Quitting Arimidex after 10 weeks

Twelvestring60

Hello everyone. New to the site and have been in the crazytown forum. Is there anything you can do to prepare for the drug exemestane? Had bone density test that said "osteopenia" another new word. Hehe would like to be tolerant as possible of drug!

Starting chemo in 2 weeks, don't know if you take the exemestane at same time. I guess I will learn this in chemo class even though its not chemo? Didn't know here was a class...

Everyone here is strong..

Thanks,

Dorene

Diagnosed 12/19/18 58 years young. Double masectomy (family history recurrance in cousins other breast 1.2 years later helped decision of this )

Multifocal IDC Left breast stage 1a, grade 2, 2cm tumor, 1 tumor Dcis super small i forgot size, 4 nodes removed, negative. Her2 negative, er positive pr positive.

oncotype 30. 6 family members with breast cancer.

I have to learn how to put diagnosis in! Sorry peeps!

Runrcrb

twelvestring60, sorry you are here. I didn’t start an AI until after I’d finished chemo and radiation so I’m predicting you have some time. Try not to worry too much. In this thread you’ll see that not everyone has side effects and if you do and they are too tough to handle often switching to another AI works. Arimidex was hard for me but aromasin (exemestane) has been fine. All the best as you go through chemo- that too varies for each of us. Although I lost my hair I had few issues as there is a lot your oncologist can do to help you.

All the best to you

CBK

Hi Runbrc

I’m on a week vacation from Arimidex to see if I catch a break with side effects.

Can you share your experience with both ALS? And are you keeping your hair on Aromasin?

I heard Aromasin has a steroid component. I don’t think I can tolerate that since I’m super sensitive to them. Like my MO could not believe I tolerated chemo with the super low dose she had to put me on. Ha!! And I was still wired.

Runrcrb

CBK - no trouble with hair. Have a full head of it, still sporting chemo curls.

sdianel

apatient: I feel your pain. I had lumpectomy 2 years ago with 5 day accelerated radiation. Terrible side effects from radiation for months made me too sick to take the AI. Finally started the AI Anastrazole (Arimidex) January 2018. I read about side effects and am very susceptible to medication side effects so based on recommendations from this forum, I started taking 1 every other day in the morning. Immediately felt terrible. Like 100 years old. Also read that taking it at night immediately before bed might help. It did. I finally was able to stay on them for 6 months until I had other health problems and had to stop due to nausea. I just started back on the AI 2 weeks ago and every bone in my body hurts, I feel 100 years old again, I'm having intestine issues, and I'm not sleeping. I forgot that I should start slow and take one every other day to get used to them, but am taking it at night right before bed. Now I'm trying to decide if I should go off them and start over or stop them all together. I will talk to my Onc. to see what she says. I do not want to take Tamoxifen. My Mom took it and it caused blood clots. Maybe I'll try the Aromasin? I know I need to take the AI but I can't live like this. Such a difficult decision. Please keep us posted on what happens. Diane

Runrcrb

Sdaniel - for me the difference between arimidex and aromasin was night and day. Talk to your oncologist about switching- it cannot be worse than what you are experiencing would arimidex.

CBK

Runrcrb

Yayyy still have beautiful hair AND chemocurls!!

What side effects improved for you?

I was told femora and arimidex similar in composition and switching from one to another probably won’t make a huge difference. Not sure if that’s accurate but it did come from a cancer DR that deals with pain issues related to cancer treatment.

Runrcrb

CBK - yes, arimidex and femara work the same way while aromasin works in a different way. Still not sure that one would experience the same side effects on arimidex and femara as we’ve seen many women confirm that changing the manufacturer of their AI changes side effects.

When I was on arimidex I was so fatigued I was sure my thyroid had quit. I’m the only woman in my family (mother, two sisters) with a normally functioning thyroid. I had all the tests and saw an endocrinologist- all normal. And I realized the fatigue kicked in about the same time I started arimidex. Took two weeks off and then started aromasin- no issues. I had hot flashes, pretty serious ones, immediately after my cancer diagnosis (had to stop hormone replacement) which continued for a good long while. Effexor didn’t make noticeable difference. I have found that with time the hot flashes have lessened in both frequency and severity. Sugar (wine) usually guarantees one but I’m not giving that up

CBK

Runrbrc

Thanks for that information and so good for you to have found Aromasin tolerable.

I got make a move here to something. My side effects are off the charts and I’ve been fighting on Arimidex over a year. Course the ooph I don’t think helped either, but I see a few ladies are AOK having the ooph premenopausal and going on their ALS Ok. My new MO did gasp at that scenario when I blurted it out at my appointment with him. Ha. Who knew my male oncologist would be more understanding on this issue than my previous female one? 🤣

Thanks Run!!

Gussy

I have been on anastrozole for about 9 months and had minor side effects. Now, I'm short of breath and achy, fatigued. The shortness of breath bothers me the most as I developed Afib while on chemo and have been on heart drugs for over a year so in normal sinus rhythm. The SOB is very annoying. I just want to finally feel normal for a change . Has anyone experienced these things on the drug?

Meow13

I developed ringing in my right ear, the whole side of my face was bothered by it. The pressure on sinuses was annoying, still have that problem. I had very sore joints so I switched from anastrozole to exemestane what a nightmare. Puffy face, weight gain and severe dry eye. Well that resolved itself when I got off exemestane. Not on anything now, much much better.

azmonsoon

I too had TERRIBLE side effects from Arimidex. Historically, I was super sensitive to side effects from birth control, so I had some concerns, but I went into it optimistically. I tried everything to be successful: time of day, name brand, skipping days, etc. This is how I described how I felt to my husband: Imagine the worst hangover of your life then multiply it by 100, add in a neverending vomit-inducing migraine, a body that aches so much you feel like your joints have rusted, a brain that feels like you are being held underwater, a mood that feels like you've been wrapped in a hot, heavy, scratchy wool blanket and been dropped in a dark whole on a hot day, and then finally, add exhaustion from the inability to ever stay asleep. #goodtimes

I tried to gut it out, but after about 90 days my MO encouraged me to discontinue for a week or two to recover and feel better before switching to Aromasin. I took three weeks off because it was so great. I was excited because I felt good; almost like my pre-cancer self. I was really dreading starting Aromasin, even considered just not taking any AIs, but was more scared of that. I'm happy to say that after a couple weeks I feel pretty good. Amazingly good compared to the arimidex. Night and day better. I was joyfully side effect free for two full weeks. Now I'm seeing a couple of things: not being able to stay asleep, a headache now and then, some stiffness when I wake that goes away during the day, and a slight downturn in mood. But this is manageable.

After the nightmare of Arimidex I thought there was no way I could successfully take an AI. I didn't think there could be that much difference between the two. I would recommend that you at least give the Aromasin a try. Maybe give you self a time limit to see if it works.

Enjoy your six week vacation!

Moderators

Hi azmonsoon, and welcome to Breastcancer.org!

Thank you for sharing your experiences with AIs -- we know what you and others have experienced is common, so it's always helpful to hear from others who can relate.

Thanks for posting and we look forward to hearing more from you soon!

--The Mods