For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Good morning to all my wonderful ladies...........
Yes the foot pain is the AI's....however.....that did not happen to me until around the 3rd year on it........and to be honest, I handled the pain really well.........I never took pain pills as I already said because I didn't want more SE's.............I think the thing that got to me the most was the "dizziness, and the problem with my balance"............and trust me that was bad...........I also had a hard time "keeping up", and that made me so depressed.........in my head I felt like 25, in my body I felt like 90......and that was not me.........I was always on the go......I was '63 when I started watching my 17th grandson, and 2 years later his sister was born.............I did that for 15 years.............even after a heart attack and then BC...it kept me alive......
I use to drive with my daughter to Pittsburgh from Philadelphia every Saturday for 4 years to watch my grandson play football for his University.....that was a 5/6 hour drive to Pittsburgh, and the same drive back home....we never stayed.......so it was a 10/11 hour drive up and back.........then when he was done I had 2 more grandsons who played for their college which was 1 1/2 hours away........climbed the stands with no problem.......even after my surgery for BC, I continued to do it......but I could see myself getting slower and slower..........again once the AI side effects started which took 3 months............
I have a home down the shore, going to the beach was a problem because of the walk in the sand.....it was a killer on the painful knees and thighs........but I tried to keep up.....going to the store became a chore, because I could not walk that far without a cart to hold on to......................I stil don't feel like my old self, but a decent amount of the pain is gone..............just wish when I went off the letrozole I would have not tried Arimidex............found that to be worse......not with regard to the pain......it was pretty much the same........but after giving up the Arimidex which I took for just 3 weeks, I sitll have many of the SEs.................with the letrozole they were gone in 3 days......I felt like a new person............"my bad"........but I had to give myself every chance.......wish I had just "let it go".......
So to keep myself a little busy now, at least one day a week, I told my grandaughter I would watch my great-grandson for her so she could continue to work......her mother has the other day, and she works 1 day from home........its not easy, but it helps me to feel useful..............
I wish you all well with the AI's.........just do the best you can.....give yourslef every chance, but don't give up quality of life...........what fun is life if you are in pain all the time, or if you can't do anything, and have to sit and watch the world go by....
Oh, and there are those who will say "get up, walk, go to the gym, exercise,........then you get..............."well if you exercised it would help with the pain"....................and I do belive that.............but can someone tell me how you exercise with painful knees and feet........sure it might help.........but how do we work throught the pain to get to the eventual "relief"...............I belong to the Y............do you hear what I said "I belong", I didnt say I "go".............I did before "the pill"........rant over........hugs.
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Yes, entirely different. I'm sure what the Taxotere left me is small fibre neuropathy. A fancy term for nerve damage. I had a severe allergic reaction to it. If it was just in my hands and feet, it would be called Hand Foot Syndrome. I had it ALL over my body.This is in soft tissue the AI pain is in my bones.
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have foot pain, got a swollen knuckle on one finger last month and another one today. See the MO in a month. Seriously wondering if I should ask to switch to Letrozole or tough this out.
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meljo614, I'm 59, was 58 at time of diagnosis and my doctor says 10 years. She said this is a new recommendation because they did find that a lot of women had recurrence after stopping at 5 years, so they say 10. She did say things change all the time and who knows, they may later move it back to 5 but for now, 10 is what I am doing.
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Honestly.............I don't think they have a clue..................!!!!!!!!!!!!!!!
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knowing how I feel now after 5 years, the pains do not go away, I am glad I was only DCIS and could stop at 5 years
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When you really research all the trials and the comments, and answers about AI's you come up with many different theories about what is right and what is not needed.....
I have asked and heard.....take 1/4 pill or 1/2 pill, or every other day as a starting dose......only for that to be contradicted by another person, or MO, or part of some trial finding........so what do you believe...and who...........
I have read and been told......try to get at least 2/3 years with AI's because they do their most killing of estrogen in the first 2/3 years.....then I was told 5 years......now they are talking 10 years.......what next............."for Life"...............or what about the women who never took AI's and are still here to tell their story after years with no "PILL"...........
I have known people on AI's who have taken them, suffered through all the SE's and still had a recurrence........others have stopped, and had no recurrences.........then there are those who did everything by the book, and are still worried about whether their "pain" is going to be worth it..........then there are the women who have had no probelms at all.......
So taking all that into consideration is it any wonder why "we still don't have answers"............you do what you have to do........what you think is right for you..............not what any "Trial"........."MO".........or "what your next door neighbor did for her BC"
You do what you and only you decide is right...........because in the end.....................
Isn't it really about "YOU"............hugs.........
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thank you Ruthbru for the raisin recipe! Gonna try it!
Ducky. I think you just summarized it perfectly! No one really knows what this cancer crap is all about. For the record my MO said for life. So am gearing up for that. :-(
Have a good weekend all!
O2
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Hi Peggy!
I am now at 3/4 dose letrozole and the SE's aren't too bad. What a BIG difference from the anastrozole! Just goes to show you how different they can be.
My MO said AI's for l0 years!
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Redheaded1 wrote: "my sunshine--it's the estrogen that is made when our adrenal glands convert aromatase into estrogen."
Okay, a question for all of you--I only have one adrenal gland-the right was removed in 2007.
Do you suppose that might be a good thing for me? Trying to find some positive feelings here today..and I had never heard this before!
Claire
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Geeez, did they tell you anything bad would happen w/o an adrenal gland?
I guess it could be good for you now, but I never heard of that.
Did you ask your MO?0 -
I had hyster & ooph 30 years ago, one ovary left. It pooped out years ago. When MO was telling me about my reocurrance risk, he said my weight could be a player. It's true estrogen is made in other areas of your body. I'm pretty fluffy, so far this dratted pill is earning its keep.
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Hi redheaded1, I had a pheochromocytoma dx in 2007--a rare dangerous tumor--they grow on adrenal glands. So the only way to tx is to remove the adrenal. The other adrenal picks up the slack. No change in physiology to the normal person like me-but now I wonder if not having one might be a good thing, although if the remaining one picks up the slack, I suppose it could also be converting the same amount of aromatase into estrogen, too. Any thoughts on this, ladies? Just curious. I asked my MO about it once and she didn't seem to be too impressed.
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Do you still see an endo? S/he would be the best to ask, that's their specialty.
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Finger on anastozle0 -
Hi ChloesMom!
I am back from vacation! Going to Shaw's for strawberries tomorrow.
I had horrible arthritic pain on anastrozole. Switched to letrozole and much better! Maybe your MO would be willing to give it a try!
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Chloesmom,
I have two toes that look like that. Next joint on each starting to turn into hammer toes. Top joint on trigger thumbs swelling too. I tested negative for rheumatoid arthritis, which doesn't necessarily mean I don't have it. Anyone else have this type of swelling too?
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another finger looks like that on the middle knuckle. It's twice the size of the one on the other hand now
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my fingers are starting to look like that, ortho guy says it is arthritis but not sure what type
I am heading to ortho this morning as my dumb feet and back are messed up and PT has not helped them so maybe I will get a diagnosis
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I have arthritis but when the other knuckles became an issue in the pad they didn't swell up like this. They were just progressively sore and stiff. This is a flare up type of situation. One week it's fine. The next it's double in size
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DH and DS threw me a surprise birthday party Saturday. Just wanted to share a pic. So much fun!
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melio....so nice to have a surprise party!
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Mel- Happy belated birthday. Beautiful pic. ty for sharing.
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HAPPY BIRTHDAY TO UUUUUUUU0 -
Happy Birthday Meljo!
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Well I received my Teva Anastrozole from CVS Caremark in the mail today. I've been on the Accord brand for a little over a year. It took me awhile to figure out that it was probably causing my foot pain. I just kept thinking it was a shoe issue or something else. Anyway I've made a note on my calendar, and I will be interested to see if it makes a difference. Fingers crossed!
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My index finger looks like that too. I can sometimes feel a fiery burning in it, as if a bee had stung me. My mother had arthritis and knobby fingers as she got older, so I do not know if that is what it is, or is it caused by my Teva.
My oncologist had originally told me that I would be on Arimidex for three years, then switch to Tamoxifen for two years. Later on she started saying I was to stay on Arimidex for ten years. Last visit she said probably for five years, so I have no idea what the future holds, pill wise. I do know that when I get up each morning I am so stiff I can bearly walk. I do warm out of that and can move fairly freely during the day. I find I get stiff if I sit anywhere too long. Getting up from chairs or couches can be a problem and getting up off of the floor or ground is a project. I usually need something to hold on to or to push my self up with.
I used to be able to move freely and easily before cancer. I am not heavy at 5'8" and 140lbs, though I have gained weight since being diagnosed and treated because I am not as active as I used to be. I tire easily somedays. I feel as if I have become my mother when she was in her late 80's, but I am only 66. I tell myself that if this is the trade off for remaining cancer free it is worth it.
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Hortense I am 62 an could have written your exact post. Walk like Frankenstein when I get up in the morning and it's a chore to get out of bed. Such a co trade from the activity BC. I went to silver sneakers class today and couldn't keep up with the 80 year olds there due to stiffness. Had some arthritis in other fingers in the past but it didn't come on so quickly and the joints weren't so knobby
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Thanks Jilly. Bless your DD! I can't tell you how much it does effect your self esteem and stays in the back of your mind that your body isn't "normal". I'm glad she can look at who he is.
. It's encouraging to me.How's it going on the Teva brand ?
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Thanks for posting the pic! I have this issue on my left middle finger and wondered what the heck caused it.0
