1. < Gynecologic Cancers

Keytruda Maintenance Therapy: Sharing Experiences

Posted by ccwill @ccwill, Aug 13, 2024

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.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

annalena | @annalena | Aug 16, 2024

Hi @ccwill
I have a similar initial series of diagnoses & treatment:
- Diagnosed with endometrial cancer (December 2021)
- Total hysterectomy (January 2022)
- 6 cycles of chemo (Pacitaxel, Carboplatin) from October 2022 to February 2023
- This was followed by 5 weeks of external radiation in May/June 2023 as a vaginal tumor persisted.

In November 2023, it was determined the tumor was still present. Immunotherapy with Keytruda was offered as a treatment. It was explained that at the time I began chemotherapy, the endometrial cancer study had not yet been published, or I would have also received Keytruda at the same time as chemo.

From January 2024 - May 2024, I had 5 Keytruda treatments. After the first 3 treatments, I experienced horrible side effects with my eye sight - blurred vision, sensitivity to sunlight, etc.: https://connect.mayoclinic.org/discussion/keytruda-causing-eye-side-effects/?pg=1#comment-1040122. Due to that, I skipped the next two treatments.

I had two more treatments in May, after which I had an equally horrible inflammation side effect that included neuropathy in my right hand and difficulty walking, for which they prescribed steroids. And they halted the immunotherapy. After a scan & physical exam, it was determined I was cancer-free.

As for a maintenance plan, I have another physical exam scheduled in 3 months. My oncologist stated that if the cancer returns, they may again offer immunotherapy with Keytruda as the treatment. But other than that, a maintenance plan with Keytruda was not offered or discussed. Perhaps due to my side effects or possibly just different approaches? My limited understanding of immunotherapy is that it is training your own cells to fight back against the cancer and that once their memory returns as to how to do that, they usually keep on fighting. That's my hope along with my intention: "I'm in perfect health!"

REPLY
1 reply
ccwill | @ccwill | Aug 19, 2024
In reply to @annalena "Hi @ccwill I have a similar initial series of diagnoses & treatment: - Diagnosed with endometrial..." + (show)
@annalena

Hi @ccwill
I have a similar initial series of diagnoses & treatment:
- Diagnosed with endometrial cancer (December 2021)
- Total hysterectomy (January 2022)
- 6 cycles of chemo (Pacitaxel, Carboplatin) from October 2022 to February 2023
- This was followed by 5 weeks of external radiation in May/June 2023 as a vaginal tumor persisted.

In November 2023, it was determined the tumor was still present. Immunotherapy with Keytruda was offered as a treatment. It was explained that at the time I began chemotherapy, the endometrial cancer study had not yet been published, or I would have also received Keytruda at the same time as chemo.

From January 2024 - May 2024, I had 5 Keytruda treatments. After the first 3 treatments, I experienced horrible side effects with my eye sight - blurred vision, sensitivity to sunlight, etc.: https://connect.mayoclinic.org/discussion/keytruda-causing-eye-side-effects/?pg=1#comment-1040122. Due to that, I skipped the next two treatments.

I had two more treatments in May, after which I had an equally horrible inflammation side effect that included neuropathy in my right hand and difficulty walking, for which they prescribed steroids. And they halted the immunotherapy. After a scan & physical exam, it was determined I was cancer-free.

As for a maintenance plan, I have another physical exam scheduled in 3 months. My oncologist stated that if the cancer returns, they may again offer immunotherapy with Keytruda as the treatment. But other than that, a maintenance plan with Keytruda was not offered or discussed. Perhaps due to my side effects or possibly just different approaches? My limited understanding of immunotherapy is that it is training your own cells to fight back against the cancer and that once their memory returns as to how to do that, they usually keep on fighting. That's my hope along with my intention: "I'm in perfect health!"

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Dear @annalena,

Thank you so much for sharing your detailed journey with me! I'm grateful for your willingness to connect and support each other through our similar experiences.

Your resilience and determination inspire me. I'm thrilled to hear that you're now cancer-free!

I completely understand the challenging side effects you faced during Keytruda treatment. I've experienced similar issues, and it's comforting to know we're not alone.

Your questions about maintenance plans resonate with me. I'm curious to learn more about your upcoming appointments and any potential long-term plans.

Your understanding of immunotherapy aligns with mine – empowering our cells to fight cancer and retaining that memory. I love your affirmation: "I'm in perfect health!"

Let's continue to support each other and share updates. You're not alone in this journey!

Warm regards,
CC

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