Pembrolizumab and Fatigue: What Users Say

• Tex...
• Taken for 1 to 2 years
• September 19, 2020

Pembrolizumab for Non Small Cell Lung Cancer "In the 18 months after my lung tumor was found, I had platinum-based chemo, surgery to remove part of my lung, proton beam radiation, gamma knife surgery, and oral chemo med Iressa. Nothing helped, the cancer spread, and I had mets to brain and bones. Bone mets were so bad that my femur spontaneously fractured. My docs did not initially offer Keytruda because my tumors carried the EGFR mutation. But I did have high PD-L1 (80%), so when nothing else worked, we tried it. After 2 years of treatment every 3 weeks, I had no evidence of disease and remain NED one year after stopping treatment. Side effects were extreme fatigue, headaches, sweats; I still have these. But I am enjoying life and sure that Keytruda saved my life."

• Lou...
• Taken for 1 to 6 months
• May 3, 2017

Pembrolizumab for Melanoma, Metastatic "I have been on Keytruda since January 2017 and have completed my first 12 weeks of treatment. The main side effect has been fatigue. After 12 weeks, I had a PET scan, and the results came back that the melanoma has been stopped from spreading. My melanoma had been very aggressive, it was making new tumors within 10 days, so this treatment has been positive, as nothing new has come up in three months. We will see what the next three months bring."

• Lar...
• Taken for 2 to 5 years
• June 23, 2023

Pembrolizumab for Non Small Cell Lung Cancer "I was given Keytruda along with a chemo cocktail and had no problems. Now, I’ve been taking Keytruda alone for 10 months with no side effects except for fatigue. My lungs are 99% clear of cancer cells, and the cancer hasn’t spread to other areas."

• Koa...
• Taken for 6 months to 1 year
• October 1, 2020

Pembrolizumab for Endometrial Cancer "I have now been on Keytruda almost 1 year. Stage 3 uterine cancer diagnosed in 2018, spent 1 year on chemo/radiation. Cancer came back 4 months later, was put on Keytruda. My body is a mess. Great fatigue, rash, intestinal issues, lack of strength, etc. I feel mostly terrible almost every day. I work too, out of circumstance, not because I want to. I don't want to continue on this drug. I feel my quality of life has diminished greatly on this drug. I love my oncologist, but she keeps trying to tell me most of the side effects I have aren't from Keytruda. ALL of the health issues I have are listed as side effects. My doctor wants me on this for 2 years total. There is no way. My body is so out of whack, I just hope it won't stay that way when I'm off Keytruda, which I think is going to be now. For me, I was miserable taking this as I experienced almost every side effect. I hope some of you do better than I did."

• mrs...
• Taken for 1 to 2 years
• August 20, 2017

Pembrolizumab for Melanoma, Metastatic "I received Keytruda for about 20 months for metastatic melanoma. After the first infusion, we noticed that the visible spots on my back had gotten lighter in color and softer. After over a year of scans that revealed that Keytruda was working for me, a lymph node in my chest began growing. A PET scan revealed that the spots on my back had been killed by the medication, and it had also destroyed a number of small nodules in one lung. But the lymph nodes in my chest were positive. My oncologist believes that my cancer has mutated, and Keytruda stopped working. Side effects were mild. Some mild fatigue, and at the beginning, a very fine itchy rash that was not annoying at all. I just wish it had worked for me a little longer."

• JD8...
• Taken for 1 to 2 years
• March 17, 2025

Pembrolizumab for Renal Cell Carcinoma "I had minimal side effects vs. benefits. I was diagnosed with clear cell renal cell carcinoma with extensive rhabdoid features (extremely rare in adults and very aggressive). I was stage 4 when diagnosed. I had a nephrectomy and then straight Keytruda treatments every 3 weeks. It had metastasized into both lungs and spine prior to treatment. Fatigue was my major side effect. I did have knee and ankle swelling after the first few treatments, but nothing serious."

• Alp...
• Taken for 1 to 6 months
• January 13, 2020

Pembrolizumab for Non Small Cell Lung Cancer "As the 2nd treatment began, I noticed major fatigue, went for a walk, and my blood sugar was 1000. I was not diabetic, but as a result of treatment, I spent a week in the ICU and now I’m a type 1 diabetic. Most people do well with the drug and see real benefits, for me, I’m not sure if I’ll continue given my reaction."

• The...
• Taken for 1 to 2 years
• January 27, 2020

Pembrolizumab for Melanoma, Metastatic "I have stage 4 melanoma and have just finished two years of Keytruda following a metastasis to my bowel. Thankfully, living in the UK, our NHS covered the cost of it. During this time, I had no side effects other than fatigue, which I managed at home. Recent scans have been clear, so for me, I am more than happy with this drug."

• Chr...
• Taken for 6 months to 1 year
• April 4, 2025

Pembrolizumab for Breast Cancer "Side effects: unrelenting itching, increased nerve pain such as carpal and cubital tunnel pain, fasciculations, paresthesias, random sharp nerve pain strikes like I am being stabbed with an ice pick, joint pain, worsening of back and hip pain, arms feel heavy, leg and ankle swelling, abdominal pain, headaches, nausea, mouth sores, loss of appetite, shortness of breath, extreme fatigue, hair loss, increase in tinnitus. I have CRPS, and it has definitely caused an exacerbation of pain in that area! I don’t know if it’s working. I’ve been on it every 3 weeks for 1 year. I only have 1/2 to 1 day of feeling semi-OK within the 3-week cycle, and that is the day before the next infusion! I hope it’s working, but don’t know if it is. I think it’s worth a try if you can stand the side effects, but regardless, if you have an aggressive cancer diagnosis, you’ll do anything necessary or recommended in an effort to keep it from coming back!"

• Mic...
• Taken for 1 to 6 months
• June 11, 2018

Pembrolizumab for Non Small Cell Lung Cancer "My husband has had seven treatments. The worst side effect has been extreme fatigue, although he has continued to work full-time. It affected his thyroid, and he is now taking Synthroid. He has been an insulin-dependent diabetic for many years, and the Keytruda has apparently affected that also. Working with his endocrinologist to get that under control. He will have a scan done in a couple of weeks. Hopefully, it will be good news. We both agree this drug is way better than undergoing chemo."

• His...
• June 19, 2019

Pembrolizumab for Solid Tumors "My husband has stage 4 sarcoma (Lung Epithelioid Sarcoma, squamous cell carcinoma), a rare aggressive form. Appearing in lymph nodes around the lungs and adrenal gland. A large one between the heart and lung, a large mass located on his adrenal gland. Did chemo for 9 months. Tumors between the heart and lung and adrenal gland shrunk to 1/3 the size it was a year ago, has not touched the others around his lung, but the cancer remains stable. Keytruda is NOT without its side effects, he cannot focus to read much, moody for 2 weeks after treatments, then feels a bit better and it's time for another treatment. Seems like he has about 50% of the side effects listed, it also caused injury to his thyroid gland, and the doctor has increased levothyroxine 3 times in 2 months! Arthritis now in his hip and back. Bruising terribly, weakness, fatigue, headaches, insomnia, but he perseveres and forces himself not to give in. He is still here with us."

• Arc...
• Taken for 6 months to 1 year
• January 13, 2025

Pembrolizumab for Squamous Cell Carcinoma "After 3 months, my squamous cell carcinoma completely disappeared. Monitoring PET scans have not shown any cancer recurrence for the past 6 months. I am beginning to experience joint pain, tiredness, and a general feeling of malaise. I intend to discontinue use in another month if the next PET scan is still cancer-free."

• Sun...
• Taken for 6 months to 1 year
• October 30, 2020

Pembrolizumab for Melanoma "I started Keytruda in Feb 2020 for stage 3 aggressive melanoma. Almost immediately, my moods were awful. Swinging like a kid hitting puberty. The doc said it wasn't a side effect. This continued. The fatigue increased. I felt miserable. By late August, I couldn't get off the couch without moaning in pain and couldn't even get into bed. No appetite. Nausea. No energy. I knew I was dehydrated. I declined my next treatment and got fluids. I went to the next appointment to tell the doc I was quitting. Finally, they did labs. My cortisol was >0.1. Another lab test result had ridiculously low levels as well. I should've been in the hospital. Now I'm on steroids, was waiting to see an endocrinologist, and hoping there's no permanent damage. Keytruda almost finished me off."

• HBN...
• Taken for less than 1 month
• January 11, 2022

Pembrolizumab for Melanoma "My grandmother was diagnosed with nodular melanoma (without metastasis). Her oncologist suggested trying Keytruda. She died after two doses! Before starting immunotherapy, she was fine and very active. Side effects: weakness, muscle pain, weight loss, fatigue, dropping eyelids, dysphagia, breathing difficulty, severe diarrhea. I would not recommend this drug based on our experience!"

• Nan...
• Taken for 1 to 6 months
• September 10, 2021

Pembrolizumab for Urothelial Carcinoma "My husband started Keytruda for recurrent bladder cancer stage 4 in January '21. Oncologist said probably won't see side effects for weeks - not so. Next day he started with terrible arthritic pain, dizziness, fatigue, stiff neck, nauseated, unsteadiness in walking. This persisted, and then they gave him steroids. The steroids helped a little, but not much. Took treatment until May '21 and had 'numerous blood clots' in his lungs. 3 days in ICU with infusion to break up the blood clots caused from this horrible drug. Now on heavy blood thinners, has had diarrhea for 8 weeks and oncologist has sent us to a gastrologist. He's also suffering from severe neck issues as his neck droops - another side effect of this terrible drug. He's worse now than when he went through chemotherapy and they removed his bladder. This has been a horrible drug from the get-go - DO NOT USE IT!! PLEASE! It's not worth it..."

• She...
• September 19, 2022

Pembrolizumab for Cervical Cancer "I'm 36 years old, diagnosed with advanced cervical cancer. First time receiving Keytruda along with two other chemotherapies. At first, there was no reaction, later in the week, I had extreme fatigue, severe leg bone pain, a bloody nose, and feelings of being so weak. I don't plan on continuing this stuff. There are too many unwanted side effects, I don't think it's worth it to chance it."

• Mum...
• Taken for 6 months to 1 year
• January 11, 2023

Pembrolizumab for Breast Cancer "I am currently on dose #13, receiving a dose every 3 weeks with a plan for 1 year of treatment. Fatigue and lower body joint pain from the first dose come and go. After the 10th dose, I developed soreness in the mouth with decreased appetite. That has improved, but I still have tender gums and upper palate. These side effects are not enough for me to stop. I had improved scans after 6 months and will repeat them every 3 months. I am benefiting from this treatment."

• Kim...
• Taken for 2 to 5 years
• January 10, 2025

Pembrolizumab for Squamous Cell Carcinoma "All the tumors on my lymph nodes are no longer visible. Infusion every 3 weeks, 1/2 hour long. Low energy seems to be the side effect. Stage 4 cancer seems to be gone. Nothing visible in numerous scans."

• Fra...
• Taken for 1 to 2 years
• May 23, 2021

Pembrolizumab for Esophageal Carcinoma "I was diagnosed with EC in Feb 2019. I did the FLOT4 treatment for 3 months, then I had the Ivor Lewis surgery. I was offered Keytruda after surgery but chose not to do this. At the time after the surgery, I had no more cancer, but 9 months later the cancer metastasized to my brain, which is extremely rare. After my surgery to remove that tumor and 3 quick rounds of radiation, I chose to do Keytruda. I believe in my heart of hearts if I had gone on it after my Ivor Lewis surgery then it would not have metastasized. I have been using it now for just over a year, with very few side effects. My advice, though, is to exercise so the fatigue does not take over. The treatments are simple and only last 30 minutes. I would not use it as a primary treatment for EC. Best is surgery, then if offered Keytruda."

• Anonymous
• Taken for 1 to 6 months
• January 24, 2022

Pembrolizumab for Melanoma, Metastatic "Keytruda definitely sped up my mom to the end of her life. My mom was diagnosed with metastatic melanoma in July of 2019. She had her first treatment of Keytruda on Aug 15, 2019. Almost immediately after the first treatment, she became very ill, couldn’t eat, couldn’t walk, barely had enough energy to talk, all to be expected. She also stopped producing red blood cells and spent the last month of her life in the hospital having blood transfusions every other day, and very quickly all her organs failed. Every single side effect they mention, she had, every single one! She passed a month after she started Keytruda."

• Anonymous
• Taken for 1 to 6 months
• January 24, 2022

Pembrolizumab for Melanoma, Metastatic "Keytruda definitely sped up my mom to the end of her life. My mom was diagnosed with metastatic melanoma in July of 2019. She had her first treatment of Keytruda on Aug 15, 2019. Almost immediately after the first treatment, she became very ill, couldn’t eat, couldn’t walk, barely had enough energy to talk, all to be expected. She also stopped producing red blood cells and spent the last month of her life in the hospital having blood transfusions every other day, and very quickly all her organs failed. Every single side effect they mention, she had, every single one! She passed a month after she started Keytruda."

• Sha...
• October 3, 2022

Pembrolizumab for Non Small Cell Lung Cancer "Stage 4. I went for my first dose, got the IV, but my sodium was 120. They sent me to the ER with the IV. 4 days and now, 4 sodium pills later, it’s almost normal. First dose after, I had to stop because of diarrhea. 5 months later, a CT scan showed much regression in the tumors. Started again, been getting it every two weeks. 4 treatments ago, I broke out in hives. Next dose, no reaction, next dose landed me in the ER with anaphylactic shock. Stopped for 4 weeks. Restarting with pre-treatment. No problems. I have horrible fatigue, but I have MS also, and it’s fatiguing. A couple of spots of rough skin around my lips and a few white spots in my mouth. But in for more treatments, it’s been 18 months and still going, slower but better."

• Ajc...
• Taken for 1 to 6 months
• April 29, 2022

Pembrolizumab for Solid Tumors "My dad has brain tumors and has had a few brain surgeries for removal, and recently tumor cells got in his cerebral and spinal fluid, causing tumors on his spine. The doctor recommended Keytruda as the only option. After the first treatment, he became extremely weak and has swollen legs and feet, plus loss of appetite and fatigue. By the second treatment, 3 weeks later, he became paralyzed in both legs and lost all bladder and bowel control. The tumor is now larger, but the doctor said it could be caused by Keytruda attaching and causing inflammation. We just decided to stop treatment and focus on quality of life. Hopeful he can fight and gain back what he lost from this terrible drug."

• Joh...
• Taken for 6 months to 1 year
• July 22, 2024

Pembrolizumab for Colorectal Cancer "It stopped the cancer, but didn't reverse it. It kicks your butt for about 4 days. You don't do much, just lay around. After the 4 days, you get to feeling better. I get out and work around the house after that. I'm taking it every 3 weeks. It sure beats chemo and radiation. I'll die before I go through that again. Key advice: do your research, don't trust anyone."

• pau...
• Taken for less than 1 month
• February 17, 2023

For Melanoma, Metastatic "My husband had a melanoma removed and radiation, then, 18 months later, it recurred. He was sold on the fact that he needed Keytruda to survive longer than 12 months. A few days later, without the opportunity to consider or discuss with his doctor, he had his first and only infusion and died 21 days later. His death certificate cites myasthenia gravis, myositis, and myocarditis as causes of death. He started showing side effects 7 days after infusion, fatigue was the main one. Then muscle weakness, and he fell and was taken to emergency. His condition deteriorated within days and was admitted to the cardiac ward, where his condition changed for the worst each day. He was then transferred to ICU, where he was paralyzed, and his oxygen levels plummeted. Even after the reversal protocol that was given 5 days earlier, it could not save him. We are beyond belief how you can be told that the worst side effect would be fatigue and possibly itchy skin and even less possible you could suffer thyroid issues."