For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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hello lago,
I too am in Chicago - glad to hear that your switch between AIs went well - I asked about other AIs, but my docs didn't seem to pick up on that as an option for me, it's always been, "you could go back to tam". I think they are really concerned now about my bones/teeth, and not just for today, but long-term. A year ago they said, "do you think you can tough it out?" - but now it's, "it makes no sense for you to continue to tough it out", given that there's the tamoxifen option, which they all seem to think would be ok for my circumstances. Let's hope!
It does help me to hear, first-hand, about the range of people's experiences (including those with no SE - you lucky folks!) - and especially what happened when someone made the switch from AI to tam. It is just good to know that others have gone this route!
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I'm new here, too. I was on Tamoxifen -40 mg / day but no SE -- but my new MO felt that was too much and I should be on anastrozole. So, I'm making the switch tomorrow morning. I'll read some of the advice from past pages, but if you have any pearls of wisdom forming as you read this, please share!
HappyHammer - Guess we're making this switch together. Yikes about your SEs of tired legs. I hope theI SEs settle down for you.
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Hi Sloan! I think the best advice is to just take it at whatever time of day works for you. I take mine at night because it tends to make me sleepy. Others have insomnia. Keep moving like you already do. I have found the incentive from my fitbit group has worked to alleviate some of the stiffness and ill feeling I had.
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Daisylover, I talked to my dentist about potential tooth damage and she said that it should not affect the teeth unless you have bone loss. She like my MO said I should be taking 500 Mg of Calcium and a minimum of 2000 mg of Vitamin D3 depending on my vitamin D levels.
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Hi Sloan , Peggy and Molly from the LL- and, the new sisterfriends- glad we are here together and am hoping my body will acclimate....also, know moving helps- Fitbit group is awesome- and am getting together with some YMCA buds tomorrow to map out a plan for at least 2 or 3 days a week meeting to get in our steps or yoga....I know that will help! While I lost 40 lbs ( a silver lining) during chemo and rads- have put on about 12 in past 3 weeks....could it be the Arimidex? Going full scale "clean" eating tomorrow...and, getting a facial and massage this weekend to combat the muscle pain. Any suggestions- please feel free to let me know!
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HH, anything is possible. I would think that getting past chemo is adding to it - your body returning to normal. But that seems like a lot of weight in a short period of time - to me at least. Does the weight feel good or bad to you?
HUGS!
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Thank you. The nauseous seems to have past. I went to see my oncologist and she was disappointed that I did not complain of joint pain, vaginal dryness or thinner hair. Then she said "well you've only been on it for a month." My reply was "why do you want to see all these side effects" and her comment was "to see if the pill is working." LOL So now I get to look forward to having at least some of the side effects so my oncologist will be happy. The things we do.
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Thanks Molly. I'm not sure when I should take it because here I am awake right now in the middle of the night, and I don't even start the anestrozole until tomorrow! I noticed in earlier pages that you said you had tired legs, too. Has that settled down?
Happy Hammer- Good luck on your "cleaning" tomorrow. Haha. Let's stay extra focused on Fitbit steps so we don't gain weight on this med!
Peggy - Once again you are the calm one who gives me hope for no SE's!
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Sloan, thank you. I take my anastrozole in the morning because when I started reading this thread 1-1/2 years ago someone said it could keep you awake and I didn't want that. That being said, NOTHING keeps me awake if I'm sleepy. Play around with the time.
I also hope you have no SEs. Many of us do not and most of us don't post here since we don't need help. The SEs are real. And hopefully those with SEs can find some help here. RuthBru posted her recipe for drunken raisins and said they helped her SEs. I posted it a couple weeks ago. PM me if you want it.
Good luck, Sloan!!
HUGS!
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KateMom, I'm not a fan of your MO's remark that you have to have SEs to know the anastrozole is working. Guess, according to him, mine isn't working. Sometimes the SEs lessen as your body gets used to having no estrogen. I hope that's the case for you.
HUGS!
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Sloan, the tired legs and exhausted feeling seem better since I started pushing harder with walking stairs everywhere I go. I hope it continues because I was breathless walking up the Disney Hall garage stairs. I noticed yesterday I wasn't out of breath. The vaginal atrophy is better since I started using Gynatrof from Canada. There is a new recommendation from American College of Gynecologists that women on antihormonals can use vaginal estrogen if nothing else works. It's not supposed to be systemic. My MO is dead set against it.
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brutersmom.....our history is very similar. even tho my VIT D levels were normal recently, keep In mind that with our recent diagnosis and tx, those levels will nose dive very shortly. stay ahead of the game knowing what is coming. I take a caltrate 600 everyday and we decided to double the D3. 4000 iu per day. again we know that we will lose quickly in the coming months, be proactive to keep it from slipping away. once gone, we can't get it back.
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Katemom, I hope that MO is wrong! I've been on Anastrozole for nearly 6 weeks now without any SE's. I was really scared to start it from all of the women having severe SE's, but there were people like Peggy saying she had none which gave me a little hope.
I have a theory about why I'm not experiencing any SEs, mind you I could be totally off base on this. One, I never had frequent or bad hot flashes when going through menopause. Two, it's been 7years since menopause for me. Three, I maintain a low BMI of 20, so there isn't much fat to store estrogen in. Four, I workout four days a week for about an hour to keep muscles and hart in shape.
I believe we all should be exercising for the rest of our lives. It has been shown to reduce your cancer risk for recurrence no matter what size or weight you maintain
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hbbae when I was having trouble with Anastrozole I talked to my MO about Tamoxifen. She said it was better than nothing (she really doesn't like the drug) and wanted me to do the Exemestane. Glad I did. I do have osteoporosis now but I am getting that treated too. No problems with teeth. Are you in the city? I live in Lincoln Park
Hi Sloan
Suz-Q I didn't have SE till 3 months after starting. But never bad hot flashes, even on chemo when I went through chemopause. I too was thin. But the SE gradually happened. That's why I was on it for 3 years till I made the switch to Exemestane
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The only SE that I seem to be having is thinning hair & my PCP doesn't think it's from anastrozole. But I know that the drug is working as it has taken me to stable after tamoxifen failed after 5 years. No SE's doesn't necessarily mean it's not working. GG
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Hi Lago, I know that I'm not out of the woods yet! I'm hoping by 6 months nothing will change and then I can feel confident that the SE's won't come. I'm glad that you found another AI that doesn't cause problems. Peggy gives me confidence that Anastrozole doesn't cause everyone SE's and you give me confidence that if it does I have other options to switch to. Why doesn't your MO like Tamoxifen? My MO wanted to put me on it, but I wanted the AI.
GG27 glad to know that it's working even without SE's!! Good luck to you!!!! I'm betting the hair thinning is a SE of the Arimidex. It is a known and listed SE.
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lago, I'm not too far away from you, I'm in the South Loop - maybe we should get coffee someday
not sure why my docs weren't suggesting that I try out the other AIs - I think they felt it was likely that the SE profiles would be more or less the same for me. Maybe we should have done more experimentation across the different AIs - ? But the bone density issues (including the teeth) seem to have caught their attention, and I think that's why they suggested tamoxifen (that, and I had such an uneventful course of treatment with it earlier.) The consensus (among my 4 closest docs) was that the added benefit from anastrozole, as compared to tamoxifen, was (for me) minuscule, as compared with concerns about my bone density not just today, but 10-20 years out.
I won't be making the switch from AI to tam until I finish the anastrozole meds that I have on hand (probably not before late March/early April) - so I thought I'd use this time to query others about their experiences with such a switch.
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I am a five-year survivor following a double masty, chemo, and rads. I've been on Femara, Anastrozole, Letrozole, and now Aimidex. I'm now experiencing veriigo (spinning and dizziness). Is anyone else going through this SE and what can we do about it?
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Welcome DukeMom. Sorry you are having vertigo. I take it you have switched meds so many times due to SE's? Have they considered Tamoxifen for you? Have you told your onc about the vertigo?
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I got home today and found a package from CVS (Express Scripts) Pharmacy. In it contained three 30 tablet bottles of Anastrozole from TEVA. This company is amazing since last week they told me it was no longer available. On the label it says TEVA brand only. So I guess I am good. I am taking Letrozole right now because the Dr office was told that TEVA is not available. I guess they had to order it special for me. I don't seem to mind Letrozole. Not having side effects like I did on the anastrozole Accord brand. When I was on Pack brand I didn't seem experience any side effects. I guess I will just finish out the Letrozole and then switch back to Anastrozole. Hopefully no problems with the Teva brand or I will go back to Letrozole I feel more tired and achy on Letrozole but not like I did on the Accord brand of Anastrozole which gave me muscle pain, leg and foot cramping, fatigue and sent me to a very dark place.
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I do not have a lot of SE, I have some aches when I first get up or if I have been sitting on a hard chair. They are very doable. I have no trouble sleeping because I am exhausted...but that is also from teaching 20 6th graders with behavior challenges....most of which are ADHD, most not medicated, 2 that need to be escorted so I log between 10,000 and 12,000 steps. I have tomorrow off for oncology appointments and mammogram. It has been a year since this hell began. Now I find I scared out of my head about tomorrow, I do not want to do this again.
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Tjh, it is hard - that first mammo post-dx and tx. You'll do fine. We all worry - how can we not? I'll be in your pocket tomorrow!
HUGS!
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tjh, Try not to worry. If you are doing well and keeping up with all those kids, you will be fine! We started chemo together and I remember when you went back to work.
I see my oncologist every 3 months. Do you?
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Every 3 months..this is the first mammogram.
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TJH- In your pocket tomorrow!!! Hope you have big pockets...I hear Peggy can bust a move!
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Duke Mom get that spinning checked out ASAP . that is not sounding good.
Im here to find out if I can do anything about side effects. I read a study on Fish Oil, forJoint pain. I added that to my daily pill regimen, also added Flax. And a calcium chew-able. I have been on Arimidex for over 2 months and I am feeling joint pain and stiffness and some bone pain. Amazing I even know what bone pain is... I had the pleasure of getting bone pain with my 1st dose of Taxotere. The stiffness and joint pain are worst Sideeffect I have, I able to deal with hot flash and sweats, they do not bother me, it the pain. Bad thing is I am stuck at home. I work from home and I have been told to stay home with the flu raging on in Ohio. So It limits my ability to exersize. My other issue is my immune system is shot. Since October I've had Pneumonia, Bronchitis, Mastitis, Sinusitis and laryngitis infections.
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HH, I "pretend" to dance. I'm lousy
HUGS!
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Peggy- haha...am thinking we all have our place in the pocket.....as I said a LONG time ago...when I was so scared and vulnerable....YOU said you would be in my pocket....I cried....and, felt so much more centered knowing there were others you, and many others- who understood....and, stood there for me......thank you for that and for helping me to know how to stand in for our sisterfriends. Thank you.
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Hi everyone, i am on anastrozole (for 1 year today. Whoo-hoo) and also have minimal side-effects. Ive been working out a lot more so i am more stiff and sore but don't know if its associated with the drug, more exercise, or my preexisting autoimmune disorder. But all manageable so far.
So just wanted to say to Sloan, you can do this and to any others who are starting.
I also did not like that Onc's comments about side-effects mean its working. Hmmm. I'd like to get my onc's opinion on that.
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HappyHammer, I can't make your mind turn off - I haven't figured that one out in 70 years so suspect I won't solve it. But I can be beside you, and hold you and tell you that it's okay. Take your Ativan - it sounds like a good answer for tonight. Wouldn't it be nice if there were an off switch for our brains? I find that some nights, there is absolutely nothing I can do except get up and read. And fall asleep in my chair. Somehow that is different than bed and the mind will shut off.
I'm glad I've been able to help you. it's a scary journey, especially at the beginning when you don't know anything. And it IS nice to have people to talk to who "get" you. You don't have to explain.
Hope you sleep well.
HUGS!
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