Arimidex
Comments
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Coo-ee Mellodylane, welcome to this forum, another Aussie here too. I have a few favourited threads that I read almost every day and I have this one because I have been on Arimidex for nearly 12 months now.
I do find that we have different brand names for vitamins etc., than the US brands but I would imagine they all come from the same places/manufacturers. I hunted for black cherry juice/fruit yesterday and couldn't find any. So today, I was in Bi-Lo and lo and behold they had Coles brand, black cherries in a can. I will be eating about half a can a day from now on until I find out whether my 'arthritis' is subsiding or not. Hope to see you here more often,
Sheila.
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Hi Jezza and Sheila I knew there must be some Aussies on here but I hadnt seen any recent posts as Im only a newby to this site even though I've been taking Arimedex over 2 1/2 years wish I had found it sooner. Its so good to hear other comments and yes there are other names for vitamins that I havnt heard before,I must check out the black cherry in Bi Lo! so Coo-ee back!!!!
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Isn't it great that we have this global forum to go to? Love you Aussie girls, I can hear your accent as I read your words. Also like to read Ainm from Ireland in my Irish brogue! I will pour on the southern accent, y'all. Is Sheila a nickname for a kangeroo? Seems I read that. Or not?
Pam
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Pam
Not quite right with the kangaroo it actually is slang for girl/woman. lol In a good way though.
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Could we have a translation of "Coo--ee"?
It's great fun communicating with ladies all over the globe. Love the difference in vocabulary.
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Very Aussie call out to someone to let them know you are there. or looking for them....
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Jo-5
Thanks for the information. Glad I'm not the only one who is so sensitive to any meds/vitamins
I try. I ordered the glucosamine made from corn and will try it. I intend on stopping if I have any se.. I am just tired of not feeling well. I go to senior arobics class twice a week and will try to walk more. I want my stomach back!!!
I must say this again, I tryly enjoy everyone on this thread. So funny and informative too!
Hugs
Desny
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Hi everyone -
It looks like I will be hopping on the Arimidex bandwagon pretty soon. I've heard that it is pretty costly. Can anyone give me an idea of the expense. I have some drug reimbursement through my medical plan but fortunately have never had to take advantage of it. Just trying to figure out what to expect.
Thanks
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Hi Windshift,
My insurance "discounted" cost for Arimidex (30 pills) is $339.00. I think it would be about 10% more if I did not have an insurance plan. Once I have met my deductible for the year I can submit my receipts for partial reimbursement. So yes, it is very expensive!
There is the possibility the drug will go off patent in July 2010 and if so, a generic will become available at some point after that.
Astra Zeneca, the manufacturer, has a support program for people without drug coverage. There is an income cap and you have to apply. Some doctors provide samples to their patients so you might ask.
I am taking it with tolerable side effects considering the potential benefit of the drug. For me, exercise is an important part of coping. Best wishes to you.
Pam
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I'm in Canada. It cost me $525 for 90 pills. My extended health care benefits will cover the entire cost.
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Here in Aust we only pay $30.00 but as we have reached the family threshold for the year (husband had heart attack so has pills also) I now only pay $5.00 till end of year then back to $30.00 In Jan.
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Hmmmmmmmm, may need to move, what's the weather like in Aust? Sorry, Helen, Canada's too cold for my bones; I'm allergic to ice and snow. LOL
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Windshift, my copay for Arimidex, which is on the list of "premium" approved drugs in my plan, is $35. For most of my prescriptions, I can get 34 pills for a month's charge, but Arimidex comes pre-packaged with 30 pills.
My cancer dr's NP told me that some of their patients don't take Arimidex because it's too expensive for them to afford it. I must admit there have been weak moments when I wished I couldn't afford it and would have an excuse!
Tomorrow will be three weeks on Arimidex for me. My main SEs so far are muscle and joint pain and hot flashes. I played 18 holes of golf on Wed. and again today. I usually walk between 2 and 3 mi. on the days I don't golf. As many have said, exercise seems to help.
Good luck to you!
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Patoo
I Live in Queensland and the saying is beautiful one day perfect the next!
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Hi mellodylane..or should I say cooeeeeeeeeee...lol
Got your PM..hope to see you on Aussie Forum soon...
Gotta agree...the weather in Qld. is beautiful. I'm down in Melbourne. Its beautiful here right now but that could change in 5 minutes!
jezza
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Hi,
I just want to say, I was an avid anti drug freak all my life, never took a pill not even an aspro,
suffered any pain that came along. But this is our lives we are talkin g about and this is all they have to try to prolong them. I had terrible qualms about taking Arimidex proberbly for the rest of my life, I agonized, but I took it and never felt better, no side affects, lots of energy, feel normal.
and it has shrunk my tumours. take it and bless it for it can prolong your life. love and hugs to all in need Zeeka
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Hi Jezza
Yes originally a Melbournian all my family down there so I know all about the weather,
Im off to do a relay for life today and the weather is glorious. lived here for nearly 30 years and it is mainly the weather that stops us going back but still love Victoria anyway.0 -
Patoo, I won't take it personally .... LOL .... I understand what you mean about the ice and snow. It does happen here for several months every year. ..... but there are many other benefits of living here ... and we like our friends no matter where they live in the world.
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Hi Roxy
I hear of Women taking Arimadex in the Morning, but I find at night I take mine and it sends me to sleep so quick, If I take it too early I can't watch my shows lol.
Maybe it is stress and too much thinking keeping you awake. I refuse to think before bed unless it is dreaming of winning 50million dollars, and that sends me of real quick,good luck and God Bless you Zeeka
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I am jumping in again after not being on this thread for awhile. I have not read all 30 pages but I just read an article on AL's that stated after a 5 year study on many women it was noted that the women who were at least 5 years post menopause before starting AL's had lesser SE. Women who were not had more SE's because the estrogen drop is so rapid. Makes sense to me, now that they have figured this out could they please fix it! I was just one year post menopause when I was diagnosed. I have had all the SE's but lucky for me they come and go. Most recently I have intermitent peeing episodes where I have to pee every 1/2 hour. I see it is a now a SE listed on our Arimidex. I am seeing an Onco for the first time next week so maybe he can answer these ?'s my BS cannot.
I am still thankful for this drug just wish it didn't hurt so much (:
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That makes perfect sense! I'm 59 and went through menopause at 50. I had read about terrible side effects but I haven't had any. One thing I did notice was that I pee more frequently. I did not know that was a potential SE but I must have it. At last there is a benefit to being an "oldie".
Roseann
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I share this only so that others who may be experiencing the same thing will know they are not alone. I understand we each have to make our own decisions regarding our treatment and I hope all understand and respect mine.
I was 42 when I was diagnosed, because of liver issues Tamoxifen was not a viable option for me, so I was surgically put into menopause. I have been on Arimidex for going on 4 months. Since starting I have gone down hill dramatically in my energy levels, and my issues with joint/muscle pain. This past week I reached my breaking point when I had to leave work and go home to take pain meds, and I had to skip 2 of my trips to the gym because I just couldn't do anything more than go home, medicate and lay down.
After careful consideration, and discussion with those closest to me, I have stopped taking the Arimidex. The flare up I am having now is as bad if not worse than the one I had after I finished Chemo nearly a year ago - and on top of it I have a rash over most of my torso. I don't intend to stay off my meds indefinately, but I do want to see if it does make a difference. At this point, I don't know what else to do. I have tried adding all of the supplements/creams/exercise/etc mentioned and none of it made a difference as far as improving or halting my deterioration. I am 44 now and entirely too young to be self medicating and going to bed at 7:30pm on a regular basis. I have an appointment with a neurologist in 2 weeks as I am having SEVERE nerve pain -first in one, now in both arms (although one more than the other) and most recently -numbness in my toes. None of this makes sense, no one has been able to figure out what is going on...I can only pray that going off my meds makes an improvement or the neurologist can figure out what is going on. For a brief time there - before I started the Arimidex, I seemed to be on the road to recovery with losing weight, improved energy, and relatively no pain. In the course of 3 months I have completely relapsed, and I am so over it.
I'll keep checking in and post any new developments or information I find.
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Navygirl
My heart goes out to you and the rest of the women who are experiencing these horrible side effect. I am in the same situation, but my Oncologist doesn't believe that the pain can be as terrible as I describe it to be. Due to a family history of breast cancer ( father & 2 sisters), I plan to remain on the medicine unless it causes another life threatening side effect. I respect your decision and I wish you the best. I have 4 more years to go.
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I have to keep reminding myself that I am taking a powerful med when things don't seem as right as before. It also brings me to taking care of myself and putting that front and center including what I eat and how I exercise. I feel now like I am peddling fast to keep up. I have a little over two and a half years to go. a big SIGH!
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I think the findings about woman starting menopause for a few years before starting the pill could be true as I went through chemo induced menopause 4 years before begining to take it and I have had very few issues. I do know that when I found out that my cancer had returned after 4 years I was literally devastated maybe more than the original diagnoses as I thought I would have to go through it all again Chemo radiation etc so when they told me I would have to take arimidex once a day for the rest of my life and it could give me terrible aches and pains I was just so glad that I felt like I had been given a second chance again not having to endure chemo was just such a relief that the thought of aches and pains seemed trivial. Fortunately for me they have been mild I do feel for anyone suffering, but i refused Tamoxifen originally and my cancer came back and I think if we can reduce that chance of recurrence it has to be worth taking.I wasnt given surgery the second time and the lumps are now just scar tissue.
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Navygirl, we do understand and respect any decision you make. This disease is different for each of us, even if only in small subtle ways. You need to do what you feel is right for you. My heart cries for your post as you are truly suffering. OmahaGirl's post sounds very plausible and would fit in with what you are experiencing. My prayer is that the neurologist will take all your complaints very seriously and get to the bottom of it. Have you already talked it over with your med onc? I know they almost routinely say it's not the Arimidex but perhaps yours would be one of the rare ones since you are having so many significant se's.
Vashti55 - but my Oncologist doesn't believe that the pain can be as terrible as I describe it to be... I have to say that I place no med doc on such a pedestal that I won't go for another opinion, and if necessary, switch, when someone does not take my complaints seriously. Not saying you should because that's just me but how dare he dismiss you that way. Even if nothing can be done, and we have to live with some or all se's, because recurrence is worse, he still should have empathy.
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Hi Jo-5
Thanks for posting your experiences with the doctors. Your story about HRT and mine are about the same number of years before I found out I had bc and treatment. I always felt young and full of energy on the HRT. I think they are the major cause of my bc since there is no history in my family. I live a state, NY, that is called the cancer alley. Everyone knows all kinds of cancers occur here but no one will do a study to find out the attributing factor.
I am glad that your doctors are finally being honest about the se now that "they" feel secure about talking to you, after the fact. They only admission I got from my doctor was about the joint pain.
She told me to take glucosamine and walk and that I would proably feel older then I am. I do already! I will be on Arimidex for 2 years in January and either am getting used to it or learning how to live with the se better. Some have said that the longer you are on it, that the se became less. I sure hope so.
I am glad you kept up and finished your 5 years. I just turned 60 and have over 3 years to go, grrrr. But I will do as I am told because I know what you say is true. It is easier to treat the se then another cancer! Hugs to you!
Desny
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Navygirl, I hope you'll stay in touch and let us know how you're getting along. You're right in deciding that you're much to young to lose all quality of life. One size does not fit all, even though that often seems the philosophy in the medical field.
Some of these Arimidex SEs are actually laughable when they're not funny. This morning as I lay in bed flexing joints and stretching muscles, I discovered that the joints in my TOES were sore and stiff! The biggest discovery I've made is that I feel better when I exercise than when I sit around and "rest." My weight has been steadily increasing during the three weeks since I started on Arimidex, so today I'm going back to counting WW points.
I'm exercising my hands and fingers daily with some rubber balls I bought online. They're designed for therapy to help with carpal tunnel symptoms. I'm also doing some simple hand exercises. Happy to say the symptoms (numbness, tingling, flashes of hot pain in the hands at night) are not bothering me now. Either the nerves damaged in BMX are healing or the exercises are working. It's worth a try for anyone having the same symptoms from taking Arimidex. You can find the exercises by googling carpel tunnel.
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Navygirl,
It sounds like you and I had very simular side effects from Arimidex. I also chose to be taken off of this drug. Unlike you, I CAN take tamoxifin and I have gone back on that. I have to say...life off of Arimidex and back on tamox. is like heaven! I no longer am tired all the time (no matter how much exercise and b-12 I took) and the pain is basically gone! I actually feel like my "old" self again!
For those that don't experience the really bad s/e of this drug...I am very happy for you..and continued success!!
I wish you all the best Navygirl. I know my quality of life...is 100% better than it was 4 months ago!
Lisa
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Jo, was your weight gain on Arimidex the result of different eating habits or were you on the same diet as before? I'm wondering if the Arimidex is causing me to retain fluid. Some mornings I can't slip on my wedding ring when I first get out of bed.
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