For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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MySunshine, go to your profile and ADD a diagnosis, treatment, surgery etc. Then make it PUBLIC. See if that works. HUGS!!
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Early stage high risk seems to be offered 10 years of AIs. This means if you had node involvement (not sure how many) or a large tumor (as in my case) you might get a recommendation of 10 years. I was diagnosed at age 49. MO has hinted at the 10 years and considers me high risk for recurrence. My tumor was 30% ER and 5% PR receptive. When I mentioned it to my MO she said it doesn't work that way. Was not happy with her at that meeting so I didn't ask any additional question as to what she meant by that.
Exemestane will permanently bond to the estrogen but your body will produce more. That's why you need to keep taking it.
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Hi all -
I am 56. ER 90%, PR 5%...negative nodes. Tumor 2.5cm.. MO said 10 years of AI's.
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I'm 69 and very ER/PR positive (mine wasn't done with percentages). Last fall my MO said 5 years. Recently he said maybe 10 years. So far, that's fine by me!
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got to go day by day and hope the best
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Exactly. For this whole journey...one day at a time. AND positive thinking (which never hurts).
HUGS!
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my sunshine--it's the estrogen that is made when our adrenal glands convert aromatase into estrogen. That's why we "inhibit" the aromatase....... ( I had a total hysterectomy at 42, so I very confidently told my MO, I don't have any estrogen, and then he dropped the anatomy lesson on me......and said oh yes, you still have some, and enough to make your cancer......0 -
Red, amazing the half-information we get. Two years ago, I'd have agreed with you - hysterectomy = no estrogen. My we've all learned that ain't so.
HUGS!!
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So far, the recommendation for people around here is still 5 years. Studies have not yet shown that longer is better (and really, I don't imagine any of us want to take something if it isn't do us any good). I think you have to take a lot of things into consideration. I can see the 10 year Tamox, recommendation, because most people on it are younger; and have lots more estrogen roving about to begin out with. As you age, your estrogen level naturally drops....so with of the passage of time, your levels should be lower after 5 years of arimidex because of your age alone. Also, your chance of recurrence does go down as time passes, so you have to weigh the other real or potential side effects of long term use with your recurrence risk. The answer as to what to do will vary with diagnosis, quality of life issues etc. For instance, if you were 75, had a Stage I diagnosis and were having problems with Als, it would probably be stupid to stay on longer than 5 years (if that long). If you were 55 with a Stage III diagnosis, then it would make perfect sense to try to stick out Als for an extended time.
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Ruthbru, read the first half of your post thinking, yes good advice, 5 years will be enough since I was 63 at dx~~but then got to the second half. If it is really looking like 10 years for Stage III then somehow I suspect I will be one of those. But I see my MO on June 22 and will see what she says then. I am high risk for recurrence~~37% I think and when I look back I am pretty sure that the AI is one of the biggest guns in my arsenal.
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Well, let us know what the doc says. A friend of mine, who was 53 at diagnosis, and had a similar diagnosis to you was told that 5 years was it. According to her doctor, the studies have been going long enough that if there was any significant bump by staying on longer, it would have been leaked by now. So basically doctors are just guessing at this point when they make their recommendations. Not particularly encouraging!
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Ruth..........eveything you say makes perfect sense...........it all depends on the individual case............
I have heard of early stage cancer which recurred, and I personally know women with large tumors and node involvement at the age of 52, who had a recurrence after 13 years, and 12 years later at 79 is still alive, and kicking................
My MIL had a huge tumor.....had an mx and Rads...no chemo.......she was 64 when diagnosed, never had a recurrence......died at 96 from old age............and there was no Tamox. or AI's back then..........go figure........
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My MO has said she is only recommending five years right now since there isn't any proof that ten is better. But she will let me know down the road. I'm only 42 so I'm guessing she will eventually recommend ten years. I'm willing to do it (as long as the SE's aren't horrible) to be able to see my kids grow up.
The stiffness has definitely gotten better. Still stiffer first thing in the morning but better during the day. I do exercise seven days a week. Not sure if that's what is helping.
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ducky your MIL might have been hormone negative. Seems hormone positive, especially the slow growers tend to recur far out.
Ruth it will be interesting to see what my MO recommends next March. She does consider me high risk due to tumor size (stage IIB). She better have some strong evidence that I should stay on this for longer. She does tend to go with what the studies say.
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Just read this article posted by Dr Susan Love Foundation and thought it might be of interest. Anastrozole vs Tamoxifen
HUGS!
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Gal's lets form a pac----just take it ONE PILL AT A TIME...........
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Which what we're doing anyway. One day at a time. Works for the PILL too (my how the meaning of that word has changed for me
)HUGS!
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gee, was watching Today show and they all tried to come up with a hated word.....well guess we have one! the PILL
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Hi everyone. I have not posted in awhile. Thought i come in and read some post. Hope everyone is doing well.
I am still taking my pill and recovering from a hysterectomy (which i shoould of had before i got BC. All is neg. with hyster. So far i have had no bad side effects from the Arimidex. The only thing is that i can't sleep a full night and i can't say its the pill because i am still in recovery.
I go along with the one day at a time-- thats the way my life has been for 3 1/2 years since my sister got diagnosed (diffrent kind of CA). So why change my pattern now.
Proudtospin- I will add another hated word to yours-- maybe we will make a sentence. Cancer pill.
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Jes, yeap and of course we have the lovely term Side effects!
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Well, Iwent to see my oncologist today and she said my pains are from the anastrozole, so she made a few suggestions to change if I wanted and explained the others SE's for those and then offered me a study they are doing. So I agreed to the study, I stay on this anastrozole and will also take cymbalta. "The purpose of this study is to better understand why some breast cancer survivors who have chronic pain are treated with duloxetine will have their pain improve, while others will not." So I will start them tomorrow, I was taking tylenol and motrin but nothing worked so she agreed lets give this a try. I figure this whole cancer thing is a crap shoot and I need to be taking the anastrozole so I'm willing to try anything to stop this pain...........so send a few prayers my way please.
Thanks to all of you for your input on my issues. I hate being a cry baby but it was comforting (as I was in tears) telling her how bad I hurt.
Mary
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Mary I highly recommend anastrozole + cymbalta it worked for me for two years with minimum side effects I now take Aromasin and still take cymbalta because the cymbalta was prescribed for depression before mbc I hope it works for you too
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Mary, my best thoughts for you as well. Dang but these SEs are a pain!
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Mary - good luck with your new treatment. Pls. let us know if it works for you.
You are not a cry baby you have the right to try and get some relief from your pain and beside i think we have all cried and complained at one point or another. Thats why we are here. Positive thoughts and prayer going your way.
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Mary.........my heart goes out to you......I stayed the course for 3 1/2 years on Letrozole.......it was brutal.....nothing helped, and I refused to take another drug which had more SE's to get rid of the SE's Letrozole was causing...........I could barely get out of a chair, and I looked like the "tinman" trying to straighten up once I did get out of the chair........I broke 2 vertebrae and had surgery for 1 of them.....the other I waited too long and it healed and they could do nothing.......they suggested a shot in my spine.......I said "thanks but no thanks".......I felt like a pharmacutical experiment............
I have stopped, but at least I got 3 1/2 years.....if stopping was a mistake I will pay the price later, but there is something to be said for quality of life...................
Many get no SE's at all.....some get very few........they are the lucky ones.........I had vetabrae surgery, 2 rotator cuff repairs, torn ligament surgery in my wrist, thumg, and a surgery for 2 torn cartlidges.....in addition to 6 children 2 natural births.....(not a hero, didn't get to the hospital in time), plus 3 dental implants...........so I know pain.........
I did not consider myself a cry baby........I tried, damn hard for years and wanted to do my 5, but finally said enough is enough............Did I think "positive".....your damn right I did........I have lots to live for......6 kids, 18 grandchildren, and 5 great grandchildren, and another due next month...............plus a grandaugher getting married in Novemeber..................my children lost their father at 57 years old to Pancreatic cancer, and he only saw 9 of his grandchildren.................I was going to do my damndest to make sure I was here for them, even after having a heart attack..........
So your not a cry baby.........it hurts.......it damn well hurts, and unless you are living with the SE's of AI's you have no idea what it is like.............
But do it for as long as you can, however you can......you owe that to yourself, and anyone who loves you........hugs, and good luck..............
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How is pain in feet different with anastrozole vs neuropathy? Have the numbness and burning of neuropathy but also aching with walking that comes and goes. Have AI related swelling and pain in knuckle of 5th finger that feels like arthritis wondering if I have both in foot
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auroaya, thanks for letting me know of your knowledge of cymbalta, truth be known I probably should have been on it from the beginning of all this if its for depression also!!! I sure could use a lift. Hopefully if I can get rid of this pain, that too will lift some spirits in me and I may even be able to get some well needed housework done. Hope everything is well with you and again thanks for responding.
duckyb1, You are a Rock Star!!! With so much that you have and are going thru and you still pop up and tell us to stay on it as long as you can. I love that! I know I have to be on it, but was really amazed that my doctor was so comforting and said we will get you relief but we need you on the pill helps. Yes I have 3 kids, and 6 grandkids they all need me as much as I need them we are all very close. I will fight til the end. I do understand the quality of life issue for you, after suffering for almost 4 years I'm proud of you and I'm sure everything will work out for you. Thanks again for being strong for not just your family but all of us here too.
Jesika63, thanks for your positive thoughts and I will post and keep things updated as it may help others. I do alot of reading on the boards just not much posting. But I appreciate the positive thoughts and prayers.
proudtospin…, thanks for understanding! The SE's for this stuff is terrible if you end up with some of them.
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I had a small amount of PN in my feet from diabetes. Then Taxotere left me with more. The pain I feel, when it gets bad, is in my ankle joint, and the bones across the top of feet. My ankles feel like they will buckle out. I need my cane, but can't use it because my hands hurt so much.
That's when I take a few days off from the pill.
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so Spookiesmom. The taxotere pain and the AI pain are the same?
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The numbness and burning is probably from the Taxotere, the aching is probably from the Al.
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