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Keytruda Maintenance Therapy: Sharing Experiences
Hello everyone,
I'm seeking insight from fellow patients who have completed treatment and are now taking Keytruda (Pembrolizumab) as maintenance therapy. I'd love to hear about your experiences, especially if you're taking Keytruda alone after completing chemotherapy.
Briefly, my background:
- Diagnosed with endometrial cancer (March 2023)
- Total hysterectomy (April 2023)
- 6 cycles of chemo (Keytruda, Pacitaxel, Carboplatin) from June to September 2023
- Clear CT scans and normal CA 125 levels (October 2023)
- Oncologist recommends continuing Keytruda alone for 2 years (completed 1 year in August 2024)
I'm hesitant to continue due to potential risks, toxicity, and high costs ($47,000 per 400mg dose). With no signs of cancer progression, I wonder if overtreatment is a concern.
Please share your experiences, thoughts, and questions. Are you on a similar treatment plan? Have you discussed alternative options with your oncologist?
Let's support each other and exchange valuable insights!
Thank you very much.
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HugInterested in more discussions like this? Go to the Gynecologic Cancers Support Group.
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One more thing …
Just returned back to work after being on leave for almost 6 months. Last two Keytuda infusions full dose (400mg) at 6 weeks schedule were really hard. It took me almost 2-3 weeks each time to recover. Now, next one is coming up & I am all stressed & scared just thinking about it. Will I feel sick this time again… if so, how will I survive at work, etc.
should do half dose @ 3 week schedule vs full dose @ 6 week schedule, etc.
question, do any of you know if 1/2 dose infusion is any easier (less side effects) compare to full dose induced side effects?
I'm curious about why the cost bothers you? Are you responsible for some of that cost? I used to take a medicine that cost $178,000 per year. It wasn't for treating cancer. I did not pay for it out of my pockets but my insurance did. I was adverse to taking it because it wasn't a cure and there was no end date.
I decided to go a different way and I'm no longer taking that drug.
But the first line cancer drugs have end dates. They have better than doing nothing cure rates and the do prolong life
Are you currently experiencing serious side effects for your treatment?
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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1 Reaction@fighter2025 I have been working with an Integrative Medicine physician at Mayo Clinic in Rochester. I will see her again in May when I return for my next gynecological surveillance exam. With the Integrative Medicine physician as part of my team (she is in the Dept. of Oncology and her training is Gynecological Cancers) I learn about the latest research and we discuss diet and lifestyle. For the most part she steers me away from supplements and recommends that I get my nutrients and minerals from my diet.
@denisestlouie has written here about her cancer care team that included a holistic physician. Since I've tagged her here I hope she will answer your question. You can also search for her Discussions on this topic by using the Search Bar at the top of this page. Also, here is one of the Discussions she posted that addresses this topic:
Next Steps:
-- https://connect.mayoclinic.org/discussion/next-steps/
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2 ReactionsI was taken off Keytruda when a tumor recurred in the same spot as before (next to the sigmoid colon). The other tumor, above the vaginal cuff did not return.
Here's how I see it:
The Ketruda was part of the 1st clinical trial with carbo & taxil paxil.
I had NED after 6 chemo treatments and we continued the Keytrude until one of the two tumors returned.
Meanwhile, I was diagnosed with COP - cryptogenic organizing pneumonia (previously called "BOOP") and it has been blamed on the Keytruda because it attacks the autoimmune system. But it can't be scientifically proven.
I am still trying to get rid of the pneumonia using prednisone. It will be over 2 years by the time I can fully taper off of the steroid, but the cancer is still gone after my 2nd clinical trial using breast cancer drugs because the tumor was determined to be uterine in nature. (Verzenio & Letrozole).
We had to stop the Verzenio because we thought it was interfering with the steroid, so now I am only on Letrazole per my prior post. No side effects.
My recent CT scan (every 12 weeks) was clear last week and the pneumonia has improved but is still not gone.
The July 25 CT will be 1 year NED for cancer, just hoping pneumonia is gone soon thereafter. The slow taper from 20mg down to 2.5 mg takes months.
I hope this is helpful information.
Lizzz
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1 ReactionI am praying for strength & courage to go thorough the treatments. Wisdom to decide the right approach at fight time. I am grateful for each sister taking time to reply to inquiries posted here. It gives me hope & strength that I need to stay strong & keep going. Thank you so much for taking time to reply back.