Has Anyone Paused Their Breast Cancer Medication?

I had paused anastrozole for 3 weeks in December because my blood counts were off. They returned to normal in January but I went back on it because I want to stick with treatment. Had labs redone last week and my wbc plummeted to 2.5. Off again for 2 weeks to see if they rebound. I’ve heard of others taking breaks from the AIs as well because of side effects.

I was on Verzenio but stopped after a month. I was so tired all the time and kept falling asleep all the time even on the lowest dose. Now I only take Anestrozole

AIs cause such bad side effects for some. I have been on and off since August 2024. What I have learned is not everyone can do the same thing. The risk/benefit analysis is different for everyone. Do the new Predict test on line. My benefit is low for the drug use but I want to try. The first 3 months on Anastrozole were fine then ....I could barely move and could not remember where I had been all day...I exercise, do lots of vitamins, high protein diet. So off 4 weeks then letrozole....same thing happens at 2 months so then I start 1 whole pill every other day and half pill every other day. That seems to be ok for now. Your oncologist is only going to tell you to go by the manufacturer directions because they have to. All you can do is research good information and make the best decision you can for yourself.

Cat, thank you for sharing your approach. I also take one whole Letrozole every other day and a half every other day. Still have joint pains but it’s less than before.

I am responding to Cat's comment because it is so important. I am going to copy and paste it in capital letters so everyone will read it. "WHAT I HAVE LEARNED IS THAT NOT EVERYONE CAN DO THE SAME THINGS". Please keep in mind that you may or may not experience the Same side effects as someone on the same drug. I always tell myself that I have a 50/50 chance of experiencing the same side effects as someone else on the drug.

It is true that everyone responds differently and I would hope that no one would base their own treatment on someone else’s experience. Rather talk to your team, be honest with them about your experiences and make an informed decision together.

This conversation was great! I’ve been on anastrozole for 6 years now( supposed to have been 5, but new test showed I’d benefit for longer), but I really want to stop. I’ve never taken a break, just deal with the side effects, but I’m 63 (64 next week), and I don’t believe these aches are just from age, but I feel it’s affecting my quality of life now. My oncologist and I did decide that a total of 7 years would be fine. Maybe taking one every other day and 1/2 on the other will help, but I’ll discuss next time I see him which is in July! Still a long way off, but I’ve come this far!

Letrozole made me suicidal so….

I did alot of research before I started an AI. Almost every symptom is from estrogen deficiency/ menopause. If can be helpful to find a really complete list of estrogen deficiency symptoms so if you are not feeling well when on the medication you can look at that list. Most doctors aren't going to give you a list like that. You have to do things to help your brain,bones and heart when on these meds. I only had 2 mild symptoms when peri menopause but I eventually started bioidentical estrogen every other day because I knew how important it is for a women's heath. I was only on that for 4 years before I had breast cancer. Think of estrogen as your body's lubricant, everything in your body is drying up on AI. So do the things you need to to lubricant your body in other ways inside and out.....hydration/ moisturizer for all parts skin,hair,eyes,ears,vagina. Eat foods that are good for your heart and arteries. Blessings and strenghth to each of you.

I stopped my Letrozole last Tuesday. I’d been on it since August after previously being on Anastrozole. The side effects seem to accelerate after 6 months of use on me 😩. I was gaining weight, not sleeping, loosing hair and had mood swings and brain fog. I’m going on a bucket list cruise next week and just wanted to maybe feel a little more normal. I will see my oncology staff when I get back.

Yes, I do find the side effects are lightly discussed by doctors. I struggled from day one on Arimidex, joint pain, especially thumbs & wrist joints, could barely pick up a cup of tea. No arthritis just side effect. Insomnia was wicked, hot flashes & night sweats did not help. Tried two different supplements recommended by oncologist that helped slightly. Then I proceeded with acupuncture which helps but not a fix, plus cost prohibitive. My oncologist insisted I give it a year and sometimes your body adjusts! My acupuncturist recommended Embr Wave, a bracelet that helps squelch hot flashes. That does help but again no problem solved. Now that it’s been 1 year, I’m on a 3 week break from Arimidex, but then I need to start Extremestane. Another hormone blocker, fingers crossed that is more tolerable. I will say this little break is heavenly! The joint pains cleared right away, I’m sleeping better, however I can’t shake the hot flashes completely yet. Perhaps that takes a bit longer. I do feel much more alert, have more energy & stamina. As you ladies have commented, we all have different issues & tolerances. Keep positive & speak honestly with your medical teams. We can only get through this together! Hugs to you all on this important journey!

Lee, thank you for sharing your experience and journey. To say this journey is a challenge is an understatement. It sounds like you have a supportive team which is a blessing. Marita

Is anyone taking Letrozole & have restless legs syndrome? And it makes it so much worse? It kept waking me up at night. After I stopped the Letrozole, it quit waking me up!

It can cause joint and muscle pain which could cause restless leg type symptoms. Make sure you hydrate well,have enough vitamins such as D, Calcium, Folate,Magnesium, potassium. I know alot of people taking different doses. I know one person that I work with that spread her dose out 36 hours apart to be able to take it. I take 1 whole dose on even days and half dose on odd days. Keep in mind that my tumor was tiny, I made a decision to do that based on several pieces of medical information. Also I understand alot about the phamacologics of the med. I can't use my right hand to do my job or walk safely if I take a whole dose everyday. I'm continuously trying to increase what I take,then I have to back off again.Powerful med...

Many people in this community have faced similar decisions about pausing their medications due to challenging side effects like joint stiffness and other complications. This is definitely something worth discussing thoroughly with your oncology team, especially with your upcoming appointment and blood work scheduled - they'll be able to help evaluate the best path forward based on your specific situation and treatment goals.