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← Return to Keytruda Maintenance Therapy: Sharing Experiences
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Keytruda Maintenance Therapy: Sharing Experiences
Gynecologic Cancers | Last Active: 5 days ago | Replies (30)Comment receiving replies
@ccwill
I have similar story.
- Oct 2020, initial (accidental) diagnosis of endometrial cancer.
- Nov 2020 full hysterectomy. Path reports all clear with it being just initial stage & being local. Stage 1A. No follow-up treatment.
- June 2024, routine exam, vaginal skin tag spotted followed by CT scan for seeing presence of lung nodules. Follow-up biopsy confirming match with 2020 path tissues.
- sept - Dec, 2024, 6 rounds of chemo (carbo + Texol + Keytuda).
- Jan, 2025 Keytruda alone as maintenance dose at 6 weeks intervals.
So far has 2 treatments & they have been absolutely hard on me. Hearing. Blurry eyes (from chemo days continuing), fatigue, bone muscle pain, memory issue, back pain. Neuropath, you name it & I am feeling it. Scared from next upcoming treatment & not sure if I should try 1/2 dose at 3 weeks mark or full dose at 6 weeks.
- need to work for health insurance purpose but blurry eyes are concern. Unable to drive with confidence to even 1 block away pharmacy to pick up meds.
- now crippled with fatigue where totally healthy, asymptomatic & energetic 6 months ago.
- oncologist seems to dismiss my concerns too. Feeling lost on what to do next. Open to suggestions & grateful for all those sharing their experiences.
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Replies to "@ccwill I have similar story. - Oct 2020, initial (accidental) diagnosis of endometrial cancer. - Nov..."
Hello @fighter2025
Thank you so much for reaching out and my apologizes for the delay. I'm glad you're here and willing to share your experience. Has your treatment been successful so far in terms reducing the tumor or CA125 marker?
My biggest concern with Keytruda as a maintenance drug was its toxicity, which caused inflammation and that led to stiffness and pain. I also suspect that it contributed to osteoporosis in my right shoulder, hip, and knees, which is why I limited my maintenance rounds to 8. I had all of the symptoms you're experiencing, and after considering the efficacy of my initial 6 rounds with carbo and taxol, and getting a second opinion, I decided to stop Ketruda after 14 rounds total. In my experience, the biggest side effect of Keytruda is inflammation, which can also increase the risk of cardiovascular disease. To mitigate the dreadful toxicity of poisons, I highly recommend drinking plenty of water (at least 64 oz/day) to help flush out the drug. Think of it as your antidote.
Additionally, try to stay active - even a 30-minute walk after meals can help. Personally, I'm working on losing weight and eating nutrient-rich foods, as obesity is a major risk factor for my type of cancer. I take a daily supplement, MyKind, to support my health.
Overall, listen to your body and it's okay to push back and ask for a break from the drug if your markers are normal or there's no evidence of the disease, so you can feel better, stronger enough to continue. Your oncologist will frown about this but be sure your blood work shows that your kidneys and liver are performing well and look out for any strange increases in your blood pressure and glucose levels.
I hope sharing my experience is helpful to you.
Praying you'll be less fatigued, happier and healthier soon!
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I'm so sorry you have a hard time with Keytruda. I had blurry vision after two years being on maintenance Keytruda every 6 weeks. I received an Eyelea eye injection and in a week I got my vision back. It supposed to be every three month but I only needed one time. Please see an ophthalmologist! Help us out there. You are not alone.
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