For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Can't say I'm overly excited at the potential of being on AI for 10 years. Really? OMG Tamoxifen is out of the question for me due to blood clot experience and family history as well for it.
Nothing like the thought that we can't get away from BC for 10 years or more. That is just so incredibly depressing!
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Sun Pharma is the company from India that makes Anastrozole. I'm taking it because I didn't know about TEVA before I started. So far so good for me - I have the feeling like I am 100 getting out of the chair - but not much else. Not sure if I should switch to Teva or not when my 90 days are up. I'll ask my NP what she thinks. Some of the Sun Pharma stuff is made in the US I've read. It's scarey to think about this stuff.
I noticed some of the mental stuff, plus residual from chemo brain, plus I just started on a statin drug for cholesterol. It was scaring me, because one day I suddenly got lost for a moment in the middle of a familiar neighborhood. So I joined a brain training website called www.lumosity.com I can't say enough good about this brain training. I've improved so much in 1 month - memory, attention, flexibility, speed. You do 4 or 5 short tests a day. I can't believe the difference in my everyday world. You can do it free for a few weeks. Then I paid $50.00 for a year membership. I look forward to it every day because I see such an improvement.
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I wanted to make a comment here about pain: those of you who have pain on the AIs and who have decided to continue on taking them need to learn a new word: PACING!
I suffered terribly from fibromyalgia for more than ten years. Sometimes the pain was so bad it woke me up at night. My sleep was terrible, and I took 40 mg of Elavil just to reach the "deep sleep" that restores the body. When I woke up, I was nearly crippled with pain, hunched over, walking gingerly on feet that hurt like every bone was broken.
I had a standing order for Vicodin, and I took it regularly.
Any kind of exertion would put me back in bed with excruciating joint and muscle pain.
Then I got into a ten-week pain management program at Kaiser. Even though my background is in medical counseling (I've dissected human brains, among other things) I never knew how complex the pain mechanism in the body is, and how much control we have over our pain signals.
However, one principle that was very important to me was Pacing. In other words, if - by some miracle - I did have the energy to vacuum the house one day, that needed to be it. I couldn't keep adding on chores (cleaning out closets, scrubbing toilets, weeding the garden, etc.) just because for one day I had less pain and more energy.
That was a sure-fire way to guarantee I'd spend the next few days in bed, suffering.
I needed to prioritize my physical demands, and perform those tasks in small increments. Maybe I'd vacuum a room instead of the whole house. Maybe I'd do one small load of laundry, instead of five big loads. I needed to give my body time to recover from any exertion.
Life was pretty limited back then. I lived in constant pain. Our instructor (a psychologist trained in pain management) told us that we would never get rid of pain completely. However, we would learn ways to live with it, and ways to distract our brains so that we were still able to function.
He said that taking narcotic pain meds to take away all our pain was an abuse of the medication, and totally unrealistic. (Remember, he was talking about chronic pain, not the acute pain after, say, surgery.) However, to take narcotic pain meds just so that we could get up in the morning and go about our activities of daily living WAS appropriate.
He also said that when we felt the least like moving, that's exactly when we needed to move. Not to run a marathon, but to just keep the muscles and joints active. Blood flow and oxygen to the muscles has a direct link to how much pain is perceived.
Anyway...more than I wanted to get into here, but that program really helped me.
What helped the most, though, was going on that Optifast diet for four months. After about 3 weeks, I noticed my fibro pain started to diminish. At the four-month mark, my pain level was probably a 3-4, down from a 10+. Turns out, the Optifast diet was gluten-free. That was an AHA moment for me!
I'm almost three months into Anastrozole, and I'm using the principles I learned in my pain management class to help me deal with SEs.
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That is really an eye-opener. Not just the fact that you realized how gluten as well as the extra weight you carried made things worse, but most importantly that we women often demand things from ourselves that are unrealistic and way too exhausting. I find for myself that - not because of the SE of Arimidex but because of LE - as soon as I did a little more physical work than I should have, I felt it up to 24 hours later and even more. It is tough to realize that we can no longer do what we used to, but recognizing our limitations is very important.
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amen
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I don't care what the studies say there is no way in hell I will stay on Anastrozole or any AI for lifetime. I'm already osteopenic and looks like I might be a candidate for the bone building drugs in 2 years… when my spine is considered osteoporosis. Not so sure I'm a candidate for 10 years with my bones. I'm only 51 with no other medical problems. (I don't consider IBS a real issue).
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Schatzi, I did try Claritin to no avail. I think you and I posted on another thread this very same thing but it was a few months ago. I was so excited when I read about the Claritin so I tried it. Every day for some time and it made no difference.
Blessings you make perfect sense. I always overdo it and I am aware of it. I don't like sitting idle and I love to just tackle new projects around the house, walk my dogs and play with them, and lots of cooking and baking. Hardly a lot of exercise, just like to keep moving. I do take my meds mornings only usually. Sometimes the pain will wake me up at 3 or 4 AM and if it is bad I take one then. I have a limited amount per month and have to make them last. They do make me so much more mobile in the mornings though. Some mornings it is so bad I can barely hold my coffee mug. Opening the childproof caps one the meds is hard so I leave the lids unscrewed or have my DH open them for me. I do have a medicine pill box that I fill weekly so I don't have to open much.
I really need to work on my diet and I know it. I am not sure about gluten free or making any big changes but the holidays I have been terrible and just need to eat healthier. I know this.
Lago I have not heard anyone mention taking an AI for life. If so, count me out as well. Not happening. My MO has never mentioned it. I do not want to depend on pain meds every morning, I would much prefer to wake up with less pain than I have now. I realize pain free is unlikely, but in my case this new level of pain I have can go. I see my MO Thursday and sure hope he has some good advice for me.
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justmejanis this is from Blessings' last post:
"My doc says the big study about AIs after menopause or Tamox vs tamox alone is ongoing. It shows it's good for 5 years. But it's close to being at the point of reading results for 10 years and it's lookinig like it will be positive for decreased recurrence and thus become a recommendation to stay on for 10. He believes as the study progresses, the recommendation will become longer. Eventually being the 'lifetime treatment' for postmenopausal women. ??? "
So not recommended or even in trials but I'm not doing it.
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The biggest chance of recurrence is in the first 5 years; I think if you can tough it out that long, you will have gotten the 'biggest bang for your buck'.
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Someone asked about why Claritin works for bone pain. The thought is that the antihistamine (loratidine) in Claritin helps with the edema that is generated in the joints by the expansion of the bone marrow. This is what is being quantified in this study:
http://clinicaltrials.gov/show/NCT01311336
The mechanism may be a little different in regards to Arimidex joint/bone pain because there is no stimulation of white blood cell production. I originally started on Femara but had too much discomfort from bone pain and developed a trigger thumb on my dominant hand. I switched to Arimidex and saw improvement, then added Claritin (which I took with success during chemo for Neulasta pain) and have improved somewhat. Still experiencing stiffness upon waking and if I sit too long, but not nearly as bad as when on Femara.
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I'm now on Aromasin for a week ( after 3 mos of Arimedex) feeling less stiff. Cautious though because my first 8 weeks on Arimedex were fine.
And no on the more than 5 yr thing.0 -
Blessings, you are so right. I have athritis so bad, I am always in pain. A 3/4 pain day is a good one for me. But I have learned the hard way, just like you did. Do what you can, don't over due. That is so HARD to do! We always want to get do much done on good days cause we know we have bad days, but overdoing it cause more days where we can't do as much. But it takes time and many failures to finally figure it out. Well, at least for me, maybe I'm just slow! LOL. Much love to all.
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lago thanks for the clarification. Another thing shot is my short term memory. It has been bad for probably 6 months or more but another thing that is noticeably worse lately. So annoying.
I have heard some people switch from one AI to another and basically with not a lot of improvement one way or another. I know my MO did not want me on Tamifoxen, he said different SE's but worse. I am hoping for now I can take a break and see if I improve much. If so then not sure what I will do. Beyond five years, absolutely not. I agree with Ruth that the most benefit is likely to occur in the first five years anyway.
Goodnight all and thanks for your thoughts.
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Just a small clarification: it was snapple7 who quoted her doc on the AI studies...not me.
SpecialK - thanks for the link to the study...even though it does not involve any of the AIs, I AM very interested in the whole issue of histamine responses and inflammation in the body.
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what is hot yoga?
i still have taxotears sometimes and it bothers me!I'm more than 4 months PFC!
reading to catch up- only on page 29
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justmejanis, some people don't see a big difference switching between Al, but some REALLY do! I sure think it would be worth a try for you.
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Lumpyme if you are still have a big problem with taxotears this far out I would see an ophthalmologist. My eyes are dryer than before so I will get tearing but nothing like I had on chemo or the 5 weeks after. You tear ducts might need a stint.
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janis...sorry Claritin didn't work for you but it was worth a try.
Lago...I'm with you....4 years and 2 months to go and that's it!!! I also have osteopenia and after 4 more years I am sure it will be osteoporosis. Can you imagine after 10 years? OMG!
My pharmacist tells me my insurance will now only cover the generic Arimidex so I asked the difference and it is $341...she says way too expensive. If it is for the 90 days, I think I will pay the difference. She said to try a month of the generic, so I will but I am doing so well on Arimidex (other than hair thinning) I must admit I am less than pleased. DH says stay on the original..we will see.
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I went to generic when it came out and noticed no difference....other than the fact that I had more money to spend on more fun things than drugs. I had been very concerned about switching too, but when I talked to my pharmacist, he said that as it is a 'serious drug', the formula has to be exactly the same in the generic as in the original. It could have some different fillers, but the ingredients that make it work for us can not be altered at all. I think the makers of Arimidex should add on to their slogan, "We're in your corner.....and our hands are in your pocket."
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This is entirely true. My daughter used to work for AstraZeneca and she gave me the old speech about what they spend on R & D...yada yada..
Do you know where the generic is made? I asked the Pharmacist and she didn't know. I know the fillers are different and that is what concerns me but I will try it anyway.
P.S. am still eating my prunes
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schatzi14 I've been on Anastrozole from the start. I get it at Costco because it's actually cheaper than going through my insurance. It was $51.65 for a 3 month supply. On my insurance they also will only let me get a month at a time. I have to order it because I get the TEVA brand but that only takes about a day.
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lago...because I am over 65, my meds are covered by the health plan (I am in Canada) but as soon as generics come out, that's all they pay for. So far my DH's private insurance would pay the difference but he is retiring the end of the year so if I want Arimidex, I would have to pay the difference. it's not that bad (altho the pharmacist thinks it's terrible)...I will wait and see if there is any diff SE-wise.
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I was just adding to my post while you were posting, schatzi. I think several different companies make the generic. My color switched while I was on it, and my pharmacist was quick to tell me that it was just because it was from a different company. I didn't notice any difference then either.
I will let the prune industry know about you when I write and ask for a kick back from all the new customers that I have recruited!
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ruth...LOL
I would love to have a DEXA after 4 months of eating prunes and see if it really reverses bone loss. That is what the study claims. Wouldn't that be great?
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I did yearly DEXAs on Arimidex. I dropped some every year but stayed in the 'normal' range (daily prunes, calcium and lots & lots of weight bearing exercise). GP wants me to wait until I'm off it for a year & then do another DEXA. He says that if I continue my regimen as faithfully off as I did on, he will bet money that we will see the numbers go back up.
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Unless there is a reason, we can only get a DEXA every 2 to 3 years. Usually it is recommended every 5 years except for someone with BC etc.
I just started the calcium and D3 regimen..all calcium gives me heartburn but I decided it was better to suffer hb than bone loss. As for exercise...shoot me!!!
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If your oncologist writes you up as 'high risk' you can get DEXAs more often. Try calcium chews with vitamin D (I like them because they are like eating a piece of candy...and I like candy
). Schatzi, start walking!!!!!!0 -
ruth....I LOVE to walk BUT I have 3 herniated discs in my cervical spine and even a slow walk will in 4 hours cause total pain...I try the treadmill and everything else I can think of. I do stairs (up and down 30 steps) at least 6 times a day and that seems OK. It's the hard concrete that is the problem even tho' I wear good shoes. It's a case of damned if I do, damned if I don't.
This has gotten progressively worse as arthritis set in. You are sooo lucky you are able to walk...I miss it. I am even thinking of trying to wear a neck collar when I walk even though that seems extreme...I will try anything.
I will go to the chews when these are gone.
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I do the power walking, strength building exercises, vitamin D, calcium and I'm still losing. I do get scans every year but I am osteopenic with a spine currently at -2.3, hip & neck seem to be maintaining and not too bad at all. Prunes upset my stomach
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lago...how long have you been taking Arimidex? I am -1.9 but haven't seen the full report yet. I wish in hindsight I had paid more attention to my bones in previous years.
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