Letrozole and Pain: What Users Say

• Reb...
• October 1, 2019

For Breast Cancer "I’ve been on Letrozole for 4 years. I had a lumpectomy with radiation, no chemo. I have severe back, hip, and groin pain, muscle fatigue, sleepless nights, and exhausting days. I walk like I’m 30 years older than I am. My pain averages from 5-9 out of 10. I can’t remember a day where I did not have pain. I have a few good days in between the awful days which gives me false hope. I’ve spent hundreds of dollars ruling out other disabilities only to hear the same result - your x-rays, CT scans, and MRIs are fine. I have no quality of life. I used to be a very fun-loving person but rarely smile anymore because of pain. My goal each day is just to get through it. I’ve stayed on Letrozole in hopes that my cancer would not return. I have an oncology appointment this week, and I will be talking with him about discontinuing Letrozole so I can start living again. My heart goes out to all of you who have to deal with these awful side effects."

• Fem...
• October 8, 2013

Letrozole for Breast Cancer "I have been on Femara for 9 months. First few months were tolerable, as time progresses, I am miserable. In the beginning, I experienced nausea and diarrhea. As this went away, the bone and joint pain began. I would be awakened from my sleep in tears as my hips would ache just from lying in bed. My hands and fingers hurt to make a fist or do any type of extended writing. My knees ache horribly. When I get out of bed in the morning, I need to stand still for at least 2 or 3 minutes until I can get my legs to work. The same thing happens when sitting for any length of time. I am 45 and feel like I am 85."

• Fem...
• October 8, 2013

Letrozole for Breast Cancer "I have been on Femara for 9 months. First few months were tolerable, as time progresses, I am miserable. In the beginning, I experienced nausea and diarrhea. As this went away, the bone and joint pain began. I would be awakened from my sleep in tears as my hips would ache just from lying in bed. My hands and fingers hurt to make a fist or do any type of extended writing. My knees ache horribly. When I get out of bed in the morning, I need to stand still for at least 2 or 3 minutes until I can get my legs to work. The same thing happens when sitting for any length of time. I am 45 and feel like I am 85."

• Fem...
• October 8, 2013

Letrozole for Breast Cancer "I have been on Femara for 9 months. First few months were tolerable, as time progresses, I am miserable. In the beginning, I experienced nausea and diarrhea. As this went away, the bone and joint pain began. I would be awakened from my sleep in tears as my hips would ache just from lying in bed. My hands and fingers hurt to make a fist or do any type of extended writing. My knees ache horribly. When I get out of bed in the morning, I need to stand still for at least 2 or 3 minutes until I can get my legs to work. The same thing happens when sitting for any length of time. I am 45 and feel like I am 85."

• Fem...
• October 8, 2013

Letrozole for Breast Cancer "I have been on Femara for 9 months. First few months were tolerable, as time progresses, I am miserable. In the beginning, I experienced nausea and diarrhea. As this went away, the bone and joint pain began. I would be awakened from my sleep in tears as my hips would ache just from lying in bed. My hands and fingers hurt to make a fist or do any type of extended writing. My knees ache horribly. When I get out of bed in the morning, I need to stand still for at least 2 or 3 minutes until I can get my legs to work. The same thing happens when sitting for any length of time. I am 45 and feel like I am 85."

• Fem...
• October 8, 2013

Letrozole for Breast Cancer "I have been on Femara for 9 months. First few months were tolerable, as time progresses, I am miserable. In the beginning, I experienced nausea and diarrhea. As this went away, the bone and joint pain began. I would be awakened from my sleep in tears as my hips would ache just from lying in bed. My hands and fingers hurt to make a fist or do any type of extended writing. My knees ache horribly. When I get out of bed in the morning, I need to stand still for at least 2 or 3 minutes until I can get my legs to work. The same thing happens when sitting for any length of time. I am 45 and feel like I am 85."

• Ali...
• Taken for 6 months to 1 year
• February 26, 2020

For Breast Cancer "I’ve had cancer twice. This second time, I have Stage 3 breast cancer and had to have chemotherapy. I’m on Letrozole, and have been on it since September 2019. Firstly, I can’t believe the pain I’m in. It’s got worse by the week/month. I’m a Pilates teacher and work every day, but I’m finding that there are things I can’t do now, as my hands and elbows are unbelievably painful. I can take a lot of pain, but this is bad. When I get out of bed or up from sitting, I can barely walk away. I also have groin pain and lower back pain, yet I’m fit and strong in every other way. This is getting me down, as I feel I’m on a slippery slope. It doesn’t help that I am high risk for another cancer, and that every pain worries me. I’m sorry that there are so many who are experiencing this."

• Ali...
• Taken for 6 months to 1 year
• February 26, 2020

For Breast Cancer "I’ve had cancer twice. This second time, I have Stage 3 breast cancer and had to have chemotherapy. I’m on Letrozole, and have been on it since September 2019. Firstly, I can’t believe the pain I’m in. It’s got worse by the week/month. I’m a Pilates teacher and work every day, but I’m finding that there are things I can’t do now, as my hands and elbows are unbelievably painful. I can take a lot of pain, but this is bad. When I get out of bed or up from sitting, I can barely walk away. I also have groin pain and lower back pain, yet I’m fit and strong in every other way. This is getting me down, as I feel I’m on a slippery slope. It doesn’t help that I am high risk for another cancer, and that every pain worries me. I’m sorry that there are so many who are experiencing this."

• Chi...
• Taken for 1 to 6 months
• January 26, 2015

Letrozole for Breast Cancer "Had Grade A Breast Cancer that was caught early. Had a mass and one lymph node removed. Went on Femara on Nov. 8, 2014, the day after I finished radiation. At first, I didn't notice anything. Slowly the pain in my feet started, then other joints in my body. I felt like I was having trouble getting air into my lungs. I started feeling like I was in a fog. I already had been diagnosed with depression years ago which was under control with medication. I started experiencing depression a couple of weeks ago which included waking up and crying. That turned into suicidal depression. Without pain medication, I couldn't move around well. The bottom of my feet were killing me. I work full time. I quit the Femara 2 days ago."

• Sta...
• Taken for 6 months to 1 year
• January 9, 2020

For Breast Cancer "Started on Anastrozole for 4 months. It was debilitating to me. Could hardly move, could not sleep, could not focus, had serious brain fog. Oncologist switched me to Letrozole. Started off good, then about 4 months into it, I noticed my hands and feet were so sore, could hardly move them. Swelling, weight gain, intense hand, knee, and foot pain, foggy brain, sweating all the time. The knee pain got so bad, I could hardly walk. Took myself off them, seeing the oncologist in a couple of months. She said I had to have a bone scan and possible transfusion because Letrozole was known to cause issues with bones. I am 54 years old and was feeling like I was 80. I want a quality of life, decided to take the risk at this point. They all have the same side effects, not worth it to me."

• Sta...
• Taken for 6 months to 1 year
• January 9, 2020

For Breast Cancer "Started on Anastrozole for 4 months. It was debilitating to me. Could hardly move, could not sleep, could not focus, had serious brain fog. Oncologist switched me to Letrozole. Started off good, then about 4 months into it, I noticed my hands and feet were so sore, could hardly move them. Swelling, weight gain, intense hand, knee, and foot pain, foggy brain, sweating all the time. The knee pain got so bad, I could hardly walk. Took myself off them, seeing the oncologist in a couple of months. She said I had to have a bone scan and possible transfusion because Letrozole was known to cause issues with bones. I am 54 years old and was feeling like I was 80. I want a quality of life, decided to take the risk at this point. They all have the same side effects, not worth it to me."

• tin...
• Taken for 6 months to 1 year
• April 29, 2023

Letrozole for Breast Cancer "Awful! I've been on Femara for about 8 months. And since I started, I seem to have every single side effect. My joint and muscle pain is excruciating. In no particular order, I suffer with body pain (fingers, hands, shoulders, chest, back, sides, hips, legs, feet - basically everything head to toe). Plus, weight loss, hot flashes, headaches, dizziness, thinning of hair, dry mouth, high BP, night sweats. Even my scalp is tender. Chest pain that radiates to upper arms, shortness of breath, overall depression. Chills, insomnia, intestinal pain - sharp pains, plus dull aching. Constant feelings of nausea, diarrhea, constipation. I'm afraid to eat but also have little appetite. Brain fog, shortness of breath. Feeling that I am just going to die. Sitting up in pain all night. I hurt everywhere - too sick to move; too sick to cry. Feels like I am going to have a heart attack. Can’t lie down, can’t stand up. Full body chills, hands shaking. Haven't slept through the night in months."

• Anonymous
• July 7, 2014

For Breast Cancer "I have been on Letrozole for 9 months. I have dry mouth, extremely dry skin, vaginal dryness, reduced libido, weight gain, and hair loss. My joints are increasingly stiff and painful. I wake in the night from pain and can scarcely walk first thing in the morning. My breast cancer was stage one and I had both breasts removed. I am considering stopping taking it."

• Mil...
• Taken for 1 to 6 months
• April 27, 2016

For Breast Cancer "After 4 months on Letrozole, I felt like an old crock, in pain everywhere, barely able to move, depressed, not sleeping well and developing carpal tunnel syndrome. I've gone off it ready to try something else and after only a week, nearly all the pain and stiffness is gone. I'm sleeping well and have a sense of well-being. Letrozole stole my quality of life and I'm glad I discovered it after not too long. Let's hope other drugs are better tolerated, but if not, I'd rather have quality of life than quantity of pain."

• Deb...
• Taken for 1 to 2 years
• April 2, 2019

For Breast Cancer "I have been on Letrozole for a year now and the hip pain has progressively gotten worse. The hot flashes are manageable now, but the hip pain is debilitating. I can't take NSAIDs because thanks to chemo I now have ulcerative colitis. I am about ready to stop the Letrozole because my oncologist told me all the cancer drugs have the same bone and joint pain side effect. I feel like I am 90 years old and can barely walk at times. Her response is, 'at least you don't have cancer' - thanks Doc but I have other debilitating problems."

• gre...
• November 2, 2015

Letrozole for Breast Cancer "Had lump removed April 2014, 15 treatments of Radiotherapy then Letrozole. The doctor only warned about making my already present aches pains worse but felt this was the best for my age, now 70. I went out with my daughter on Friday and felt I had to drag myself around, so wiped out. I feel the need to sit down all the time. Going upstairs to bed, by the time I get to the top of the stairs, I'm sweating, very hot, and feel like I'm running out of air, I have to sit down on the toilet while I cool down. During the day, I constantly fall asleep. I feel this is a poor life with no energy to do anything. I wake up in the morning with a headache and sometimes feel sick."

• Anonymous
• December 13, 2009

Letrozole for Breast Cancer "I am 52 years old, and I too feel older than I am. I already have problems getting out of bed, and I suffered with sarcoidosis, which affects the organs and causes joint pain, sending me constantly to different specialists. Now I am taking Femara, and it's not only causing me more pain, but it's causing my hair to fall out or thinning! I also notice that my vision is impaired sometimes when I'm driving, and I only drive when I have to, but sometimes I find myself trying hard to focus. This is scary! I am calling my oncologist tomorrow morning first thing."

• fae...
• October 1, 2016

For Breast Cancer "I'm 61 years of age. Approaching my 4th year of taking letrozole Accord. I am suffering with joint ache which attacks my knees, one ankle. Wrists, elbows but has now affected my hands, most particularly my middle fingers of each hand! I also get pins and needles in my hands. The morning stiffness is throughout my joints and takes a while to get going. I have calf pain and muscle weakness and blurry eyesight too sometimes. I don't complain as it's prevented the cancer returning. I do despair at my poor quality of life. I take calcium, magnesium, and pain relief. I walk every day and exercise. I've also gained weight. I'm glad to know there are others with similar side effects but even more glad that I'm here to share my story."

• too...
• November 11, 2015

For Breast Cancer "The pain in my shoulder and right arm is so intense that I cannot function. I have problems taking care of my chores to the point that I just cannot do them. My arm has become immovable due to stiffness and the profound pain. I can't sleep at night unless I double on a sleeping aid. I can't live this way. My life is depressing."

• Bre...
• Taken for 1 to 2 years
• May 2, 2018

For Breast Cancer "I had a mastectomy after finding a small lump (with precancerous cells) in breast tissue. No rounds of chemo needed. Lymph nodes clear. I have been on Letrozole and Anastrozole for a year and a half. Both gave me pain in my joints and muscles, mostly in my hip, legs, and hand. I couldn’t walk far as my legs were weak. It made me tired. I decided to stop them altogether as they were making me disabled and unable to do my job properly. I felt that eventually, I would be in a wheelchair and unemployed. My consultant looked at a graph and said because I was at low risk of cancer returning, I decided to stop taking them. I told him I prefer quality of life over quantity. Now, I'm hoping I get back to normal. It’s been a week now, and already the pain on waking is better."

• Gon...
• Taken for 1 to 2 years
• May 2, 2018

Letrozole for Breast Cancer "1.7 years, loss of hair, hot flashes, shoulder, elbow, hip pain, dry mouth, high cholesterol, high glucose, high BP... But if it keeps cancer from returning, the side effects, hopefully temporary, will have been worth it."

• Gon...
• Taken for 1 to 2 years
• May 2, 2018

Letrozole for Breast Cancer "1.7 years, loss of hair, hot flashes, shoulder, elbow, hip pain, dry mouth, high cholesterol, high glucose, high BP... But if it keeps cancer from returning, the side effects, hopefully temporary, will have been worth it."

• Let...
• April 14, 2016

For Breast Cancer "I was diagnosed with breast cancer, stage 2, invasive ductal carcinoma in Dec. 2014. Cancer was found in lymph nodes; I had a lumpectomy at the end of January, then chemo from March to June. After a one-month break, I went for 5 weeks of daily radiation treatments, followed by a 1-week boost treatment in 3 areas (underarm, cervical, and breast). My oncologist put me on letrozole; I have been on it for 2 years this June, and the only side effect I am currently experiencing is stiffness and leg pain at night in bed. I asked the oncologist what happens after the 5 years of letrozole; she said perhaps there would be another drug on the market - there are not enough studies about long-term use of letrozole."

• Had...
• Taken for 2 to 5 years
• October 10, 2015

For Breast Cancer "After having a doctor prescribe hormones for me for 12 years, even though I only had a partial hysterectomy, I developed breast cancer. When it was found, I was at advanced stage 3 with a tumor just short of a size 8 in my chest wall and left lymph nodes. After massive chemotherapy for 6 months, it shrunk to a size 2, then came the double mastectomy and nodes removed, followed by 30 hits of heavy radiation. This all began in May of 2013, and now in October of 2015, I am in total remission. I am so thankful to my doctors, however, the side effects of all of the treatments and continued treatment of letrozole are awful. I feel 90 and have sudden bouts where I can't breathe and hurt all over. I hate it."

• ell...
• Taken for 1 to 6 months
• March 5, 2016

For Breast Cancer "Have been taking letrozole for about 6 months after being on tamoxifen for 2 years. (I felt great on tamoxifen.) My energy levels have decreased, so I have to try to pace myself and give in if I can't do as much as before. My knees/legs ache, and I also seize up a bit if I sit too long. I feel it's aged me, but I am here with my boys, and that's all that matters. I have loads of hot flushes, but I wear layers. I am trying to stay healthy, walking a lot and doing Pilates. I don't think my body could handle the gym as my bones are thinning due to these drugs. I did become vegan after the initial cancer diagnosis, but now I have a bit of organic milk in my tea and cheese occasionally. My hair has not thinned. Good luck, let's hope they find a cure soon."