For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Ditto what Peggy said---prayers for healing all around.
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It worries me because so much time has passed from dx to taking AI. I had healing issues and MO wanted me to wait. Now this reaction issue.
I discovered my lump before Christmas. It took over a month for dx.
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Was on Letrozole for 3 1/2 years...........only SE I did not get was hot flashes............so bad I finally said enough is enough..........took a 1 month vacation....Dr. approved........felt so much better off it, I decided to take another 2 months..........
I agreed to try Arimidex and finally bit the bullet and bought 30 pills..........started taking them and within 2 days the SE's were beginning again.........did it for 3 weeks, and have stopped again...................lucky the ladies who get no SE's.................so I made another appt with my Onc for next week..........she will not be happy I am certain, but I have had it...............can't do this anymore............I want my life back no matter how many more years I get.................sorry ladies had to be honest.................my life on Al's was not Rosy............
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Jilly, I think you needn't be concerned. It was about 3 months after my lx that I went on my AI. Your MO knows what he's doing. HUGS!!!
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Ducky, HUGS! I'm sorry that you have had such a bad experience on AIs. I understand why you want to quit. That's a decision only you can make. However, whatever you decide, don't second guess that decision. Just look forward and be positive!
More HUGS!!
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Oh Ducky, sorry the med is giving you issues but sure you have given this much thought. Ever consider just doing every other day?
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Proud...........not sure even that would help...........since being off it for a couple weeks, what SE's I had should have eased up by now..........
I was truly hoping for a miracle....my SIL's mother was on Tamox for 10, then Arimidex for over 5, and has had very few problems......claims her feet bother her..........but guess what............Say Deserts ready and she will knock you down to get to the table......................While she is eating her desert, I am still trying to get out of the chair and straighten up to walk.LOL
She had a tumor 5cm at 51........node involvement, and it was a lot.........had a mastectomy........Rads, and Chemo..........vomited iwth Chemo that was it........
On Tamox.....no SE's for the entire 10 years................had a recurrence at year 11........small tumor on the other side...............took that breast off....no chemo, no rads....................started on Arimidex.........has taken it ever since and has had no SE's......just recently sore feet.................
Explain how that happens................she is a 27 year survivor in Nov. 2015...............
I was wondering if women who start out on Tamox, and then go to an AI do better on the AI then those who just do the AI after surgery because they have gone through menopause............this is her on the left with the white hair.....she is a year younger then I am.
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no idea, I never did tamoxifin but can tell you I have the worst dumb sore feet with nasty balance issues,
I blame my feet on stupid stuff I did when I was younger but do believe it got much worse with the stupid AL
I just saw an add for something for diabetic foot issues that is some sort of vibrator or something, gonna check it out at Walgreens on next visitmaybe we need a good vibrator~~
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27 year survivor...I want that!!!!!!!!!!
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We all want that, Jilly!
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If I get to be a 27 year survivor I will be 100 years old........LMAO...........so that is asking a lot.......hahahahaha.........remember, you ladies are all toddlers next to this old broad.........or maybe you don't know my age......I'm 80..............LO
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Ducky, I'm turning 70 in July. I'd be 96 - works for me
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Just past my 4th year since dx..........
Proud.....I had the foot thing so bad......guess what.....when I went off the Letrozole it all went away.....no more sore feet, so it is the stinking AI that does it...........and when I started the Arimidex several weeks ago...........Bingo....it came back within 3 days........
The part that surprised me was I was on Letrozole for 3 1/2 years, and it took only 1 week for my SE''s to ease up...actually some 2 days after stopping........
The Arimidex not so.....took for just 3 weeks, and still have the SE's after stopping 2 weeks ago.......hoping they go away............
I think the aches and pains were bad, but the worst thing was the dizziness, and the poor balance........I thought.....Ok, if I fall from this friggin medicine causing me to be "loopy"............I break a hip, and I'm worse off then before.......so your damned if you do, damned if you don't.............
Now the MO had suggested Faslodex, she said I would have to be approved, and some women don't get SE's from that one............it is an injection into the muscle in your "butt".......................
So..........I read up on it very carefully..............its not dam better then the crap I have already taken........and its a shot in the butt once a month............mostly used for Stage IV cancer patients, that is why she needed the approval to give it to me..............again I'm thinking "no thanks"........
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Ducky, sometimes they will prescribe Tamoxifen for women who have issues with AIs, which you obviously do. You might ask your MO about it. HUGS!
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Peggy........already suggested...........have had 7 deep vein blood clots.............she nixed that immediately..............just my luck.....right............now I could have lied and taken my chances............LOL
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Better that you didn't lie, Ducky. Don't need more blood clots. Those are scary. Maybe you will have to consider not taking anything? Is that an option? Good luck!
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Oh that is my decision.........already stopped it all...............but scared out of my wits what the outcome could be...............however their is somthing to be said for QOL..............
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Ducky, did you have an oncotype test done? What were the results? Did taking an AI/Tamoxifen make a huge difference? QOL is definitely important. As scary as it is, it would seem you have made the best decision for YOU. Now that you have made it, don't look back. You know that second-guessing yourself is fruitless and a quick trip to craziness.
HUGS!!!!
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well my time on the AL ended last Jan and hate to tell you but the dang feet still hurt'
I had a bad case of vertigo a couple of years ago and recently had a lousy lower back problem
since I am allergic to NSAIDS that means basically I can only take Tylonel
so....I got PT script for therapy and oh my goodness! major improvement. Feet still stupid but the balance and back pain, tons better
love my PT person, she gave me a sheet of stretches to do every morn and night and dang but better
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Ducky my PCP told me that many of her patients have issues. Some don't even get through a year. She was impressed I was on it for 3.5 years (at time of discussion). I into my 5th years. They are going to have to work really hard to get me to do 10. My oncologist didn't want me on Tamoxifen but did say it would be better than nothing.
Proudtospin my feet are sore too. When I took the break from Anastrozole the soreness was gone. More on Exemestane but I can deal with it granted I had a really bad fall 3 weeks ago and left part of my chin on the sidewalk. 3 stitches. But it was Chicago sidewalks. They are so uneven.
BUT sore feet can be left over neuropathy too.
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Peggy my oncotype score was 8....excellent according to my BS, RO, and MO......
I did 38 Rad treatments which included 8 boosts directly to the tumor area........
No node involvement.....all clear margins
1 year of Femara.....2 1/2 years on Letrozole..........tumor was 1.2 cm........
3 weeks or Arimidex........
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8 is a really good score, Ducky. I had 33 rad treatments. All things seem very favorable for you. It's a crappy decision to make, isn't it? HUGS!
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Yea it sure is...........
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Pegg,
Since my first diagnoses in 1990 it's been 25 years, and that was with triple negative back in my 30s, now I have another primary in my other breast diagnosed last Sept, but hey I was given a poor prognosis the last time around and I have been totally disease free until just this last year. Hoping for another 25+ this time around.
My doc explained how arimidex and basically all the hormone blockers work, she also said that since I was put into chemo pause back in 1990, the changes with any AI shouldn't be much of a change for me . Here's hoping
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Suladog, definitely another 25 years PLUS! I also doubt that you'll have much of a problem with menopausal type SEs with any of the AIs. You probably will do just fine with Arimidex. What bummer though after 25 years. Has your course of treatment been better or the same as last time? Have you tolerated it better? HUGS!!!!
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Ducky- does she not want you try Exemestane? (Aromasin). I wouldn't throw in the towel until I'd tried them all. My doctor had me off Arimi\dex 90 days, then I tried Femara (took 4 tablets and SAID HELL NO) so then he said wait 2 weeks before I went back to Arimidex. It took the full 2 weeks and I was still feeling those 4 Femara (Letrozole) . .
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Pegg,
Last time I had CMF for 8 mo, Taxol was much rougher worse SEs, different from CMF. Taxol made me anemic, I'm still taking iron, and the issue of nausea was worse. Also I lost my taste buds on Taxol, which I am told will come back but still...I'm 2 wks PFC and still have nausea mainly from the herceptin I'm guessing. Hopefully the next dose of H will be easier since I'm on it til the end of January. Having my 3 mo MUgHA test on Thursda
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Suladog, Thank heavens you're done with the Taxol. My DIL had chemo for colon cancer and she also had taste issues but they came back. I'm sure the ladies who have had or are on herceptin can chime in as to its side effects.
I do agree with Red that you should try all the AIs. If you haven't tried Aromasin, it might be worth a test of it. Also, sometimes the SEs are caused by the fillers used in making the pills and changing manufacturers might do the trick. Just a thought.
Good luck with your MUGA test Thursday!!
HUGS!!!
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TEVA brand of Anastrozole has been a miracle for me and decreasing MAJOR JOINT PAIN. I've been on Anastrozole for 2.5 years. At first, I could barely walk...Onc wanted to switch me, but I wanted to tough it out. Then about Month 18, things started getting better. My mom (also a BC survivor) was taking Anastrozole and had an extra month's supply. I took hers and IMMEDIATELY felt better. I noticed hers was TEVA manufacturer - but she gets her drugs through the one of the Medicare providers not available to me. I took note, but when I got my script refilled, BOOM, joint pain hit with a vengeance - another manufacturer. Again, I was having trouble getting up from chairs and making those first few steps.
Finally, I got it and called every Pharmacy in my town, and out of 10, only Walgreens carried the TEVA brand. I've been taking it for a week. WHAT A DIFFERENCE!! Pain went from like an 8 down to a 3. I feel like I got my life back again.
I'm sure this has been talked about on this forum. But wanted to share my experiences just by changing manufacturers!!
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I worked for 15 years iwth Big Pharma......2 of my daughters still do....same company......one is a Director, nad the other is a Sales coordinator both 27 and 30 years iwth the same company.
I worked in Marketing Research, so I know a lot about Meds......that is why I don't like taking them....
Over the years I have spoken to and interviewed hundreds of Doctors of all specialties......even before a new drug had a name I would ask them what they thought a good name for a drug would be.
People will tell you that the generics are the same.............not true.......only the compound has to be the same......the dyes and the fillers can be whatever each Mfg. chooses.................and it is true........where one can literally put you down, another can cause less SE's..............
Basically 98% of AI's are problem causers........no one gets through them without some SE's......many women have 1 or 2......some get them all...............
In fact some get SE's that are not even on the Package Insert.........but try to convince an MO that your SE is real.............most of them have no clue what the Package Insert says, cause the majority of them 1/2 listen to the Rep who is talking to them, and the rest never look at the Package Insert..........
I have used Femara Brand name......horrible........then I went to Teva Brand......a tad better, but still bad...that one caused neuropathy in my feet where Femara did not..................then I tried the generic for Arimidex.....(anestrazole) nasty drug........not sure who made it.........hold on, I wi ll look......Ok, its TEVA also...............now that is because I told the "Mail Order" I wanted only Teva Mfg. drugs, and they are complying..............
So I have run the gambit of what to do to stay on this Med for at least 5 years...........just weary of it all.................
The AI's are doing exactly what they are suppose to do...........kill you Estrogen..........and while it kills the Estrogen, if your one of the unfortunate ones with the "bad side efects", and I am not talking about "hot flashes".........If I just got that, I would not be complaining..............that was the only one I didn't gdet.
Well thank God for small favors.............enough said.......
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