For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Purple.....I worked for Big Pharma for 20 years, retired now, so I am well aware of watching the results of meds............I was in marketing research, and knew many of the drugs before they even had names .............
I'm just glad I made it for 3 1/2 years...........thre is something to be said for quality of life.............I had none, but hung in there........even my MO agreed in the final analysis......she said "well you tried, and gave me credit for lasting as long as I did"............
She wanted me to go on Faslodex which is for Stage 1V, and would have needed approval for me to take it...........I told her "thanks, but no thanks"..........I'm done........then like a fool I tried anastrozole........should have quita while I was ahead.......all letrozole SE's pretty much went away right away..was shocked I felt so good 3 days after stopping..............
Dumb me....for not leaving well enough alone............
by the way the reason she needed approval for me to take Faslodex was because i am EArly Stage, and it is stricly for Stage 1V.......wanted to let you know that....plus it has SE's too, and I was done with all of it and did not plan on trying anything else.............and that is an injection.......every month.........they will approve it for people who have trie several AI's........and could not take them
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I hear ya, Ducky. So far, I think I've adapted to the side effects. While not great, at least I feel like there is a point to it and I keep hearing great success stories from Anastrozole. I've drank the Kool-Aid and for now have settled into the mind set of this being what is best for me for now. One year down, four more to go. I think I've finally settled down after dealing with a bout of depression after I was finished with treatment. I hear that's pretty normal, kind of like PTSD. You know, the shock of the diagnosis, then becoming the warrior to get through surgery and treatment, then holy crap, nothing but this tiny little pill every day and see the M.O. once every three months! That's it! Anyway, this is my new normal, working on making plans for my future again. Trying to keep BC in the dark recesses where it belongs and try to make sure I understand what all of this has done to my body and my mind. As long as I can make sense of things, I can say "Oh, ok", and move on.
I am amazed on a daily basis at how fragile human life is, but how resilient the human spirit is.
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Purple.......
I found the easiest time for me was once the initial shock was over, and we had made a plan...I had a wonderful surgeon who literally took me by the hand and led me through it...my family was wonderful (no husband he had passed away), so my 6 kids were there for me every step of the way........
I felt my best after surgery, and was great all the way through 38 Rad treatments......even getting LE did not break my spirit............I started the AI, and had a positive outlook ven though I had heard the same bad stories that I am telling right now.......I kept going, but not until 3 months on the Femara did I get SE's.......the began mild, but only got constantly worse..........
So I went on with my life, no depression, not a bit.......but once I lost my QOL, I could see myself slowing getting in a slump.....not caring, bouts of crying (for no reason), making plans at night that tomorrow will be different, and it wasn't...............
Once I stopped the Letrozole 3 1/2 years after starting and began to feel like myself almost immediately, I thought......damn it was true, I wasn't imagining and talking myself into these SEs...........I would get......."well don't read the insert"........"get a hobby"......"get out and do something"........Exercise".............I heard it all.............but 3 days after stopping I felt better....like myself again, and when I aasked my MO....."is this possible"...........she said absolutely, it can happen that fast."......
Then like an ass.....3 months later tried Arimidex......and you know the rest of the story.......I won't bore you with it again......why of why, did I do it to myself again....only problem is....this time the SE's did not go away.......oh well shit happens.....
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".......oh well shit happens....."
Yes, it does, Ducky. It certainly does.
Take care!
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It so funny to me about the AI's. I've tried both Anastrazole and Letrozole. It seems to me that there is NOBODY who has tried both and could tolerate both easily. People like Ducky did better on Letrozole and the anastrazole caused worse pain, and people like me take Anastrzole without pain symptoms ( I had liver/cholesterol raised) but can't even take a week of the Letrozole and get out of bed. Ducky says it's taken forever for her brief foray into Anastrazole to go away and it took forever for the Letrozole SE to leave me.
So what I would say to anyone who is finding the anastrazole impossible, is don't be afraid to try the Letrozole. Clearly the two drugs work the same way, but are vastly different in how they are compounded. DON'T THROW IN THE TOWEL WITHOUT GIVING THEM ALL A TRY.
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And I had totally different side effects on arimidex and exemestane. Decided I prefer arimidex. As of this morning, however, I'm on a little drug holiday because I've developed trigger thumb.
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My knees hurt so bad from the Arimidex, I hate it. Will be saying something to Dr. When I see her I July. The more I walk the worse they feel.
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I hear you Sherry and if I am not using my knees they stiffen up. I signed up for yoga and had my hot tub serviced for warm soaking hoping it will help. I will see if that helps any over the next month. My doctor appointment is on Monday,
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This is about the best I hav seen this thread........it amazes me how we are all so different.......but for sure bot Let, and Arim do th same thing to knees....
My knees are awful....now since I tried the Arimidex I have such pain in my left thumb at the base toward the palm.....never had that with Let...............yes i had trigger finger, but that was not a lot of pain, it was my fingers would get stuck and I could not get them to straighten out.
Worst thing is I got the bad thumb and palm after I went off the Arimidex, which says to me it has not left my system yet...........which blows my mind since Let was gone i[n 3 days............
Well for you who are still on it...hang in there.....if the Tech was right even if you only can handle it for the 2 years, its better then nothing at all.....hugs Ladies....
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duckyb1 - I had that pain in the base of my thumb - had it before all this cancer stuff started - dr called it basil arthritis and would give me injections for it.. finally the injections stopped working and I had surgery for it in December - little tough recovery from surgery - had to go to occupational therapy but now 6 months later - no pain... and doc said it will never come back..
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IAmNancy, how wonderful that your surgery turned out so fantastic. You have to be happy! (And nice to know it won't come back). Have a good weekend and try to stay dry!
HUGS!!
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Well, as I have just learned, a trigger thumb actually starts in the base of the tendon, right there in the palm. Mine was painless for a couple of weeks; my only symptom was the snapping when I straightened my thumb. Then that tendon base got really hot and angry. Have been trying Aleve and a brace for a week or more. Kind of hopeless, as this was exactly when I moved my office into my house and have been misusing and abusing my hand for two weeks. Yesterday, I contacted my onc, who suggested starting with a two-week holiday from the arimidex, the letting him know how things are going. This is day 2.
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oooh that sounds like a nasty thumb, do you use any heat or ice to help it? never had that issue, bit of carpel tunnel but able to keep it calm with a wrist brace when it gets crankie
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Yes, I've used ice. Also love baths, so that's heat. I know cold is supposed to be the way to go, but something deep inside says heat is good too! I'm particularly impressed that my onc thought a drug holiday would be a good place to start. Does acknowledge, doesn't it, that arimidex might be the culprit.
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i had trigger thumb in the early months of arimidex in both thumbs which resulted in some powerful f-bombs being dropped when I would have to straighten either of them. Fortunately for me they both resolved without medical intervention within a few months but I do remember it always felt better after a hot shower or a dish washing session so I tend to agree that heat may be better than cold in this case. I've also heard of some who say cortisone shots help. Hope you get some relief soon.
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Remember I was on Femara, then letrozole................trigger fingers after being on Femara for 3 months....nothing before that...and it was not my thumb......"fingers" was the problem.............eventually that cleard up after a few months.....then went away completely........
Decided to try Arimidex just to make sure my SE's were not all letrozole related, and possibly another AI might be kinder.......................well forget that.....Arimidex was much worse............after a 3 month vacation....from FEmara/letrozole..........80% of SE's gone.................on to Arimidex...........after just 3 days.....killer SE's........3 weeks and I stopped...................after stopping I got the "thumb and palm problems and still have them after being off it for 6 weeks......................knees still hurt terrible, and my back...............you could not pay me to take another Arimidex pill........sorry I ever tried it.........much worse then Femara/letrozole.....and that was bad enough..........
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So I started the femara not long ago after having bad SE's with arimidex. I am working up from a 1/4 dose and so far I don't have the SE's I had on arimidex. My side effect profile:
Arimidex - pain! Itchy, burning, peeling scalp.
Femara - wicked hot flashes.
Hope it stays that way! I can deal with the hot flashes. Amazing how different we can be!
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See- if you tolerate one, you can't tolerate the other! Damn that's amazing.
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If you can't tolerate Anastrozole or Femara then there's always Exemestane.
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I could not tolerate either, but would not take Arimidex if they paid me to....
The others have contraindications.......blood clots is a big one of some of the others..........so I gave up on all of them....0 -
If you could afford it. Generic exemestane $200-300 a month w/o insurance. $75/mo with our insurance, which is pretty good. So........ yeah. Not happening.
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I have BCBS HMO and pay an $8 co-pay for exemestane. $10 if I spread the deductable across my meds. The one company producing it now has competition, so the cost may go down. I'd say the high cost is due to particulars of your insurance, not so much the medication. If I paid less for arimidex a couple years ago, it was only because the generics co-pay was lower across the board.
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the cost of any of the meds are related directly to your particular insurance plan. Mine was a plan for small business in Nj and the owners chose a plan with hi deductibles for meds. Hey, they were healthy so it was not an important thing and they just wanted to save money. Course when I got to medicare age the costs came down hugely! even when I hit the donut hole it is less money
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Generic exemestane can cost a lot less if you use GoodRX. I know with my last insurance I found it was cheaper to go GoodRX than use insurance. It will find a coupon and show you the lowest prices in your area. Totally free
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I found heat is helpful for trigger thumb. I wrapped my hand in the heating pad every night until I fell asleep and the pain went away although it still doesn't bend as far as it used to.
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Thanks Ducky, that helps and it all makes sense.
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The coupon/card I got from GoodRX said it is not valid for those folks on Medicare
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OK, I give in..........when I go to the oncologist Thursday I'm going to ask if why I hurt so bad is this pill??? Although I am more active then before it makes me wonder.......just a little scared to try something else and have worse side effects. I don't have hot flashes, but I feel so crappy in the morning with my bones I could cry.And it takes me hours to get moving on with the day. So wish me luck. I was told by a friend the only way to figure it out is to go off the pill and see if it helps, hmmm should I go off now for my appointment on Thursday??
Mary
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Mary, I would tend to say "wait" until your appointment. But I can't tell you what to do. Whatever feels right for you I guess is the right answer. Does Tylenol or an NSAID help you at all? Some ladies have taken supplements that help (but I can't remember which ones
). Many gentle HUGS to you!!More HUGS!!
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Mary...........it is a tough decision............I hung in there for 3 1/2 years.................as I said "sorry I tried Arimidex"........but I had to give it another shot..................and as before.......I gave it up...........hope 3 1/2 years was good enough.......
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