For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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sherry I too was osteopenic when I started. Diagnosed with osteoporosis last fall. I started with Fosamax (pill) but it gave me acid reflux. Usually the next option would be once a year infusion of reclast but I have LE in one arm and the other is at risk so I won't let them do an IV in my arms. They won't do it in my foot. So I am going to do Prolia (2x a year shot) instead but it was a big fight with my insurance.
I wish I could handle the pills. They are very inexpensive. The plan was to be on it for 5 years.
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sherry, I am on Pamidronate (bisphosphonate) given by infusion, monthly. With the first one, my bones ached quite badly, which they don't tell you the SE's because you might not get them. As far as I'm concerned you should know what could happen. I woke up at 4am feeling like a truck had run me over. Tylenol didn't touch the pain, they gave me T3's the next time which was more than I needed. Now that my body is used to it, I feel a bit flu-ish for a day or so, not too bad.
I am getting Pamidronate as it's the only one covered by BC medical at the moment & it's ordered by my 2 oncologists & administered at the local hospital. It's only supposed to take 1 hour, but by the time they get the line in etc... it's taking about 2 hours. Last time I had a reaction to it, my vein was painfully tingly, they are going to slow it down & run saline along with it. Should help. Good luck, Dee
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Sherry, I get a Zometa infusion once a month, I have a port so I don't have to deal with the hassle of veins since I do have lymphedema in one arm and bad veins in the other. I haven't had any se's to talk about. I've taking it for 10 months together with Arimidex and my last scan shows regression. It was decided by my onc. from the get go and as far as I'm concern I'll stay on it for as long as they'll let me.
Aurora
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I started on Arimidex in July and started Fosamax in August. Have been holding steady with my osteopenia in the last three years. MO indicates no repeat DEXA fora year. Started on Fosamax as that is what the MO felt the insurance would most likely cover, in other words, would need to have trouble we side effects or worsening of bones before they would approve on of the the other ones.
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I did several years of Fosamax several years before all the dang BC crap. I was osteopenia when I started the F pill, when I was tested at the start of the dang pill.....I had improved and was fine (stuff works~~)
I was tested again after 5 years on the AL with no F pill but lots of weight bearing exercises, all was still fine! no sign of osteopenia
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sherry My Rheumatologistwarned me of the SE. She said some don't get them and sometimes it's hard for her to convince patients to try one more time. The first is usually the worst.
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Hi ladies, been away for awhile, my hubby took me on a much appreciated get away, on a short cruise with family and good friends, had a great time. I had been doing well, since starting Al about six weeks ago, last Wednesday, I had a bad bout with the big D and have been feeling lousy ever since, at first I though it was just a bug, as they can happen on cruise ships, but it has been almost a week. I am the only one who got sick and after a week, I still feel awful, stomach pain, back pain, headache and just generally achy. Has anyone else experienced this? Hate to go on like this, but, being a 3 time survivor, scared to stop taking it. I chose to stop it 3 years ago, but feel I have no choice this time. Can't sleep, and feeling so frustrated. I see many dealing with side effects, hope we can all get through this, thanks for listening. Stephanie
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3rdtimenow if it's that bad discuss with your MO about one of the other AIs. I know I'm doing much much better on Exemestane (generic Aromasin) than on Anastrozole. No sleep issues, not back/neck/shoulder pain and no depression. Gone within days of stopping Anastrozole. Have not returned. Starteed Exemestane in June.
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by Big D are you meaning depression?
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No Diarrhea LOL
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Diarrhea. next question
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Lago, that's what I first thought then decided I might be wrong. No "next question" right now. Thanks!
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"Next question" was directed at BosumBlues
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Thanks for responses to my questions. Looks like I will be discussing and trying Fosamax; as I perceive it to be the easiest taking tablet each morning. Optimistic I will not have SE, but like with anastrozole there are other options providing similar benefit. We do what we must do. Onward........
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Stephanie, I had an appointment with MO last week. Told him about neck pain, headaches, stiff knees, and hot flashes. He nodded his head at each one and then asked me if they were bothersome or horrible. I said quite bothersome and he told me to call when they were horrible and hope that some would disappear with time. I have had "D" since I had my colon removed when I was 38. I was not able to work after that. Too unreliable for a classroom (can you imagine leaving a classroom of 12 year olds unsupervised 25 times a day!!!) or even an office. People don't have THAT much sympathy. BS let me use a Depend in the OR because I was so nervous about it. Things should resolve for those of you who are suffering from"D" with bentyl or another script. Ask if you need one. Good luck!!0 -
No offense, at all Bosumblues, with all of these SE's easy to misinterpret. Thank you all for the feedback, have a call in to MO and I'm expecting the wait and see answer, like you got Ohiofan. Trying to keep busy and not think about feeling crappy all day, kind of like the flu. Thank you too, Lago I will keep that in mind too. You ladies are the best. Stephanie
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Shit, where was your cruise too---maybe you got some tropical parasite... Don't blame the Arimidex till you get tested.....and that's a real fun test, let me tell you......
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Redheaded1, I've been on Arimidex since March (7 months). I was wondering how your doing on the drug? I'm just now having severe diarrhea
and dysentery
I've experienced weight gain, joint pain and major hot flashes. I know everyone is different but I'd sure like to hear from a few women who could tell me their experience on this drug. Thanks 0 -
3rd time, several years ago, before BC, I was living on a tropical island, visited another island, and came down with horrible diarrhea. It lasted 3 weeks before I called the Cleveland Clinic inFL and flew from the Caribbean there. I was a colon cancer survivor and worried. I was at the Cleveland Clinic one week, and they did every test imaginable. In the end, they found nothing, altho they suspected a bacteria from either a hot tub or raw conch salad, no longer detectible but my system still suffering the effects. Also once, here in the US, had a food-borne bacteria from chicken. Again, horrible diarrhea. Was called by the health dept and told to stay away from children. The restaurant was investigated. Hope yours is something as simple ( but oh how miserable) as a bacteria...
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Lexie- I am doing good. I started my generic Arimidex on June 9th. Tfhe first month was unusual in that I had hot flashes and nausea, (never hurled, just felt like I might) . Also insomnia, which I already had, it worsened. It subsided to the point I have no nausea, and the hot flashes are nothing to be bothered about--( I had a surgical menopause in 2006-when they yank your ovaries out and you have that dramatic of a loss--that's a HOT FLASH). After two months on the one made in India (Sun) I switched my script to CVS for the one from ISRAEL (TEVA BRAND). Feel quite a bit better on this one. Still have the occasional hot flash.
I have had a problem with my ear feeling full (pressure) and have seen the ENT, Had an MRI, seen the TMJ doctor and discussed it with my MO. I don't think anyone has given me the proper diagnosis. It is the biggest frustration in my physical well being at the moment. Funny thing is, when I wear the plastic appliance that I use at night for my TMJ, during the day, it doesn't happen. See the TMJ doc again on the 9th of Oct. to let him know how that is working out. A lot of gals here have shared that they also noticed ear issues, but my MO and the studies all just say less than 1% reported tinnitus ( ringing in the ears)
My sleep issues continue---it helps if I take .5 of Xanax at bedtime on top of my 150MG of Trazadone, but I try to avoid the Xanax, as it is addictive.
I have had some slight changes in bowel habits, but I think they are more diet related--if I eat a fatty meal, the old gall bladder bitches....
I had been a couch potato prior to diagnosis and weighed 206 at 5ft 6 at DX. I am now at 185. I joined weight watchers in May and started walking 2 miles 5 days a week. I don't truly follow the WW plan or I am sure my loss would be better. But exercise and diet is the only way to counteract the weight gain that can happen with this drug. Anticipating a serious winter again this year in Central IL so will most likely be joining a gym as it will be to cold and blustery to continue walking at the lake every day.
Front page story on my newspaper this a.m. was about them wanting to open up medical relationships and make it transparent between physicians and drug companies and the doctors groups are all having a fit about whether it will be properly done. Wonder how many of our MO's are in bed with the AI manufacturer?
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BosumBlues, if you had an oncotype, it showed your risk both with and without tamoxofin. In my case, my risk was reduced by about 50%. For those of us who are post menopausal and on AI's, our risk is supposedly reduced even more. How much more, I'm not sure.
Redheaded, my ENT says something like 80% of us who are above a certain age suffer from tinnitis. I've alway had it on an occasional basis, but, for the past couple of months, although I might not be aware of it, when I "check," it's always there. I recently switched from arimidex to exemestane, so maybe that's why, maybe it's my Meniere's, or maybe it's just that I'm getting older.
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According to my MO for me if I only did surgery & chemo my recurrence rate would be 34% (in 10 years from diagnosis)
Doing surgery, chemo & 5 years of hormone therapy my recurrence rate is 14% (in 10 years from diagnosis)0 -
New BCorg member here
I've been on anastrozole for 1 week now and I feel like I've aged 20 years.
My hips lock, my mouth has the most hideous taste in it, I drink a coffee and Drip sweat for 10 mins..
I'm 47 and getting zolodex whilst waiting for an Oophorectomy after a recurrence in May this year (original diagnosis 2010)
Uuuurghh is all I can say
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I think its kind of like the lottery--you can't win if you don't play. I just found a great, smart, articulate, caring MO and trust his guidance. He lets me leave a voice mail and he returns phone calls himself, although if I ask the nurse, she will relay the response. He says exhaust the AI's before I go to the SERMS, so that's what I am doing. Finding out a tough old broad lives inside this fair skinned redhead.....
Did I want surgery, no but I had it. Did I want to do radiation, no , but it beat the thought of dying young or old ravaged with cancer in other parts of my body. That maybe I could have prevented....... Do I mind taking a pill, well, hey, who likes to put stuff in their bodies, but it all beats the alternative FOR ME. I'm single too, but I don't want to have to depend on others to take care of me. Not until its my only option......
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wambles, welcome to the club no one wants to join, arimidex and all other anti-hormonals come with se's (side effects) and I too get hot flashes and sweats but I'm taking a medicine called risperidone for bipolar disorder and it helps with the sweats there are other medicines not as strong as mine that can help if its too much to handle ask your doctor, my thinking is that as long the big C is staying at bay I'll deal with the se's but others find that they can't live like that and their doctors switch them to different anti-hormonal. Good luck and these forums are a great place to get information and share. I suggest you fill out your profile so that anyone with a similar dx (diagnosis) can share helpful information.
Aurora
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BosumBlues, my OncoType also did not come with a WITHOUT Tam score. My score was 13. And recurrence percentage was 9% with 5 years of Tam and no chemo. I guess I never considered not doing AI since I feel it will be worth the peace of mind.
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BosumBlues, I do feel very fortunate.
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BosumBlues, I think it is on there somewhere. Maybe your onc or his nurse can find it for you.
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BosumBlues this isn't just based on stage. It's based on age, health, type of treatments and probably other criteria. If you're younger than me that puts you at a higher risk. I was on AI from the start even though I was perimenopausal before chemo. I was also in excellent health… other than IBS managed with diet I had no health issues, not even overweight.
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lexie2002, I've been on Anastrozole for 4 months, and here are my SEs: hot flashes (some days they're mild and infrequent, other days they're miserable and frequent), hair thinning (but I've been seeing a dermatologist for that since 6 months before BC diagnosis), and recently I've had some mood swings and/or depression. Only 4 years and 8 months to go!
Edited to correct how long I've been on Anastrozole: it has been 4 months, not 3 like I typed earlier.
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