Pembrolizumab and Weakness: What Users Say

• Toy...
• Taken for 1 to 6 months
• July 24, 2019

Pembrolizumab for Non Small Cell Lung Cancer "My father was diagnosed with NSCLC in July 2018. We were told he was not eligible for chemotherapy and that Keytruda was his best option. My father had his first treatment 1 week later, and 2 weeks after treatment, he presented to the ER with weakness, severe shortness of breath, and restlessness. He was admitted for pericardial effusion. He had his 2nd treatment, and 1 week later he went back to the ER with severe shortness of breath, loss of appetite. At this point, he had lost weight and was admitted for pneumonitis and hypoxemia. My father's health declined so rapidly after taking this medication within a month's time. After his 2nd hospitalization, his quality of life was minimal to none; he was a total assist as he could not do anything for himself. He was placed on hospice 1-2 weeks after his last hospitalization and passed away 1-2 weeks after being placed on hospice. My family and I were given false hope regarding this medication, and it killed my father and stole what time we had left with him."

• Sha...
• July 29, 2019

Pembrolizumab for Small Cell Lung Cancer "My husband was diagnosed with small cell lung cancer in May. He did not want chemo or radiation, so his doctor suggested Keytruda. After the first week, he became weak, had a rash on his back, experienced muscle soreness, and had swollen feet. At the next doctor visit three weeks later, he told the doctor about the side effects, but the doctor didn't think it was the Keytruda, but an injection he had also received to build up his bone marrow. The doctor convinced him to continue with Keytruda. After that infusion, he had severe muscle soreness. He couldn't walk, had no appetite, and was completely bedridden. We decided then that was the last dose of Keytruda he would have. It has now been approximately six weeks post-treatment, and the Keytruda is out of his system. He is starting to feel good again, back to golfing and having some quality of life. I know now if he had continued the Keytruda, I felt that he would have died after the third infusion. He will now be with me a few more months or years with some quality of life and dignity."

• Pat...
• Taken for 1 to 6 months
• September 30, 2018

Pembrolizumab for Cervical Cancer "So far, I've been on this medication for a month and a half, and I have noticed a decline in my strength, and I have severe weakness, and I can no longer walk. Before I was taking this drug, I was able to get around with a walker, and I had more strength. I believe this medication makes you weaker, which I don't understand because if it boosts your immune system, you would think that it would make you stronger and give you more energy. Yet it is doing the complete opposite, and I am still getting more tumors in my lungs. So I don't think it is doing what it's supposed to do. I might come off of it and give my body a break and go back to some other chemotherapy regimen to shrink the rest of the tumors. Let me know if you have any experience like this with Keytruda for cervical cancer."

• Anonymous
• August 24, 2017

Pembrolizumab for Head and Neck Cancer "I personally do not advise Keytruda to anyone. I had a loved one walk into the oncologist to receive this treatment, and three weeks later she was wheeled back into the oncologist's office, unable to walk, her body was falling apart thanks to this atrocious treatment. Five weeks have gone by, and she is currently laying in a hospital bed in the middle of her living room, unresponsive, and is thought to pass away within the next three days. Please keep loved ones away from it."

• Nan...
• Taken for 1 to 2 years
• September 26, 2019

Pembrolizumab for Non Small Cell Lung Cancer "My husband, age 66, with lung epithelioid sarcoma stage 4. Rare form and aggressive. Keytruda caused hypothyroidism, weakness, aches and swelling in arms and legs, tingling and numbness in feet, severe mood changes. Yes, this Keytruda has helped him fight this cancer but at a cost to quality of life. It is wonderful to have him here with us after 20 months of battling this cancer, but it saddens me to see he cannot fully enjoy life. Keytruda also caused his eyes to blur and therefore he cannot read books, which he has always loved to do! At what cost shall we suffer just to stay alive? Not to discourage others from taking this drug, everyone reacts differently to drugs, and many can continue to support their families. But in my husband's case, he has the side effects listed on the website."

• Con...
• April 12, 2019

Pembrolizumab for Non Small Cell Lung Cancer "My husband has stage 4 NSCLC diagnosed in 2016. On March 31, 2018, he was diagnosed with a 5 cm tumor on his right frontal lobe of his brain, which was surgically removed. Dr. started my husband on Keytruda in May of 2018. All was going well until Nov 29, 2018, a brain scan showed 5 tumors on the dura lining around his brain, which is inoperable. He had radiation, which did get rid of the tumors for now. Dr. kept him on Keytruda. 6 weeks ago, after his Keytruda treatment, my husband got very weak, short of breath, and stayed in bed 95% of the time as he was so exhausted from doing nothing. 3 weeks later, he had another treatment of Keytruda and the same thing again: weakness, in bed all the time, and short of breath. Today, he was feeling much better but had to have his Keytruda again today. I will monitor him to see if this treatment kicks him down again. Does anyone have any advice? His oncologist states that Keytruda is the only thing keeping him alive right now."

• 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."

• Ben...
• Taken for 1 to 6 months
• January 21, 2023

Pembrolizumab for Renal Cell Carcinoma "I have had three infusions of Keytruda and had headaches, and felt lethargic, weak, and tired. My blood reading was very bad after two infusions. After the third infusion, my doctor took me off Keytruda. It caused my thyroid to develop hypothyroidism. I now take 150 micrograms of levothyroxine, and my atopic dermatitis has worsened. I have dry eyes and blurred vision at times too. Thank goodness my therapy was an adjuvant therapy. I have been off Keytruda for four months, but I am still having skin breakouts and peeling. I would only use this drug if you have cancer. I would not use it for adjuvant therapy. It has way too many side effects!"

• Mic...
• May 14, 2020

Pembrolizumab for Small Cell Lung Cancer "After the first infusion, immediate aggravation of my arrhythmia to the point of having episodes daily unlike ever before. Developed a persistent cough which made speaking difficult. Also, shortness of breath. Mentioned arrhythmia to my oncologist who was not inclined to blame Keytruda for the increased frequency, although arrhythmia is a known side effect. Three weeks later, the second infusion, everything worsened to the point of debilitating weakness. Researching Keytruda, I discovered it is NOT the wonder drug touted by so many. A lot of side effects, failing health, and death. Prior to Keytruda, I experienced myself daily as healthy, although diagnosed with lung cancer and infrequent arrhythmia. Today, my quality of life is so little that I have decided to discontinue treatment. A third infusion might very well kill me. It's just not worth it. While Keytruda does seem to help some, it seems to injure many more, like myself."

• joh...
• Taken for 6 months to 1 year
• July 13, 2018

Pembrolizumab for Solid Tumors "My mother has been taking this for a few months, and she has completely changed. She suffers from extreme memory loss, confusion, body rashes, and now has to get fluids weekly because she sweats constantly. She has lost an insane amount of weight, lost all her muscle, and is shaky. Her body is in constant pain. She took a break from it for a few months, and during that time, she felt better, but her cancer came back. They say she will be taking this drug for the remainder of her life. 'It'll keep her alive,' but honestly, at what cost? This medicine has robbed her of her quality of life. I would never recommend this to anyone who is looking for healing. It does more harm than good."

• 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!"

• Joe...
• Taken for 1 to 6 months
• November 14, 2020

Pembrolizumab for Gastric Cancer "This medicine shortened my father's lifespan. In 2019, he was diagnosed with stage 4 gastric cancer that spread to his liver. After a few rounds of regular chemo, his cancer shrunk, and he was feeling much better. Then, they switched his oncologists. His new oncologist said that he already took too many rounds of chemo, so they prescribed him to go on Keytruda. A few months into his treatment, he started feeling a lot weaker. After they did a CT scan, it revealed that his cancer had been spreading for a few months and started to spread around the same time he went on Keytruda. They still put him on another round of Keytruda. After that round of Keytruda, his skin started to get yellow, and he started to feel weaker. After being admitted to the ER, they said they could not do anything. The cancer had overtaken his liver. He died a few weeks later. Keytruda has not worked for him and might have contributed to his death by destroying his organs."

• Jda...
• Taken for 1 to 6 months
• November 29, 2020

Pembrolizumab for Non Small Cell Lung Cancer "Relaying information on a family member who probably died due to complications from Keytruda. Protocol of three infusions. Two were administered. After the second infusion, she began to have gastrointestinal complications. Hospitalized for five days while she was stabilized with steroids and antibiotics. Returned home with a course of oral steroids and Imodium. Continued to slide. Readmitted several weeks later with the same symptoms - weakness, debilitating diarrhea. Final outcome - gastrointestinal hemorrhage, anemia, and hypotension."

• old...
• Taken for 6 months to 1 year
• December 26, 2024

For Non Small Cell Lung Cancer "Keytruda saved my life. Cancer had spread from the right lung to 17 lymph nodes across the body. White and red counts were almost zero. No chance of surgery as NSCLC too far along. I did the platinum chemo and radiation at the same time. Had every side effect, they stopped both twice. White and red counts stayed so low I was in the hospital four times. I was so weak, it took a couple of people to lift me onto the table for radiation daily. Had pneumonia four times. Started Keytruda. To my surprise, I felt better, could walk, move, and had energy to function by nine weeks in. Even my blood work showed normal red and white counts, the best in seven months. Started walking with a cane instead of a walker. Now battling chronic body pain, but health is better and walking is still good. My mind is focused on survival now and being one of the ones who makes it five years or more."

• 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."

• 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."

• JQa...
• January 12, 2021

Pembrolizumab for Small Cell Lung Cancer "My father was diagnosed with stage 4 lung cancer in September. The doctors started pushing him to take Keytruda. After his first treatment in October, my dad began experiencing extremely painful indigestion. A few weeks later, he became weak and tired, and his shortness of breath worsened. Just after his 3rd round of Keytruda, my dad couldn’t get out of bed for 2 days. We FaceTimed with his doctor a few days later, and he showed her his heart rate, which was very high, as well as his O2 levels, which were low. She said that all he needed was to be put on steroids and that they would skip the Keytruda the following week. I was on that call. The next morning, December 5th, my father was found dead on his living room floor. DO NOT USE THIS DRUG. Please read up on its deadly results with patients with lung cancer before letting doctors who want to use your loved one for an experiment."

• Ms ...
• Taken for 6 months to 1 year
• July 2, 2024

For Colorectal Cancer "For the most part, my cancer is clearing up after 6 months of treatment. My thyroid is shot, I'm now on 50 mg Synthroid, I'm very tired, weak, fatigued most of the time, can't get in the direct sunlight because it stings, and could have a severe skin rash. I'm happy that my tumor went from 11 cm down to 7. Small hot spots have gone completely. Would I do it again, absolutely. It's a miracle drug!"

• dav...
• Taken for 1 to 6 months
• October 25, 2024

For Bladder Cancer "Lie on the hospital bed for 3 hours every 3 weeks, infusion into pre-transplanted catheter (Jan 9, 2024). No side effects to start with, chemo till March (no effect), then pembro ever since, with TEP and full-body scans in between times. Side effects after 2 months --- gross fatigue, joint pain, weakness (male, age 75, weight 94 kg), tinnitus, difficulty using stairs. Better now after prednisolone the last month. Dizzy sometimes."

• Ano...
• April 30, 2025

Pembrolizumab for Breast Cancer "I have stage 4 metastatic HR+ cancer to my spine, skull, sternum, left pelvic iliac crest, and left femur. Started Keytruda alone in August of 2024. Latest CT and bone scan shows (April 25) no new lesions and some improvement in the current ones. Mostly I am extremely tired for a few days after infusion (250/3 week intervals), have muscle weakness, increased back pain, and loss of appetite. I know when the 3 weeks is almost up because I start getting a bit of an appetite back. Obviously I have no port because of the treatment interval, infusion sites are limited to my left arm and, in a pinch, my lower right arm - right modified radical mastectomy with some resulting lymphedema - as luck would have it, all the “good” sites are on my right side. Luckily, it’s never taken more than 2 sticks to get an IV established."

• Doc...
• Taken for 6 months to 1 year
• July 23, 2024

Pembrolizumab for Bladder Cancer "Weakness, colitis, neuropathy, dizziness, lack of energy. Cancer seems to be going away."