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Keytruda for Non Small Cell Lung Cancer User Reviews (Page 4)

Reviews for Keytruda

Commonly mentioned side effects
  • Mom...
  • Taken for 6 months to 1 year
  • April 7, 2023

"My mom, at age 87, was diagnosed with stage 1 lung cancer in February 2020. She had SRT (Stereotactic radiation therapy) 5 treatments and had CT scans every 6 months. She was told everything was well. However, in January 2022, she was diagnosed with malignant pleural effusion, and her only option was immunotherapy. Her PDL1 met the criteria, and she had 9 treatments, with infusions every 3 weeks. She had zero side effects, but the effusion did not subside, so she stopped treatment. Her oncologist told me to bring in hospice. However, 8 months later, she is still here and doing quite well. She is on oxygen 24 hours a day, but at age 90, she is enjoying her life. I feel bad for everyone who had a terrible experience with this drug. I am not sure if the Keytruda helped; hospice has been giving her daily prednisone, which also seems to have helped. I am now not sure what to think."

8 / 10
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  • Nes...
  • Taken for 1 to 6 months
  • December 23, 2020

"My husband had non-small cell stage 4 lung cancer. His doctor recommended infusions of Keytruda because, after testing, he considered my husband to be an excellent candidate for immunotherapy. He had little to no symptoms of lung cancer at the time. The only reason we knew he had it was due to a coincidental CT scan due to his occasional heart arrhythmia. But after his first infusion, he began coughing and his incidents of arrhythmia increased to nearly every day from once every 2-8 weeks. He became debilitated from his normal life. After the second infusion, everything worsened and he began having difficulty breathing as the cancer apparently had been launched into high gear by the drug and his lungs were filling with fluid. One and a half quarts of fluid were removed from his lungs, but he eventually came down with pneumonia and died 4 days later. I blame Keytruda for taking away precious time we needed together. I would not recommend this drug. It is much too risky!"

1 / 10
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  • Sun...
  • Taken for 6 months to 1 year
  • December 25, 2022

"My mom was on Keytruda for a year. No side effects for most months. After about 6 months, she got a respiratory infection (head congestion, coughing up phlegm, and a little wheezing). Drs thought maybe it was a side effect, so they delayed her treatment 1 week. She was put on antibiotics and an inhaler. She needed a 2nd dose of antibiotics. She never felt sick. She was just experiencing these symptoms. After about 6 weeks, it cleared up. Other than that, she had no issues, and she was up and about the entire year. Cancer was mostly stable... (some new small growths, some shrinkage of growths, and most were stable for 1 year). Unfortunately, after 1 year, the cancer is showing some signs of progression, so they are switching her to a new med."

8 / 10
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Frequently asked questions

  • Ken...
  • Taken for 1 to 6 months
  • October 5, 2024

"Was being treated for a nodule on the right middle lobe. Had a lobectomy and 4 cycles of chemo. Started Keytruda, 400 every 6 weeks. All went well through 5 infusions, then during the 6th, I crashed. O2 down to 47, BP 200/100. Turned gray and trouble breathing. Quick action by the nurses brought me back within 2 minutes. There was no warning except very dry throat suddenly. Fortunately, the event took place in the infusion center or it could have been the end. Oh, and the Keytruda affected my thyroid. I blame nobody. It was my body’s reaction after 6 months of treatment. Perhaps 400 is too much per infusion and builds up in the body over time."

4 / 10
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  • Col...
  • October 24, 2021

"I took Keytruda successfully for 2 years. My oncologist wanted me to keep taking it since I was doing so well, even though the drug shouldn’t be taken for more than 2 years. At almost exactly the 2-year mark, my body filled with fluid. I gained 30 pounds almost instantly, and my skin was itchy and painful. After a sort of brush-off from my oncologist that Keytruda was the reason, I saw many doctors until I got to a rheumatologist that figured it all out for me. I now have cutaneous scleroderma caused by the Keytruda and it is so painful. Now all efforts are to treat the scleroderma and not the cancer."

3 / 10
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  • Dav...
  • Taken for 1 to 2 years
  • September 11, 2024

"6/9/22 I was diagnosed with cancer in my lung and the lymph nodes around my heart. It migrated to the base of my spine and my right hip. I had a pin put in my leg bone, it was almost eaten through. I received 10 redaction treatments. I saw on the doctor’s chart to “keep patient comfortable,” and after radiation and chemo, I was bedridden and couldn’t go to the bathroom. It was months of not being able to sit in a chair. I got on it around 9/22, and I started to get better day by day until I could drive. I’ve been on it now for 2 years every 3 weeks, and now they want to take me off Keytruda because they say it is only effective for 2 years, and insurance/Medicare will only pay for 2 years. Right now, I feel as good as I did just before I was diagnosed. PET scans showed no activity. I’m not sure what I’m going to do next. I can pay for my own PET scans ($1,500) every 3 months until something shows up and then figure it out from there."

9 / 10
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  • Joh...
  • Taken for 6 months to 1 year
  • January 11, 2023

"I started Keytruda 18 treatments ago on a lung tumor of 9 cm. The tumor shrank to 4.5 cm after 7 doses and then stopped. The side effects of this medication are ridiculous. My last scan showed the tumor has grown to 5.2 cm now, and I now have swelling of lymph nodes by my stomach. I asked to be put on chemotherapy but was told Medicare had to approve, and that can take 21 days, meaning it leaves the tumor to grow in my lung with no treatment."

1 / 10
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More FAQ

  • Alp...
  • January 31, 2021

"Keytruda gave me type 1 diabetes after 1 treatment. I stopped because my cancer was treatable with radiation. I indicated in this blog that I’d be reluctant to resume treatment. Well, after 9 months post-Keytruda treatment, I've been diagnosed with inoperable chest wall cancer, very aggressive. With 6 months to live and failed radiation treatment, I resumed treatment with Keytruda. I might regret the choice, but have little to lose."

2 / 10
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  • Bos...
  • Taken for 1 to 2 years
  • July 28, 2024

"The mouth ulcerations are awful. I just had a tooth break off because of the recession of my gums. I expect my teeth to fall out. It’s very disheartening. I also have uncontrollable female itching. The steroid ointment helps, but nothing cures it. I need something to cure my mouth so my teeth won’t fall out, and the gum condition is awful. No one seems to know how to help me."

6 / 10
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  • mot...
  • Taken for less than 1 month
  • December 15, 2023

"I started Keytruda on November 26, 2003. The first 2 days were OK... I felt no different but I'm scheduled to have my second treatment on December 20, next Wednesday, and I really do not want to do it. I have been so weak, tired, in pain, mouth pain and redness to the point that I cannot eat. It's so bad. Diarrhea, no appetite at all. Losing weight, which I started at 120 and now I am probably 110. I am a 5'9 man, 71 years old. I am wondering if it is worth going through the 2 scheduled treatments. I'm hoping I'll feel better but if it's going to be like this or worse... I'm done. They tell you that it's not as bad as the old chemo but to me, it sounds like all the same side effects."

5 / 10
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  • Bob...
  • Taken for 1 to 2 years
  • December 7, 2024

"In one year, my lung cancer tumors are gone. I still have another year on Keytruda for the complete treatment. After each treatment, for 3-4 days I have some itching, which I apply Cortizone-10. Doing this for 2-3 days resolves the itching until the next treatment. After about 4 months of treatment, I began gaining weight. I have adjusted my diet, checking the calories I am eating, etc., but still continue gaining weight. Have not discussed this with my doctor yet but plan to very soon. The weight gain is beginning to affect my daily activities. I do not plan to stop the treatments as I know the Keytruda is eliminating the cancer."

9 / 10
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  • Jda...
  • Taken for 1 to 6 months
  • November 29, 2020

"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."

1 / 10
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  • Ros...
  • Taken for 1 to 2 years
  • May 16, 2023

"Diagnosed stage 4 after one year in remission, was a huge shock. I experience a 40 lb weight gain, and muscle and joint pain. The dosage began a 21-day cycle along with chemo, and 10 months later I went to a 6-week cycle."

10 / 10
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  • Sha...
  • October 3, 2022

"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."

8 / 10
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  • Fra...
  • Taken for 1 to 2 years
  • August 19, 2024

"My life is virtually normal... a wonder drug, provided it continues to obviate chemotherapy. Six months after starting, the hotspots appearing after lobectomy have disappeared and remain invisible after 1 year. Side effects are minimal, with sore lips best treated with dilute salt and baking soda solution, and I feel lazy for a week or two after injection."

9 / 10
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  • Lal...
  • Taken for 6 months to 1 year
  • January 5, 2020

"My brother, a disabled vet who has smoked 4 packs a day since he was a teen, has Stage 4 SCLC. The VA Dr. gave him 9 months to live. Non-operable and no radiation offered. They offered him 8 Keytruda treatments, and the tumors did shrink. He’s done well except for horrible leg, feet, and especially knee pain, so bad he’s wheelchair-bound because he’s a fall risk. He is also a diabetic and schizophrenic. He’s been at the VA for over a year, and now they have moved him into the nursing home part. The problem is the nursing home part of the VA has not taken him for the Keytruda in two months. Nobody is telling him or me anything, and his social worker, that he got two months ago, has not reached out to either of us, nor have any of the Drs. Strangely enough, he is 63 and diagnosed with schizophrenia at 17. He has been a normal person, the brother I am now getting to know since being at the VA for over a year. He is still smoking 4 packs a day. No Drs are telling him what’s going on."

6 / 10
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  • Lin...
  • February 13, 2023

"I was diagnosed with non-small cell lung cancer, plus a large tumor on my neck that's attacking my lymph nodes. I have several small tumors on my neck as well as a mass on my right lung. I'm in a lot of pain physically and mentally. My doctor wants me to start Keytruda soon, and I would like to know if anyone can share with me the pros/cons they have had using Keytruda."

5 / 10
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  • Bil...
  • Taken for 6 months to 1 year
  • March 19, 2025

"If I could do it over again, I would refuse to take Keytruda. Months after finishing, I am still suffering from side effects, and no one seems to have any ideas on how to stop the almost constant diarrhea. I have taken Imodium, but it doesn't help."

4 / 10
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  • Ter...
  • Taken for 6 months to 1 year
  • March 13, 2025

"I felt side effects within two months: first, numbing of my feet, then my colon swelling and hurting. Everyone thought it was leftover feelings from chemo. I told them, No, it was not. Third month, I was in the ER with pains in my colon. At eight months, again in the ER, so sick, colon inflammation was horrible. Now my leg is numb with fingertips. Oh, I forgot, my thyroid went south too. The drug might help, but I think you should be very, very aware of sick effects."

5 / 10
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  • MMa...
  • Taken for less than 1 month
  • October 22, 2019

"5 days after my mother-in-law's first infusion, she passed unexpectedly. She showed no sign of pain. After reading the reviews, I now believe it was Keytruda that killed her... Stage 4 non-small cell."

1 / 10
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  • J ...
  • Taken for 6 months to 1 year
  • February 14, 2019

"I have been on it for nine months and have had no problem and three clear CT scans. I have stage four small cell lung cancer. Working for me."

10 / 10
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  • yag...
  • Taken for 1 to 6 months
  • September 16, 2018

"Had five treatments, 2 spots gone and one has shrunk by 25%."

10 / 10
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  • swa...
  • Taken for 6 months to 1 year
  • April 3, 2018

"My mother has been on Keytruda for 6 months, is doing very well. Has had very little side effects. She has stage 4 lung and metastatic bone cancer."

8 / 10
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  • Nic...
  • Taken for less than 1 month
  • December 7, 2018

"It gave me extreme diarrhea and terrible stomach pain. If I could go back and not take this medication, I would. I discontinued it after 30 days."

2 / 10
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  • San...
  • Taken for 5 to 10 years
  • March 27, 2024

"Excellent 5.5 years, tested 80% positive PDL... Original diagnosis Nov 2017, Stage 4 metastatic NSCLC. Stopped treatment Oct 2022... Regular scans show no active disease."

10 / 10
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Reviews may be edited to correct grammar/spelling or remove inappropriate content. Reviews appearing to come from parties with a vested interest are not published. This information is not intended to endorse any medication and should not replace the expertise and judgment of healthcare professionals.

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