rarely well enough or motivated enough to leave the home and I sit around all day. I get a good physical every year, but I "feel" like an old lady. What kind of life is that? I'm surprised my husband puts up with it.
My main concern is my next DEXA scan coming up next month. I'm afraid I'll have poor results on the scan. The pre-medication DEXA scan showed slight osteopenia in one joint. My knees are so achy/weak at times, however, that I'm afraid if I keep up with Arimidex I'll end up severe osteoporosis.
I'm also concerned about any effects the AIs may have on our *heart*. I've had a complete hysterectomy years ago, and with the addition of Arimidex, I'm also afraid I'll be at much higher risk for heart disease. My good cholesterol is great, but my overall cholesterol is 220. I get very little exercise because I suffer from a chronic illness together with the depression.
I don't want to take the AI if it's not *really* helping me. Both my famiy physician and oncologist nurse practitioner have always said it *does* help. However, on the "stat sheet" I received 2 years ago from my oncologist, it stated that adding in the AI only added (??) 2 more additional women out of 100 without recurrence after 10 years as compared to radiation only.
In other words, am I taking the AI for nothing and putting myself at greater risk for serious problems? I'll plan on asking again in much more pointed detail at my next visit (or before with a phone call), but I'd like the opinions of some of my fellow sisters here. Thank you!
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Gma, tamoxifin works in a completely different way, so I would think it would be worth a try anyway. Frustrating!
JO, maybe we will have to start a 'Graduated' thread. I've always felt like myself..... maybe I will start feeling like Angelina Jole or Nicole Kidman
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Had my last chemo treatment this morning. I am pleased to say I'm PFC! YAHOO. Dr. scheduled my for a bone density scan next Weds as had last one done in May 2010 and he wanted baseline info. prior to prescribing hormonal therapy. As I am post menopausal, he indicated he wanted to try me on Arimidex first. He stated it had the best trial record for less cancer re-occurrence and reduced risk of spread to other areas of body. I told him of my concerns with SE, specifically the bone thinning and bone, joint pain. So he scheduled the bone density scan and I indicated I had read on this wonderful site that taking Claritan, the 24 hr allergy pill, would help alleviate joint pain. He agreed. So if bone scan comes back good, will probably start Arimidex first of October.
Question for the group-- as a post menopausal women who experienced severe hot flashes at that time (10 years ago), will I have to face that again? I'm 5'9" tall, weight 160#, so I feel I don't carry a lot of extra fat that could produce estrogen and having gone through menopause over a decade ago, wouldn't I not have many SE from an anti-estrogen pill? Wondering how this all works.
Also wondering when is best time to take medication, morning or evening. I've read of some having trouble sleeping or staying asleep. Is the morning better? And, Blessings20 how do you determine your percentages?
Concerned about the multi-vitamin. Had not seen that info. before. Will ask Dr. He recommended today that I take 2000 mg D3 daily in addition to the 1200 mg calcium which has 800 IU of vitamin D with it that I currently take daily. I also take 1000 mg fish oil, and a couple of fiber tabs daily for regularity. All together with a multi. Quite a supplement regiment.
Appreciate everyone's responses. Thanks!
Congrats to Ruth! Enjoyed reading your posts and learning your how your journey has gone. Best to you!
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Sherry, congratulations on being done with chemo. The very creepiest part of things for me anyway! Everybody is different. Take it when you want to, and if that keeps you up (or puts you to sleep), try a different time.
I decided I am not going to worry about a multiple vitamin, I think it is when you take mega doses that you can get in trouble. Definitely take the extra calcium with the vitamin D and also try to get a lot of healthy vitamins through fruit and veggies and calcium through dairy products and (my favorite pitch) PRUNES!
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Im just wondering... I see that people are able to take their Oncotype score and figure out percentages of reduction with each thing they do or take? How do you do that? I am a 13, I did Rads, and take Arimidex, what are my % and odds?
Also, I am on the Arimidex 2 weeks now, started half tab Claritin the other day. My stomach has been turning.. should I be concerned?? Im taking Pepto and Probiotics to calm things down but a little worried.. Is this a norm SE?
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What ever the % they gave you with your oncotype score, that % is what chance you have in getting it - without times that by 2, for example my oncotype was 8 but my % was 6% - that means that with taking an AI - you take 100 women just like me and 6 of them will have a recurrance of cancer... without an AI 12 women have a chance of having a recurrance.. Hope that makes sense..
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I just looked and it said 9% so How do I know what percentage each thing I have down counts toward that 9?
Sorry for such a clouded question, Im sure it is an easy answer... Does that mean 9% of 100 will get reaccurance even on A1? YIKES?!! How does Rads fit in?
Thank you GMA!!
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