For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Gardengypsy, Letrozole is the generic for Femara, where Anastrozole is generic for Arimidex, both are in the class of AI drugs.
Falconer, if I can tolerate drugs/SEs, the plan is to be on Zolodex/AI for 5 years.
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Falconer one of the issues being on lupron or zoladex is its hard to tell if you are in menopause or not. If you are not in menopause, its not good to be on the AIs without ovarian suppression. So at your age the options are to stay on the full five years or at some point switch you to tamoxifen and test your hormone levels after a few months. I am in year four
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Thanks for the helpful info. I am amazed that you are in year four of Zola, TwoHobbies. For the last week I keep asking the same thing on the BCO site bc it just seems inconceivable that this is going to be the "norm" for me. I know you've all been here too. Wildtulip- I do so appreciate your headline, quoting Ms Bareilles. Ain't it the truth
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It is a big deal to you and that is all that matters
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Twohobbies, what is your plan at 5 years? (If there is one.)
I have heard some ladies that were tested after being put into chemopause and allowed to be on AI's without OS (after testing), but my MO is adamant that treatment is directed by menopausal statues at time of Dx.
Falconer, I know what your saying..I was on tamox for 3 months and then had to switch MO's. New MO proposed the Zolodex/AI and it felt discouraging and overwhelming to think that I would have to go in for a shot every month for 5 years. After a while I just accepted that it is what I need to do to have the best odds to keep the beast at bay. However, I am very fortunate to live only 10 minutes from my cancer center and makes it very do-able. And yes, I love the song, "She used to be mine." I feel like I have one foot in the past, and one in the future. I don't want to lose the old me, but can't deny that I have changed through this experience, so I'm trying to figure out who I am now.
Random question for anyone..I've heard people say they are, for example, X years out or X years NED. Do you use your Dx date, or BMX/MX date, or something else. I guess I'm just curious.
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Wildtulip, I am a little more complex. I recurred on tamoxifen at age 52 and was still having regular periods. Chemo stopped my periods but I had one the week before my first chemo. They also measured FSH and LH after chemo and no indication of menopause. In my case it would not feel safe to use tamoxifen while they wait to see how my hormone levels recover off the ovarian suppression. My mom hit menopause in her late 50s so the MO felt I should do another year even though I will turn 56 this year. I think your MO is wise. I have heard of women suddenly getting a period a year later after chemopause. When I was on tamoxifen, my breast surgeon said two years without a period would safely indicate menopause.
I think I looked up how Doctors refer to the years NED and I believe it was from surgery date. However your five years of treatment will run from the first date you took your pill.
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Hi All, I started Anastrozole 11/19 and started seeing one spot of pimple rash on my right rib. I'm thinking of taking it six days a week but skip on Wednesday. Would there be a problem with this? Any suggestions?
I'm also taking vitamin D3 5000, and Calcium 600-800 mg but I heard too much Calcium can cause kidney stone, so don't want to increase.
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Twohobbies, Thank you for your input on NED and hormone treatment dates. I appreciate it! Best wishes with your health!!
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Houston see a dermatologist. May not related. Most can tolerate 1200 calcium daily. Check with your MO. Have you had kidney stones previously?
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so like Imkopy2, apparently i may not actually be in meno right now.
since chemo in 2013, and starting tamoxifen, i only had the occasional insane period.
Was off tam for surgery in August, then went off again in November for another surgery and my liver started having issues due to tam. They decided to put me on the AI, went in, had a full meno panel done, gyn exam, etc that said i was, started taking arimidex, had one 9 day cycle last month, having another right now.....
So MO says to stop taking it immediately and see gyn again.. MO is perplexed and I sure as s**t am.
i'm only 41. This is really frustrating and confusing.
Not terribly sad about stopping it as this weekend the severe joint pain and leg cramps showed up, but, i don't like flying without a net.
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jwoo- what are you seeing the gyn for?
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jwoo- will gyn test your hormone levels? I don't understand completely- can't the MO do that for you
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My MO told me that because of my age and that I was probably already perimenopausal, chemo would induce menopause. He ran a hormone panel on the blood drawn before my last infusion that showed post menopause levels. I didn't start hormone therapy until a couple weeks after my last radiation session so I had plenty of time to come out of chemopause, which I didn't.
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I would really like some input from any of you who have experienced fatigue. I have been on anastrozole for about 16 months I have been experiencing extreme fatigue the last couple of months. By 3 or 4 in the afternoon I am tired and my brain feels foggy. I have no other side effects. I push through for work but it is taking its toll on me. By the time I get home I am to exhausted to do much of anything. I am a Realtor. I love what I do, but I am having trouble doing it. I have 2 more years until I can retire. I sleep on a good night about 5-6 hours. (Happens occasionally when I am totally exhausted) Most nights I wake up two or three times a night. Some nights my mind just races. I feel exhausted all the time. I talked to my MO in August when the sleep issue started and he suggest Melatonin. I was already taking that and I told him. He did not offer much help but it wasn't as bad then. I don't have trouble falling asleep. I cannot stay asleep. I take the drug in the morning. If I take it at night, I sleep an hour or two and them I am up all night.
I am beginning to feel desperate. I don't have the energy to do the things that I enjoy. I want to stay on the drug to help keep reduce my risk of cancer returning but I feel like I need my life back.
Any suggestions. I see my MO on Monday and I find that if I go in educated I get better responses.
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brutersmom. I have been on all 3 and have problems with them all. the least amt of SE is the Femara. it's the one that I take at night and sleep slightly better than the other 2. as you know, it's different for everyone. i also found that it was way better on the TEVA brand of Femara. my legs hurt 24/7 and i have trochanter bursitis both left and right. hate to say this, but it is what it is.......for me personally, it was finding the path of least of resistance. they all stink.....but what stinks more is recurrent Breast Cancer........
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Thanks bjb01. I was on Femara for about a month in the beginning. The side effects were horrible for me. I do take the Teva brand of Anastrozole.
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Brutersmom-when I read your post, it was as if I had written it. I have been on Anastrozole for one year and have had these sleep issues almost from the start. I have mentioned it to my RO, MO and my PCP. I did not want to use a sleeping pill, so they all advised that I take a Benadryl each night. It really, really helps and it's cheap if you just get a generic type. It doesn't leave me feeling sluggish the next morning and they all agreed that it was a safe thing to take for these kind ofsleep issues. You may want to mention it to your MO and see what he thinks about it.
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Falconer-
My MO did that already, and I had a full work up and exam by my gyn before starting ari. I have no idea what will be done next as far as tests go. Hence the confusion and upset on my end.
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JWoo- so sorry you're in this situation and I hope that you find answers soon. Thank you for sharing your story here, as it helps all of us who are on this path.
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Brutersmom,
On anastrozole, I had difficulties sleeping, this already on top of chronic sleep problems. When my MO switched me to exemestane/Aromasin, I slept beautifully for the first time in ages. I still have to take melatonin and carry out good pre-sleep habits by limiting blue light exposure, food, caffeine, alcohol, agitating thoughts, but I'm sleeping better than I have in years. It might be worth switching to exemestane.
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Brutersmom,
For me, fatigue and the sleep problems are actually two separate problems. I have never completely gotten my old stamina back after all my treatments. Every evening around 7, an overwhelming fatigue comes over me. This is an improvement - used to hit me around 4 pm or so. I also will have an occasional day where the fatigue hits me hard all day. Thankfully, those days have really dwindled.
The feeling of fatigue doesn't seem to play into my sleeping patterns. Some nights I can't fall asleep, some nights I fall asleep and wake around 2-3 am and some nights I sleep long and hard. No rhyme or reason to it. But if the sleepless nights last more than one or two nights, like Biscuits, I take a benadryl. It gives me a great night's sleep and seems to break the sleepless pattern.
Don't think I can blame the anastrozole alone since the problems have been going on for so long. For you, maybe a switch to a different AI would be a benefit or maybe try a sleeping aid first. Functioning well without sleep is almost impossible.
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Hi all-- I am taking Tamoxifen but may be swapped to an AI soon, hence me being on this thread. I have a friend who is on Armidex and is now experiencing the severe joint pain. She wants to know alternatives so I need advice. Can anyone postmeno take any of the AIs? And can someone tell me what brands of which AIs are available? I know there is Femara, Arimidex and Aromasin but does each have a generic as well as brand name? And are there multiple brand names for each? I have found great success with Teva Tamoxifen (which is now Mayne) and wondered if Teva makes all the different AIs as well. Also, I suggested that she up her Vit D and try turmeric. She walks an hour every day and does yoga. Any other suggestions? TIA.
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My MO had me start on Tamoxifen after chemo until we could see if I would stay postmenopausal. Two months after my blood work showed postmenopausal, I got my first period. I started OS/AI right after that. Unfortunately, there have been women who have been in chemopause for two years before their periods came back. There's no way to know when you are slowly coming out until you have a period. Your MO would really need to check your hormones every couple of months to be safe. Being on an AI without being postmenopausal gives you no benefit.
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lala this info may be helpful:
http://www.breastcancer.org/treatment/hormonal/aromatase_inhibitors
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Jwoo my heart goes out to you 💕 I'm surprised your doctors didn't want to remove your ovaries if they wanted to switch you to an AI. Please keep me posted & I will do the same, I meet with my MO Monday. Hang in there, prayers & hugs!
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Just back from my first "diagnostic" mammogram...6 months after L-MX and one year after last mammogram as I went through earlier procedures before the MX. At the time of the MX, my DCIS was "almost gone" -- and my BS said it was probably due to the taking of Arimedix for 3 months before the surgery...just had a clear R Breast mammogram. While I find the aches and pains of now being 55 hard to separate from the aches and pains of the drug...happy to have the aches and pains if I can forestall any more surgery.
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WebMD is a good place to start, but cannot depend on the partial (and usually most positive) info given on WebMD, a commercial media source.
We can learn to go to the original, primary article to see full conclusion and caveats (limits of the study and how it compares with other studies). For example, the benefits of Arimidex (like 40% lower recurrence) are given compared to tamoxifen, a relative figure that does not give the full picture. We need to know a) the absolute % benefit and b) how that absolute benefit differs with early vs. later stages, Her2 status (+ or -), age, etc., major factors in risk of recurrence.
Older women with early stage bc, Her2-, and such, that is low risk for recurrence may get a few % points of benefit with aromatase inhibitors and their recurrences are at low risk for being metastatic (and thus more threatening). All these factors should be taken in to account.
Why isn't that information part of the standard knowledge given to us about any treatment? breastcancer.org's info on drugs does not seem to include % at risk from each side effect, or how these factors may affect the risk of side/adverse effects (maybe I am missing that info on this site?).
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TrmTb- are you saying that the AI eliminated most of the existing DCIS? If that's what you're saying, I'm so glad to hear that! It is good to know the AI was doing what it was supposed to for you
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Yes, that is what I am saying...in as much as that is what the BS said to me...after my MX pathology came back he actually said "WOW, the Arimidex really worked, shrunk it back down!"
While this was "good" to hear, it was also a bit disconcerting to realize that I had just had a MX of a size D breast and only 2 slides of a 1250gram breast had any DCIS cells on them...seemed like a lot to give up at the time...
Now, if the little white pill can help me stay healthy on the other side, I am grateful.
TT
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Is itching a side effect of AI?
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