For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Sula, dare I say congrats to you? sort of sounds good to me, best wishes on your decision
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Suladog, that's really interesting. Must be new thinking.
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A few years ago (sometime after age 50, but pre-BC--I'm 57now) my PCP ordered a bone density test. Turned out I had osteopenia. I started taking calcium almost every day. Fast forward to early this year (post lumpectomy, chemo, and radiation for BC), my MO ordered a bone density test prior to starting me on arimidex. He said that if I had any osteoporosis, he'd want to put me on Prolia (I think) or something like that in addition to the arimidex. The results from the MO ordered bone density test showed NO osteopenia or osteoporosis, so no Prolia. YES!!! I had already decided that Prolia would NOT be an option for me.
Regarding SEs...I'd love to say that my weight gain is due to arimidex, but unfortunately for me I'm sure it's much more closely related to Ben & Jerry's ice cream than any med.
I have some mild hot flashes, but they aren't as bad as the ones I had during menopause.
I did have a bit of moodiness a month or so ago, but I think there were other factors involved, not just the arimidex. I haven't noticed any joint pain, other than the periodic hip pain which I had pre-BC, so I can't really attribute that to arimidex. I do take fish oil, and when I miss it for a few days or more, then I have the hip pain.
I do have an on-going mild sore throat which I do attribute to the arimidex, but not really anything else.
All that to say--pay attention to your body. Don't *expect* SEs from arimidex (or any other med), but be aware of what might be, and what might be caused by something else.
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Pegg,
I think since I'm HER2+ and have done the Taxol and Herceptin, still doing herceptin I have been told more or less that the hormone part was not that big a thing for me, but had I not done chemo and herceptin that would be a biggie. Even my guys at Cedars Sinai in LA didn't feel the hormone thing was most important for me and said that they'd stop it if I had any problems and that was before this hormone test. I'm very curious as to what the suggestions are, since this mo, (who is one of the only partners in the practice who is a woman, who also runs the survivors program which I was part of , since I'm looking at 25 years since first dx) said this separately from her partner who has been my main mo, and she had no idea he'd told me nearly the same thing as the LA guys. She had been the one reassuring me that I'd do great on arimidex given I've been in chemopause since George Bush the 1st, so it was very surprising hearing this from her this morning, "we have to rethink if you even need this stuff" I'm so glad I asked for the test.
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Suladog, I'm glad you asked for the test too. No sense in taking any medication you don't need.
HUGS!!
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Both are bad for SE's at least in me...............but I have to say Arimidex was the worst of the 2........I repeat on Letrozole for 3 1/2 years......off for 1 week felt 75% better.......
Tried Arimidex........to be safe......thinking it might cause less problems...........
Horrible problems......went off in 3 weeks..........still have the SEs after 1 month off it.
So afraid they are never going away...........
Plus did not get SEs with Femara (letrozole) for 3 months.
Arimidex got the SE;;s the 2nd day I took it, and it got worse in the next 3 weeks.........would never take it again..................so sorry I did............
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Sula, my MO required a bone density as a baseline right before I began arimidex...she's that good! I'll probably have another in a few years; no problems with my bones. I'd be surprised, I don't fit the profile of an osteoporosis patient.
I, however, asked for a hormone level test (FSH-don't know more than that) since I had been on tamox for 1.5 years and had it checked a few months after I started that drug--and found I was menopausal. I went from pre-meno to post-meno via the wonder drugs of chemo. No peri-meno, anything. Anyway, I stayed on tamox for nearly a year, then had another FSH test, requested by ME, not my MO, and done through my gyno NP. Again, way into menopause. So I presented my MO with those results and she put me on arimidex.
I ran into my friend, colleague and breast cancer mentor on campus yesterday. We chatted and she asked me when I see my MO next. I said next month simply for a heart to heart about getting off arimidex and either trying femara or another , or stopping entirely. I told her about my side effects--wrist catching tendons/popping, joint aches, weight gain, insomnia, mood changes--and she said she was on it and didn't have one side effect!
It infuriates me when I hear that, but I understand again how different this damned drug is for everyone. I've tried to embrace it and see it as my defense, as a good thing--but knowing that I'll have to be on it for such a long time feels pretty defeating. With my status rx is 10 years--or maybe for life depending on research! I can't even wrap my mind around that thought. Anyway.
Enough for now. I'm headed to bikram yoga--heat and humidity and building muscle. Can't hurt, right?
Love/hugs/C
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Just take it one day at a time. The studies aren't even done yet as to whether or not 10 years should be recommended.....doctors who are saying '10 years' are doing it on a hunch, not scientific evidence (at this point). The farther out you get, the less chance of recurrence, so if you can manage even a couple years, that would be good. And/or if your body handled Tamoxifen better, maybe you should go back on it.
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I just caught up several pages and I wanted to weigh in that I have no weight gain either. I have to be vigilant but I always had to be vigilant. I have changed my eating style though. I try to follow a Paleo type eating plan 80/20, which results in way less carbs and sugar. I do have aches and pains, but I had those during chemo so I can't tell which is which. And I also have a trigger thumb which I do attribute to the drug and a bad mouse at work, and maybe playing candy crush on my phone! When I got rid of the mouse and used a heating pad several evenings, the pain went away but my thumb doesn't exactly bend the same way. If I was a dental hygienist, I would bring it up to all my doctors since it is your paycheck, but also be careful with any repetitive motion outside of work, like texting, laptopping, etc.
Claire, good luck with your decision. I'm not sure if it would make a difference or not, but you can also get the name brand drug for $30/month on their website if you wanted to try that.
Rwiley loved you comment about Ben & Jerry's. I gained 5 lbs one fall on buy one, get one free pumpkin pie ice cream. Turns out my family didn't like it but I did!
Being a recur-er, I have not even asked how long I'll be on the AI because I don't want to know the answer! I'm hoping there will be more definitive answers when I hit the 5 year mark. In the mean time, as Ruth says, one day at a time.
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Unfortunately the current research tends to report that ILC'rs like me tend to recur 10-15 years out, so a lengthy time on AI seems to be in my future...hopefully.
I have considered tamoxifen return, and I need to tell my MO to write the new script for TEVA and have Walgreens fill it. If that works better, great. If not, then Femara, if that doesn't work, then we'll discuss a tamox return.
So frustrating to read of no weight gain or even weight loss. I'm always hungry because I'm always working out and I'm on about 1200-1400 cals a day. I'm not even close to the overweight BMI mark, but seeing the scale creep up is frightening. Like my body is out of control no matter what I do. You'd think anyone would lose a few lbs, eating and exercising as I do.. but--nada. Shazbatt. If I worked out any more I'd be a professional athlete.
Claire
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Suladog My MO says that the ER/PR is important and considers me high risk for recurrance due to the size of my tumor. I was 30% ER and 5%PR
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I'm going into talk to my mo tomorrow specifically about this and whether I was tested for all 3 types of estrogen produced by the body. I have been in menopause since my late 30's due to chemo in 1990 for triple negative bc so I never went thru menopause , never took HRT even though my drs at the time told me it was ok for me.
My tumor this time was 7 mm and no nodes si very all but HER2+ my drs at Ucsf have said since I fid taxol and Herceptin I'm low risk since I had as they said very little disease they don't want to put me into "overkill" type treatment. I'm
Ok with doing arimidex as they told me they don't feel it's important for me to stay on it even 5 yrs. they've basically said they don't want to put me through too much considering what I've already done, and besides I'll be on herceptin til the end of next Jan. Interesting to see how this playsou
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I was about 1000% positive on both PR/ER, ha ha. I have been estrogen dominant for years--hence, the two myomectomies to remove fibroid tumors that I've had in the past, which are much more likely to occur in estrogen dominant women, and I also began my period early (for my generation)--at 11, which seems to indicate estrogen dominance as well.
But really, ILC is a different animal than IDC, hasn't been studied as long, and can be missed for years on both US and mammos. What a shock to have five clear "you're good to go" mammos and then find your tumor yourself in a random breast exam. Infuriating, actually.
It's hard understanding that I don't get a bit of a break from the worry of recurrence if I make it to 6 or 7 years, considering recurrence for ILCrs tends to happen later rather than sooner.
Claire
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Claire,
I didn't start my period til I was 14 so , so slow. I have a feeling I've always been low on the estrogen scale since my cancer in 90 was ER- and had trouble getting pregnant which was stopped totally by chemo. Anyway my drs don't expect me to have a bad time w/arimidex since I've been running more or less on empty for 25 yrs with no ill effects, and moderate osteopenia as my most recent density test shows. I was taken off fosamax 5 yrs ago. I'm small w/average bmi so they have said the drop for me on arimidex might very well hardly be noticeable to me. Here's hoping.
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ClaireinAZ, have you considered that maybe you aren't eating enough calories? For your activity level, your body might be going into starvation mode and hanging on to every one. I know there are a lot of variables, but I'm 5' 7" and my weight runs between 122 and 124. I eat a lot more calories--about 1,800 at a minimum. I exercise every day, usually a run (3 - 6 miles) or a bikeride (9 - 12 miles), walk my dog, some weight lifting and/or pilates, nothing excessive. I think you need more food!
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My MO ordered hormonal testing and a bone scan prior to my starting Arimidex, and I will have a bone scan every year that I am on this drug. It would be completely irresponsible for any onc to put someone on these drugs without these tests.
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I did not get hormonal testing other than my oncotype - maybe because I'm 69 and 25 years past menopause. He ordered a dexa scan for me and I'll have another in 2 or 3 years - I forget which. It showed a little osteopenia, thus the Fosamax.
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Peggy, yes I think that makes sense if you were that far past menopause. I am just a year past and 47 years old. I have just the start of osteopenia in my right hip--very minor. My MO wasn't concerned, but I am. I was surprised since I'm a runner, but I do have a small frame and I'm sure my alcohol consumption is a contributor :-( I will be eager to see what my first follow-up dexa looks like in December. I'm doing extra calcium, D-3, and of course ruthbru's prunes
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Meljo614, I wonder how long I've had the osteopenia but no way of knowing. I drank in college and then started up with a glass of wine at dinner several nights a week about 3 years ago so I doubt that's much of a factor. I don't do calcium or Ruth's prunes but I do do D-3. Makes you wonder what does and doesn't effect your bones, doesn't it?
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Claire,
it's similar to what I was dealing with back in 90, my mo said think of it as chronic no 5 yr limit for you. 25 yrs later I was back with another primary, so no surprise, but that big weight hanging all the time
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Thanks...actually 1200 cals is the requirement for RCS (Restricted Calorie Society)'s recommendation for losing weight and getting down to around 19-20 BMI. The Society practices this because they believe they'll live longer. There's a bunch of science behind it but I won't get into it. I've researched the starvation mode thing and it's actually not really proven, more of a story (like muscle weighs more than fat, which defies the laws of physics)...really, if you don't eat, you'll lose weight, unless you have some other crap going on physiologically. But thank you for trying to help. I am ready to scream because I've restricted, I've not restricted cals, I've done Paleo, vegan, vegetarian, stopped eating after 7 p.m., etc. etc. blah blah blah blah, and NADA.
I restricted cals in 2011 because of abject fear and worry as soon as I got the dx (I can't eat when I'm upset), and I lost 5 lbs.right away; within a month, 8 lbs. I semi-fasted (500 cals) the day before and the day of chemo since it is supposed to reduce side effects and actually help the chemo work better. Post chemo I was down 12 lbs from my starting pre-dx weight. I stayed there till I started on the arimidex, and boom, 14 lbs up now and rising slowly no matter what I do. It may have been the effexor--for hot flashes-- coupled with the armidex as well. I'm off effexor 37.5 mg and taking a low dose of wellbutrin instead. We'll see.
D*mn, I hate this drug. I can't embrace it.
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Hate it too.................I know I "m old, but guess what.......i was old 4 years ago too, and did not feel like this..............
Lousy friggin Arimidex........why did I even try it......should have know better...........it the Letrozole beat me up......what made me thing Arimidex would be any different........
Desperation causes you to try it.......if I could kick my own ass I would ...........once I stopped Letrozole I felt much better.....................but ..........NO.......I had to try another "devil pill"..........................which was worse them the previous..................
Now I can't get rid of the SE's even after stopping Arimidex...............WTH was I thinking.........
So angry with myself..........
Then to suggest trying Faslodex.................hell no...............I don't care if it does work for some people takingit.......................Arimidex works for some too.......................Not this lady........
They can keep them all....................
Maybe one day I will regret the choice I made...............but right now.............I'm hoping 3 1/2 years was 'enough...................
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Arimidex is already making my hip joints hurt. Who knows if it's aggravating my bone mets but they hurt. You can see from my signature I've been on it less than 1 month and this hip pain started maybe 1-2 weeks ago, so side effects have been almost immediate.
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ClairenA,
Did you switch to an AI because you became menopausal. If that's the case, the menopause may be the cause of your weight gain. Then again, some of it might be attributable to the AI and some to menopause. Then there's the gaining 5 pounds a year once past 40 regardless of maintaining exercise and same caloric intake.
Have you had your thyroid checked?
I am not on an AI yet - no periods since start of chemo, estradiol is menopausal, but FSH and LH levels are not even close. When the 3 decide to line up, then an AI. I continue to educate myself.😁
I run and walk and do other muscle building exercise - but I will go through periods when the scale will not move down for weeks and then voila it moves quickly.
Diana
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Meijo...........with Letrozole it took 3 months before I have even 1 SE..............and hat was trigger fingers............then I notied my hair thinning.........not horrible but it did thin.
Then my legs began to hurt and my hips and back..............I had some arthritis, lus being on a statin drug which can cause muscle and joint pain.............
So I know what pain felt like.......but when the Letrozole SE's finally kicked in...........WOW........It hit me like a ton of bricks............
Understand I could have taken a ton of "new meds" for pain, but for what.............to get a few more SEs.
What I think really knocked me for a loop was when I started to get dizzy, and my balance was horrible......I never had that in my life......and I"m no spring chicken, so its a long life........LOL
Then finally the Neuropathy in my feet.......that was when I said "screw it"
But I must say.....Arimidex was the real enemy.....just trie it to see if I could tolerate it............brutal, brutal, and off it for 1 months.......all SE's came back, after feeling so much better after stopping Letrozole.............
By far I think as bad as it is and now I can say "WAS" Letrozole is kinder to the body...........
Anyone reading this "Ask fo rthe TEVA brand"..............
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I picked up my RX today and it's manufactured by Pack Pharmaceuticals. I'm so scared to start taking this Anastrozole.
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Audry.............try it..........don't not, not take it............some have no problems,, some have few problems......some have many probelms.......but you have to try it........remember if it gets bad, you can always stop........
Then again, you might get lucky..........
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Duckyb1, I've been so lucky so far. IDC caught early, no lymph node involvement. Low oncotype so no chemo. BMX so no radiation. I'm just afraid my luck is going to run out. A silly way to think I know but even my MO is concerned about bone pain as I already have bad knees. Will have to see how it goes.
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Audrey, listen to Ducky. Try it. I've had no issues at all and I've been on anastrozole over 7 months. Don't assume you'll have SEs. Think positive and keep in mind the good that this drug is doing. That's what Ducky is saying. Try it! You and your MO might consider Fosamax or Prolia or some other bone protecting drug. Good luck!!!
HUGS!!
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Audry...my dx was almost yours, except I went for the Lump.........my tumor was 1.2cm......no node involvement, great margins, oncotype 8,........I did Rads....38 treatments .....had no problem..........
Breezed through everything without incident....could have gone out the day after surgery, could have drove, could have done anything I wanted......but of course Doc said no...........but that is how good I felt.
I too read about the SEs of Femara which scared the hell out of me.......could have heart problems....I already had a heart attack.....could cause joint pain.......already had that too.....but the girls here encouraged me to at least give it a try.............so I did..............and I was one of the unlucky ones...........but hung in there for 3 1/2 years.........but at least I tried...............as I said I took Letrozole (Femara)..........
My aches did get much worse.....but the heart was no problem..........
But you have to do this..............it would be a poor choice no to..........
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