User Reviews for Exemestane to treat Breast Cancer
Also known as: Aromasin
Exemestane has an average rating of 4.8 out of 10 from a total of 68 ratings for the treatment of Breast Cancer. 25% of reviewers reported a positive experience, while 38% reported a negative experience.
“I've been on exemestane for 3 months now. I switched after having side effects from Arimidex. The Exemestane has been way worse. I'm crying as I read all the reviews that other users have experienced. I feel so alone. I'm a very active person. I've never felt so awful in my life. I can't explain it to anyone. My fingers and wrists are so sore and swollen. My hands fall asleep all night long. I wake up constantly. I think I'm so tired from not getting any sleep. I get out of bed in the morning and I can barely walk. I stand up from sitting down and everything hurts! Steps are the worst! I'm 43 and I feel 93!! I was an avid mountain biker and runner before this. It's so disheartening.”
Aromasin (exemestane): “I have had several discussions with my doctor regarding this drug. He refuses to take me off of this after experiencing extreme night sweats, urinary problems, bone and muscle aches, extreme swelling of hands and feet water retention and weight gain.. The benefits of this drug lowering the reoccurance of disease progression is 14%. I have been a 20 year survivor of metastatic breast cancer and do not understand why I'm still on this. Seriously considering stopping the use of this because the side effects of this drug are truly ruining my quality of life. For only a 14% benefit I don't see the point. The horrible symptoms of taking this drug are not worth it.”
“This drug is perhaps saving my life, but who knows - and at what cost? Right now I seriously question the value of treatment that has such violent side effects. I'm experiencing: bone pain, extreme hot flushes /cold shivers, chronic constipation, vaginal dryness and discomfort, cognitive impairment, inability to concentrate, insomnia, significant weight gain (18bs in 8 weeks), rapid aging, facial hair growth, irritability, depression (big surprise there). It really angers me to see the glib way doctors document their research on this drug, claiming it is 'well tolerated'. I'm sure there are exceptions but in my personal experience so far, every woman I have met who's taking it complains of similar symptoms.”
“Exemestane is the third drug I am trying. 1 month in, experiencing lightheadeness, heart palpitations, sore ankles & feet so far. I am discontinuing for now, side effects are rough. My breast cancer was a stage 1 non-aggressive, non lymph node involvement. Genetic testing showed no markers. Anyone else have these side effects?”
“I have to say I feel very lucky reading all these reviews. I have been on exemestane for just under 2 years. I started following 23 rounds of radiation after my lumpectomy. While is do have sore feet occasionally and some mild tiredness I feel pretty lucky compared to other people who have posted. I guess I just want people who are new to the drug to know that not everyone has terrible experiences with it. Yes, it does affect your libido as well but sometimes you just have to learn to make adjustments in what you want to do and what you can do. It has not completely got rid of my sex life but it has definitely made me appreciate the times I am up for it more. It does seem to be getting less of an issue the more I am on it but the trade off is rare occurrences of anxiety. I guess after losing more people than I care to count to cancer I am just lucky there are drugs like this to give us hope.”
Aromasin (exemestane): “I was actually a participant in the clinical trial for Aromasin in 2006. At that time I had Stage 2 Breast Cancer. I had a lumpectomy, radiation, and this drug. I took it for 4 years...I was miserable. The worst side effect was the pain in my joints, particularly my feet. I couldn’t walk around the block. I was diagnosed with Metastatic Breast Cancer in September. I have had radiation and am back on the dreaded Exemestane. In addition to some of the other side effects, I have very bad pain in my hip (when I sit). I also have numbness on the same side, along my waist. Has anyone else experienced this? I don’t want to quit but this is pretty miserable.”
“Exemestane is the third aromatase inhibitor I have tried, and although side-effects are fewer than with letrozole or anestrozole, they are still severe. I decided to make a serious effort to treat side-effects aggressively so I can continue exemestane. I have added omeprazole and simethicone to handle the digestive issues and have had good results. My oncologist prescribed Lasix for the swelling in my hands and feet, and that also helps significantly. I'm consulting a rheumatologist about the joint pain in my hands and feet. Hot flashes and night sweats can be addressed with gabapentin and/or Lyrica. I'm using gabapentin. Ask your oncologist or PCP for a prescription. If exemestane makes you cry all the time, don't hesitate to ask for an anti-depressant. Don't just sit there and be miserable, ladies! Hold your treating physicians responsible for dealing with your side-effects!! Just because you have cancer doesn't mean you're supposed to suffer unnecessarily.”
Frequently asked questions
- Which is better - Aromasin or Femara?
- Aromasin vs Femara - how do they compare?
- How long do you need to take Aromasin?
- Should you take Aromasin with food?
Aromasin (exemestane): “Had a lumpectomy for Stage I Advanced Breast Cancer followed by radiotherapy. Then was put on each of the aromatase inhibitors, letrozole and the other one. Basically I was unable to continue either after 10 days due to increasingly debilitating dizziness, nausea, crying, etc. Then put on tamoxifen, and I developed lymphodoema. So tamoxifen was discontinued but still have moderate lymphodoema. Then put on aromasin. Initially able to tolerate it but increasing light-headedness (four minor car accidents) and debilitating joint pain (everywhere), poor sleep somewhat countered with Lyrica. I had already been diagnosed with widespread arthritis in the joints and the pain with aromasin has been intolerable so discontinued, against medical advice.”
“I have been on exemestane for fifteen months and I don't have any side effects. I attribute my waking in the night to having to go to the bathroom if I drink tea. I attribute my joint pain in my hip to the fact that I had it before I started and I am getting older. I sometimes get a hot flash but it lasts for about 30 seconds. I do sometimes get tired but then again I am getting older and some days I am more tired than others. If this medication can keep me healthy then I would say that I have no side effects. I do take a calcium supplement and try to exercise most days. I am an otherwise healthy 66 year old woman who is thankful for this medication and the fact that my breast cancer was caught early.”
Aromasin (exemestane): “I was on Arimidex for 6 months and started having neuropathy in hands and feet. Doc changed me to Aromasin and I still have the neuropathy which has altered my quality of life. Had no side effects from Tamoxifen other than weight gain and hot flashes. The Aromasin has also caused overall weakness and balance issues. I have been off of it for 2 weeks and still have the neuropathy and weakness. I am waiting to make sure it is from the Aromasin and then deciding what to do. I am quite certain I will not go back on the medication.”
“I have been on exemestane for a year and 6 months. My joints , especially ankles and knees are hurting me!! So much pain. My oncologist suggested to change company (with the same substance) but the pain continues! I really don't know what to do. I had very strong legs until last year. Unfortunately now I can't walk easily and feel much pain while standing ....even at sleep.”
“Stage 3 infiltrating ductal carcinoma breast cancer survivor twice over 20 years (single mastectomy). I’ve already had high dose chemo & radiation treatments. They also found a brain tumor in 2018. Turning 60 next month, I need to take an estrogen prohibitor and exemestane aka Aromasin is my 3rd AI to try! After 3 months on this drug I’ve had hot flashes, watery eyes, bad foot pain, headaches, falling asleep in the afternoon at work, but the worst for me has been hip/joint pain I never had before. My primary care doctor gave me a cortisone shot in the hip for the pain. He thinks it’s bursitis? (I’m going to try taking high dose vitamin D 50,000 units per week for joint pain someone else suggested in here). Not sure if I can do my time of 5 years on this drug, but oncologist said if I want 10 more years I should try. Comes down to quality of life vs duration of life? I’m running out of options!”
“After 2 years I finally realized why my elbow joints were in such pain. I was also waking up frequently throughout the night, but then would fall asleep at 6 am, and not want to get out of bed. By 10 or 11 am, I would force myself to get up! And I couldn't even think about exercising or taking my walks. My onc. took me off for a month to see how I feel, and after 3 weeks, the difference is remarkable. I'm sleeping a full 8 hours, my joints stopped aching, and I'm often getting out of bed early, which I haven't done in 2 years. Now I realize that on this drug, I wasn't just tired, I was depressed. Most days I felt like crying (in spite of having a fantastic happy life) and didn't want to get out of bed.”
“Diagnosed in June 2018 Stage 2 BC. Started chemo, stopped after 12th treatment, cancer was getting bigger. Bilateral mastectomy in Dec '18, then 30 rounds of radiation in 2019. April 2019 had full hysterectomy. I was getting the Zolodex shot since Jan'19 and began taking exemestane in February '19 . After the hysterectomy, I really started to notice the side effects. By June my body was aching all over. Knees, back, hands. Headaches occasionally. Weight gain horrendous. From April to June gained 15 pounds and I this was with exercising 2x a day and watching everything I eat. I've started a medication holiday, been off for one week. I'm starting to feel so much better. Lost 2 pounds already. I see my OC next month (July'19). I had ER/PR BC so I'm nervous about not taking anything but my quality of life on this daily pill is atrocious.”
“After trying Arrimidex and Femara I tried Aromasin. I had mild hot flashes, shooting pains in my legs in bed at night, my hands went numbs several times at night, stiff in morning and night, and very achy. I had read of someone who took it every other day for a few months , so I did that for 11 weeks. Now I am taking it daily and have mild hot flashes at night, some fatigue, hands are achy in the morning. My quality of life is much better. My oncologist was not aware of every other day, but it certainly has helped me be able to take this drug. I have never written on a blog but if my experience helps others I'm glad. I was at the point of taking no drugs for my estrogen positive breast cancer. 11/15/16. JW”
“I’ve been on AI’s since 9/2017 for BC in 2016. I’ve used all 3 and am currently on Exemestane. All 3 have caused a significant amount of hair loss, muscle aches, horrendous joint pain, SORES in throat and elsewhere on a regular basis now and worse..broken bones within just a few months of each other WITHOUT FALLING OR TRIPPING. I’m on my 4th broken bone, this one on my spinal cord. I have a huge decision to make.”
Aromasin (exemestane): “I just came off Aromasin, on tamoxifen for 2 years, then Aromasin for 5 years. I am having cold chills and then hot flashes, now. While on it I had all the side effects, sore bones, hot flashes, gained weight, etc. ”
“Been on this exemestane 2 years. Had really bad foot pain the beginning. Had a hysterectomy. Have hot flashes. Not sure if it's from med. Also had numbness in hands and pain. It causes me to be very tired as well. I did start working out and it has helped a ton. No more feet pain, or hand pain. I am not good at taking it every day. I also take breaks when I get to the point where I can't function anymore because I'm so tired. I have gained 20 pounds on this med. I'm able to maintain now with keto and crossfit. But still can't seem to get back to my body I had 3 yrs ago.”
Aromasin (exemestane): “After surgery I was pronounced cancer free but still put in Aromasin. I found the side effects difficult especially insomnia. My schedule is busy and this plus muscle/joint pain is hard. I went off for several months during a vacation and felt far better. I returned to taking it and almost immediately the side effects returned. I have very mixed feelings about continuing. My health insurance covers it so thankfully expense is not an issue. I will probably continue as statistically the drug has proved valuable.”
“I have been on examastine for almost 3 years, I will be finished in Nov. 2020. The first two years I was on tamoxifen. Since being on extmastine I have had 2 carpal tunnel surgeries just so I could do my job. My fingers, joints and wrist ache like no other and I haven't worn my rings for months. 2 more months hallelujah!! Godspeed ladies xoxo”
“I’ve been on aromasin for about 9 months. I had hot flashes for the first few months, rarely now. I experience massive fatigue, to the point that for several months I could barely care for my young children. Moderate exercise helps some with that. The joint/bone pain is unpleasant, but tolerable so far. I have nausea throughout the day, mostly in the morning. Shooting pains in my legs/feet and arms at night. The worst side effect has been the weight gain. 30 pounds in 9 months, despite exercising more and maintaining the same diet, and actually eating less than before. So frustrating. I’m thankful if the drug is keeping the cancer away, but the side effects are really awful.”
Aromasin (exemestane): “I took two years of Tamoxifen, without much side effects that I cannot manage. I took Femara for one year and could not even turn my head and had joint pains to the point I could not turn my head when I was driving. Now I just got off exemestane after 6 months as I cannot sleep even with sleeping pills. I am five years out from chemo and doctor still wants me to take the pills for another year and four months. ”
Aromasin (exemestane): “This medicine I have been taking for 7 months, it is easy to take being such a small pill however the side effects are still there, leg cramps and hot flashes, better than the tamoxifen I was taking for 2 and half years. Overall I think it is a lot better.”
“I took Arimidex which was terrible. I really dreaded starting another medication and possible side effects. However, to my surprise this is far better than I could have imagined. I almost quit taking any medication because of side effects. I am very glad I tried this one. It works for me. I have learned to keep asking and trying different medicines until you find the one for you.”
“I have been on exemestane for 7 months and stopped because of the severe joint pain, especially when 1st getting up from a sitting position or getting out of bed. Been off for about a month and I'm still experiencing symptoms. ”
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare professionals.
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