Letrozole and Insomnia: 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."

• Jay...
• Taken for 1 to 2 years
• October 9, 2019

For Breast Cancer "After mastectomy surgery, stage 2, cancer in 2 lymph nodes inside mammary tissue. No chemo/radiation. Began letrozole, experienced hot flashes and insomnia. After one year, no hot flashes but sleep disruption. As I entered the 1.5-year mark taking letrozole, I began to have joint pain, deep aching, and less strength in hips and knees. As a former therapist, I switched to exercise in the pool as I could no longer tolerate joint pain with land-based exercise. By the 2-year mark, decreased stability when walking, difficulty climbing steps, and getting up from a chair or toilet. Prior to surgery, I had been walking 3 miles a day. Now, pain limits walking to a block. X-rays prior to surgery showed no significant arthritis in any joints. Now unable to get out of a chair without 8/10 pain. Stopped taking the medication, and 3 days later pain decreased from 8/10 to 5/10. 3 weeks after stopping the pill, pain is at 3/10, with lingering weakness in hips and knees. Mind is now less foggy. Quality of life is more important than continuing to take this medication."

• NJg...
• August 2, 2019

For Breast Cancer "Was on Letrozole for 7 weeks. Had debilitating side effects which included nausea, vomiting, appetite loss and weight loss, chronic fatigue syndrome type pain, bilateral swollen glands, joint pain, inflammation in any prior injury area, pain radiating from shoulders down to hands, anxiety including body tremors, agitation, depression, uncontrollable crying, feelings of hopelessness and helplessness, feeling of being hit by a truck, the flu, laundry kicked down three flights of stairs, no energy, need to sleep during the day, inability to sleep at night, hair loss and hair thinning just to name the top side effects. Voluntarily went off drug. Oncologist confirmed that some women just can't handle this drug and I am one of them. A month later I am back to normal. I am cleaning house, I am sewing, I am reading and swimming."

• 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."

• Sho...
• September 21, 2016

Letrozole for Breast Cancer "I've been taking letrozole (Femara) for 9 months, after a right-side mastectomy for stage IIA breast cancer. I'm ER & PR positive. No radiation or chemo. I'm 58 & this is the only drug I take, besides vitamins. The first 6 weeks I had trouble sleeping, occasional dizziness, some joint pain, & mild headaches. Around 4 months in, I started losing hair. I'd guess approximately 25% of my hair has fallen out. Besides the hair loss, I have dry eyes, genitals, & skin. There's some stiffness & joint pain in my hips. These side effects are tolerable, especially knowing that the drug is preventing a cancer recurrence. None of these side effects are enough for me to stop taking letrozole!"

• 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."

• Sco...
• Taken for 1 to 2 years
• February 25, 2020

For Breast Cancer "In January 2019, I was diagnosed with breast cancer, Stage 2. 58 years old. Left breast mastectomy with no radiation and no cancer in the lymph nodes. Given Letrozole 2.5 mg. Side effects of this medication: severe hot flashes, chills, severe pain in my hands, knees, feet, and legs, foggy head, muscle pain, insomnia, poor memory, extreme tiredness, canker sores, and occasional pain in my upper abdomen. During the first four months, I experienced hair loss and itchy hands. I quit my job as I was just too tired to continue. Now, I wish I would have quit Letrozole instead. I will see my cancer doctor in a few months, and this will be discussed. If I don’t quit before."

• CHA...
• Taken for 6 months to 1 year
• February 26, 2014

For Breast Cancer "Was on Arimidex for one year but was changed to Letrozole because I couldn't walk due to burning sensation. Side effects after treatment have been: bone weakening, fatigue, insomnia, night sweats, weight gain (40 lb), dry hair, feel older than 71, redness in my face, high blood pressure, neuropathy, burping, stiffness after sitting, memory loss, joint pain...but I am happy to be alive. I try not to complain because I want my husband to be happy."

• 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."

• flg...
• January 9, 2016

For Breast Cancer "I would give a lot to have NEVER taken Femara! It aged me 20 years in a few months. I took it for more than six years before I told my oncologist I would not take it anymore. It was killing me! I was sleeping an average of two hours a night... a 'good' night was five hours every ten to fourteen days. The other side effects were awful! Femara did NOT keep the cancer from coming back! It is KNOWN to weaken the bones, and the cancer is now rampant in my bones!"

• MVR...
• March 3, 2012

Letrozole for Breast Cancer, Metastatic "After a year on Femara I am beginning to experience severe hair loss, bald patches on top of my head, and the hair is turning thin and brittle. Insomnia for the last 2 months, pain in my joints, I was diagnosed with Glaucoma and am very forgetful, i.e. find it difficult to concentrate. But, if Femara stops the recurrence of cancer, I'll keep taking it. If it just were not for the hair loss."

• Jue...
• Taken for 1 to 6 months
• May 9, 2016

For Breast Cancer, Adjuvant "My 6 months on Letrozole have been a nightmare; extreme hot flushes, soaked clothes/bedclothes. I can't fall asleep even though exhausted. I'm so fuzzy-brained I despair and have lost confidence in normal conversation. Bone pain and frequent lower leg cramps are excruciating. I've aged 10 years, changed shape, gained over 10 kg, all of it around my waist. I fall; I've sprained both ankles in six weeks. I never know when a fall is coming, there's no warning, I just collapse. In addition to my normal drug regime, I now need 5 additional drugs to try to counteract the side effects of Letrozole. It may be keeping me alive (who really knows?), but it's destroyed my life in the process. I dread to think what 4.5 more years on this drug will do to me."

• Pen...
• March 6, 2012

For Breast Cancer, Adjuvant "I'm with Little D. I've been taking letrozole for 4 1/2 months and have just stopped. The pain has been unbearable, mostly my legs and hands. Unable to sleep even though I'm exhausted, and my hot flashes are really hot fires. I was stage 1 with radiation and unable to take tamoxifen due to being on antidepressants for some length of time. My oncologist and I will decide what direction to take at the end of March. I am 54 and all about quality rather than quantity. I have 3 grandchildren that I want to play with TODAY!"

• Fif...
• April 28, 2016

For Breast Cancer "Diagnosed with breast cancer, Nov 2013, double mastectomy, chemo, radiation therapy, oophorectomy. Side effects: leg cramps, disturbed sleep, palpitations, hot flushes, muscle, joint, and back pain, hair thinning, nausea, fatigue, increased appetite, breathlessness."

• Nan...
• Taken for 1 to 6 months
• July 23, 2019

For Breast Cancer, Adjuvant "Stage 2 adenocarcinoma of the breast found on mammogram four years ago. Lumpectomy with clean nodes, then 5 weeks of radiation therapy. Started on Arimidex with severe hip and joint pain, constant hot flashes, insomnia. After 6 months of this, switched to Tamoxifen, bone pain improved, other symptoms unchanged. After 3.5 years, had pre-cancerous cells with thickening in the uterus requiring D&C. Switched to letrozole three months ago. Insomnia and hot flashes markedly lessened, but the back and hip pain is relentless. Chiropractor and ibuprofen help, but not sure I can tolerate this one more entire full year (plan is 5 years post-surgery, so one more year this month)."

• Yoj...
• January 4, 2018

For Breast Cancer "Had chemo every other week for 4 treatments, surgery, another 4 sessions of chemo, then radiation every weekday for 33 sessions. Neulasta shots day after chemo, that was so horrible, excruciating body aches. I've been on letrozole for 8 months. Side effects have been muscle aches, fatigue, some nausea, dry mouth, trigger thumb, hot flashes, weight gain, blurry vision, insomnia, occasional decrease in appetite, neuropathy mostly in my feet (maybe from the chemo?). Is that enough? My doctor wants to give me a 3-4 week break, but I'm scared to stop. I can live with these side effects if it keeps me from a recurrence. I am feeling better, not quite as tired or nauseated. I'm glad I'm not the only one with the symptoms."

• Ani...
• Taken for 1 to 2 years
• April 7, 2016

For Breast Cancer "Was diagnosed in Oct 2014 with endometrial stroma sarcoma and put on Letrozole 2.5 mg (UK). Small tumors near my liver have now disappeared, and the main tumor has shrunk from 2.7 to 1 cm. Side effects have been very bad from nausea, dizziness, aches and pains (sometimes from head to toe), stiffness in all the joints, brain fog, and tiredness. Yes, some days you wonder if it is worth it, but then you look at the family and decide there is no option but to keep fighting. Taking loads of supplements and herbs, which have helped somewhat, and acupuncture. The insomnia is very hard to deal with - nothing seems to help at all with that. Now having a 4-month break. Oncologist suggested 1 month, but after 1 month, the effects are still there."

• Anonymous
• October 1, 2017

For Breast Cancer, Metastatic "It was toxic to me. Severe joint pain, insomnia, osteoporosis, increased cholesterol count, and spinal stenosis. I also lacked libido and energy. It is worth the small chance of recurrence. I am still in pain, and I have been off of it since the end of April. It has impacted my life enormously; I regret taking it."

• Isl...
• Taken for 2 to 5 years
• October 4, 2021

For Breast Cancer, Metastatic "I've been on letrozole for 4 years, since I was first diagnosed with stage 4 metastatic breast cancer. The first year, I also took Kisqali. Two years ago, I was able to take just letrozole alone and it has kept me stable with no progression. I have gained 20 lbs over the past two years, impossible to lose. I also have a lot of aches and pains in my bones and muscles. I also have insomnia, sweating, and genitourinary syndrome. I've also become prediabetic. Unfortunately, I can't go off of this medication as stage 4 is terminal. I am fortunate to only need a hormone blocker for now, but the side effects are still intolerable at times."

• Mar...
• Taken for 6 months to 1 year
• March 21, 2018

For Breast Cancer, Adjuvant "A lot of side effects: pain, insomnia, irritability, loss of attention and memory."