For Arimidex (Anastrozole) users, new, past, and ongoing

[Deleted User]

Claire~~Thanks for the advice. For me the balance thing is a little more involved. As I said, I'm an XXL gal. I had a knee replace almost 16 years ago. I needed them both replaced, but since the left one doesn't bend properly, I've been reluctant to have the right one done even though it's bone on bone. My knees don't bend or swivel like normal knees do.

Paula

claireinaz

Dear Claire, thanks for the inspiration as always. I planned on doing a back to back session of bikram yoga tonight and began to talk myself out of it. You've convinced me that the struggle to push ourselves is always worth it in the end. Sweating in bikram, tonight!!!

the other Claire in the SW

Teresa_G

I just checked out the Live Strong YMCA program online. Looks like a great thing, however there isn't a location in my State this is doing the program.

dobby

Timbuktu-

This is what the BS said after seeing the pathology report. There was no grade or anything like that.

proudtospin

you can always call your doc and ask questions before making your final choice

I would if you are not satisfied with the amount of info

kvg

My first post on this topic. My wife (stage one, DX test - low recurrence) was on Arimidex for 4 years, stopped in July a year early. I realize the decision to start on these AI's is difficult, and I hate to add to the stress, but I don't think the potential reward was worth the risk in my wife's case. She has had severe neck, upper back and shoulder pain and spasms ever since she started this treatment, along with muscle atrophy in the neck, back and shoulders. Even now after being off of it for over three months, the spasms and debilitation is present. I don't know if she will ever recover.



What really infuriates me is the high percentage of Onc MD's who deny there is any connection with the drug. My wife's actually suggested she might have fibromyalgia, which is always possible, but unlikely since the onset was directly related to the drug.



It's difficult to treat a side effect when the medical community won't even acknowledge its existence.

iamnancy

Loral - is that a trampoline?

Skittle

Could anyone who has taken anastrozole a while, and then switched to Arimidex, tell me how long--if at all-- it takes to notice any difference at all? I have high hopes for fewer se's, but wonder about your experiences... or if it's the same... no party required. :-) Thanks to all.

lago

Claire_in_Seattle I used to do crunches on the exercise ball instead of sit ups. But now I can do the sit ups. I actually use the exercise ball for a lot of my exercises since I don't have a bench to sit on.

[Deleted User]

Teresa did you call your local YMCA to check on it? My YMCA told me this is their first class. So it may not even show on the Internet yet. It wouldn't hurt to give them a call.

I had my first meeting today. There are 6 ladies in my class including me. All but one was dx with BC. We will get strength training exercises, and a full gym membership for 12 weeks and are asked to come back for the new class in the Spring. They also have a pool.

Paula

Timbuktu

kvg, my son is a psychiatrist. He was taught that fibromyalgia was a psychosomatic disease! After being on the AI's, I told him that I hurt all over and it occurs to me that it seems to be the way fibromyalgia is described. First he scoffed. Then, we talked about it awhile. Fibromyalgia occurs mostly in post-menopausal women, right? The onco told me that the AI's increase the sensitivity of the nerves. So maybe fibromyalgia is related to low estrogen? I've never had anything like this before.

I sure hope your wife recovers. I do wonder how or if there can be a return to normalcy. That said, if it keeps the cancer away, it's done it's job.?

What a choice!

Timbuktu

Is this balance problem common? I haven't seen it discussed much until now and its such a subtle change that I wasn't sure if it was real.

I like the idea of those poles. they look sooo much more sporty than a cane!

Claire, did your balance return? Skiiing and biking require balance!

spookiesmom

I was dx'd with fibro years before bc. Current research is leaning to a neurological cause, but there is much, much more to fibro. There are over 100 symptoms attributed to fibro. Pain in the neck and shoulders is common, typical.

claire_in_seattle

Timbuktu...I never lost my ability to ski and cycle which is why I didn't realize I had lost some of my balance. You also have to realize that mine was never great. I have a lazy eye and hence horrible binocular vision and almost no depth perception. I have learned to compensate, but was never able to do things like know where the softball was so I could actually HIT it. It affects me a bit on down hills cycling, but I don't think this is chemo-related.

That said, I was shocked to realize when I started running how much better my balance was as a result. I think from finding long-lost muscles which I needed to support the running. So much more like when I used to run around barefoot in my teens.

I had Lyme disease decades ago, and had trouble doing down hills hiking afterwards. Cycling fixed that. This was long before breast cancer. This was because my weakened knees wouldn't support the stress but cycling strengthened them. I need to mention that distances were ~10 miles which is a lot less than I did during chemo.

So the point is that we do heal. But I think we need exercise to get there. (Just did my weights routine upon returning from the opera to make sure I got that in.) - Claire

Timbuktu

I know what you mean Claire. I've never been a coordinated person. But when I used to work out, when I would trip, i could right myself quickly and not go down. Whether it was because of muscle memory or just having the strength to stop the fall, somehow I would not get hurt. It's been so long since I've really been in shape its hard to tell what is causing what.

loral

Lago..Thanks for the info.

IamNancy....yes it is, it's easy on the bones, doesn't hurt to jump, and great for the lymphatic system.

Teresa_G

Paula I didn't call them, I will do that. Thanks for the suggestion.

lbrewer

there is currently a trial underway studying testosterone and arimidex joint pain.

MarieK

I'm having random unexplained hip pain. Feels like a pinch rather than a take-my-breath away pain. Sometimes the right or left or both hips ache.

It seems like it started when I started taking the Anastrozole.

Side effect?

I mentioned it to my MO the other day and he said could be but unfortunately he can't scan me because of my recent radiation of that area.

I'm seeing him again in a month.

I thought I was doing ok on this drug (into my 2nd month now) and only having a bit of hot flashes and now this hip pain.

proudtospin

I had some hip pain a while back, never really sure what it was from but got lucky and found a trainer at my gym who gave me some nifty stretches that I now do every time I go to the gym...maybe give it a try?

MarieK

proudtospin - I'm curious about your nifty stretches. Can you describe them or send me a link to them (if online)?

5LuvBugs

Skittle I took anastrazole from April to August and had awful SE's: joint pain in joints everywhere "fingers, toes, shoulders, mostly my hip.  grumpy all the time, so much that my family begged me to stop taking that med .  Well I switched to the brand name Arimidex at the end of August and within a week or two I felt relief. I;m not saying I have no issues I still have joint pain but not nearly as much, I'm much happier now and can deal with stress better (but don't piss me off ) ...Occasional hot flashes but I do notice that my skin is getting dry, I guess that's because all that estrogen that keeps us young is being sucked right out of me!!!!  Someone on this board suggested that we switch to brand name because it's all the different fillers in the drug that affect us and who knows where they are made. my doctor agreed.  My anastrazole was distributed by Breckenridge but after searching I found they were made in India - Arimidex is manufactured in the US by AstraZeneca . You will need a script that says  "do not substitute"  or you will pay alot for that med. Marie, this may help you too.  Hope you both feel better soon

5LuvBugs

Claire - I give you sooooo much credit for all you do and have done throughout your treatment.  You are forcing me to exercise again.  I go 2 times a week to an exercise class and 1x week yoga but I need to get strong and get rid of all this flab which was bad enough but now since my treatments and medication everything appears to have moved and turned to tapioca!!!! I'm still afraid to get on a bike since my feet can't reach the ground..

proudtospin

Marie, let me see if I can describe my stretches but lots are really yoga moves. First one is sit with your right leg bent and rest your right calf on your left knee.....gently push down on the right knee. Depends how limber you are so if stiff, not to worry as practice will get better. I used to do that sitting at my desk, it is a yoga move.

Other one I do is lie on a massage table on my back, hang my left leg over the side of the table and using an exercise band, pull your leg back...this tough to explain really and to be sure you do not get in trouble....best to find a trainer to show you some and teach you the correct things. Lots of dif moves and I spend about 15 min every time I go to the gym...he sure prevents me getting in trouble

MarieK

Thanks Proudtospin for the explanation. I just tried the pushing down on the knee one and I am super stiff and sore on the right side. Admittedly, I have sat on my butt since July for fear of fracturing my femur but the ONC has given me the ok to start exercising.

I will do as you say and start with the stretching and then maybe move to the elipitical (I will have to dust it off first!).

MarieK

Thanks 5LuvBugs for the recommendation. I see my ONC again in a month for a progress report on the switch to Anastrozole and if the hip is not better I'm going to ask for the real Arimidex. I'm not sure how that will work since I've been getting my prescriptions (Tamoxifen and now Anastrozole) for free from the Cancer Clinic at the nearby hospital.

Rosebud8

I've just come off anastrazole/Arimidex after my 5-year stint so here's my take on it's side effects and on how I'm feeling after one month. By the way, I've posted elsewhere on the question of whether or not further years of anastrazole should be prescribed (10 years of Tamoxifen has now been recommended as being better than 5 years, in a recent study).

I read somewhere that SEs might match one's experience during menopause. Item 3 below is the absolute match.

1) peripheral neuropathy in my feet every morning for, say, 30 mins so I had to tip-toe - this slowly subsided after maybe 6 months;

2) having to lie on my bed and put my legs in the air to get my tights on - this stiffness in my spine went on for about a year;

3) a never-ending feeling of general unhappiness/mild depression for which I saw a psychiatrist a few months in, who prescribed anti-depressants but I stopped them after 2 months, thinking my body was becoming a battlefield all over again, after the surgery, chemo and rads, then anastrazole. My solution was to have one strong black coffee every morning. Having formerly had a decaf every morning, this solution helped but I never really felt as happy as I used to. (Doubtless any purists out there will argue that a strong coffee is chemically harmful too.)

4) an intermittently cold and sore outer right hand throughout the five years;

5) early morning (4am-ish) mini-migraines mainly in the first year, requiring me to be ill first, then take the panadol extra, then try to rest, then go to work (the 'extra' in the P Extra is caffeine so it did get me to the office!) - I continued to have headaches throughout the five years for 2-3 mornings a week but fortunately they became milder and stopped being accompanied by severe nausea;

6) terrible insomnia all the time, ranging from not getting to sleep at all, getting to sleep then waking at 3am and never getting back to sleep, or not getting to sleep until 3am (and then having to get up at 6.30 to get ready for work (so those headaches were double hell );

7) moderately hot flushes during the day especially in the first two years or so and reasonably severe ones at night but these all tailed off after maybe three years. I hope the anastrazole was still effective as again my modest research finds that this fall-off in hot flushes might indicate its efficacy had fallen away;

8) very weepy eyes in any breeze, warm or cold, although I already had this pre chemo but it got much worse during the chemo (FEC X 6 and I don't know what strength, maybe FEC 75) and never returned to its previous less embarrassing levels;

9) Bone density - horrific drop. My T score for my spine was -0.9 in April 2008 and is now -2.0. My T score for hip was -0.8 and is now -1.5. So I'm now osteopenic. I've been taking calcium supplements throughout but no additional calcium/bisphosphonates have been prescribed by my oncologist to date;

And what's it like being off anastrazole so far?

Well after a mere two weeks the insomnia went and I've sleeping! Throughout the night! Like a baby! And after a month I reckon my headache count has already fallen away - I've only had 4 in October . My right hand doesn't hurt anymore. And, best of all, that overwhelming sense of grey unhappiness has gone. Yes, it could have been tied in with the lack of a decent night's sleep (or vv) but whatever, the sun seems to shine now - even when it's raining.

Hope this is of use.

Skittle

LuvBugs... thank you so much. I'm now hopeful for the wonderful one week and then two week mark, so I can (poof!) feel better. My anastrozole did come from India, so I'm eager to see what the Arimidex will do. Any lessened foot pain would be huge. Again, thanks for the feedback!

proudtospin

Marie, betcha you could find some simple yoga moves to help you by googling on line and if you can find some classes that would be better.

yeap, before I started the stretches...lordie I was stiff! but huge improvement

good luck and have fun!

proudtospin

Marie, I am just back from my gym where I met with my lovely trainer. I told him that folks were asking what stretches I did and he said fine to give his e mail to anyone who asks and he will explain them better than me. Also , he was excited today as another hospital in the area has signed up for his study on the effects of exercise for cancer patients!

I will be happy to send his e mail to you.