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!"

Jump to this post

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

REPLY
madieblue | @madieblue | 6 days ago

I had the similar situation:
2021- endometrial ca stage 1B
2021- total hysterectomy, no chemo, 5 rounds of Brachytherapy
2021 December - NED
2022 May - same cancer returned
2022 June - abdominal debulking
2022 August- December started 6 rounds of chemo (Carbo, Taxol+ Keytruda)
2023 January - Maintenance Keytruda every 6 weeks 400. Currently still on Keytruda; e March will be my 23 rounds of Keytruda.
All my labs are great, CT shows NED, the CA-125 normal, no side effects so far.
I'm wondering if anyone been on Keytruda as long as I am?

REPLY
ccwill | @ccwill | 6 days ago

Hello @madieblue , I'm thrilled to hear you're doing well on Keytruda. I personally stopped treatment after 14 rounds due to adverse effects, including high blood pressure, eye pain and blurriness, elevated glucose levels, prediabetes, obesity, inflammation, incontinence, skin rashes, bowel issues, and joint pain (early signs osteoporosis).

Although I showed no evidence of disease since surgery, and my CA 125 marker was within normal range after the first round of chemo, I felt my oncologist was dismissing my concerns about these symptoms. Seeking a second opinion revealed that there's no data supporting treatment beyond a year, except for lung or melanoma cases.

However, based on FDA and Keytruda.com guidelines, I understood that treatment can continue until disease progression, and the 24-month mark doesn't necessarily mean stopping at or extending beyond that point: 'The recommended pembrolizumab dose is 200 mg every 3 weeks or 400 mg every 6 weeks until disease progression, unacceptable toxicity, or up to 24 months.'

Please continue to fall, maintain the positivity you have, and advocate for yourself.

Stay well and best regards!

REPLY
1 reply
madieblue | @madieblue | 6 days ago
In reply to @ccwill "Hello @madieblue , I'm thrilled to hear you're doing well on Keytruda. I personally stopped treatment..." + (show)
@ccwill

Hello @madieblue , I'm thrilled to hear you're doing well on Keytruda. I personally stopped treatment after 14 rounds due to adverse effects, including high blood pressure, eye pain and blurriness, elevated glucose levels, prediabetes, obesity, inflammation, incontinence, skin rashes, bowel issues, and joint pain (early signs osteoporosis).

Although I showed no evidence of disease since surgery, and my CA 125 marker was within normal range after the first round of chemo, I felt my oncologist was dismissing my concerns about these symptoms. Seeking a second opinion revealed that there's no data supporting treatment beyond a year, except for lung or melanoma cases.

However, based on FDA and Keytruda.com guidelines, I understood that treatment can continue until disease progression, and the 24-month mark doesn't necessarily mean stopping at or extending beyond that point: 'The recommended pembrolizumab dose is 200 mg every 3 weeks or 400 mg every 6 weeks until disease progression, unacceptable toxicity, or up to 24 months.'

Please continue to fall, maintain the positivity you have, and advocate for yourself.

Stay well and best regards!

Jump to this post

Thank you ccwill!
I'm trying to be positive but sometimes I'm questioning if it's ok to continue with Keytruda, and not having a confirmed answer from my oncologist Doctor. I was told there are no studies to see the longer effect. And that's my concern. He said "it's working well for you so when do we stop?" And I don't know. Sometimes i feel Keytruda helped me stay alive and im afraid to go off from it, but is it safe to continue? I still looking for an answer. Im just scared to stop it 😢

REPLY
ccwill | @ccwill | 5 days ago

Hello @madieblue, I want to encourage you to seek a second opinion to alleviate your concerns. Are you experiencing any stiffness in your body? If so, this is due to inflammation, which could cause cardiovascular issues. According to FDA guidelines, treatment typically continues until disease progression or unacceptable toxicity. Since you're NED (No Evidence of Disease) and progression-free, with successful treatment outcomes, your current path may be effective and enough if you've had two years of treatment.

I want to remind you that while medicine is a treatment, it's ultimately God who heals. Trust in Him and don't let fear take over. In addition to your medical treatment, consider lifestyle changes like reducing sugar and carbs, increasing nutrients, exercising regularly, and getting enough sleep. Best regards! 💞

REPLY
1 reply
madieblue | @madieblue | 5 days ago
In reply to @ccwill "Hello @madieblue, I want to encourage you to seek a second opinion to alleviate your concerns...." + (show)
@ccwill

Hello @madieblue, I want to encourage you to seek a second opinion to alleviate your concerns. Are you experiencing any stiffness in your body? If so, this is due to inflammation, which could cause cardiovascular issues. According to FDA guidelines, treatment typically continues until disease progression or unacceptable toxicity. Since you're NED (No Evidence of Disease) and progression-free, with successful treatment outcomes, your current path may be effective and enough if you've had two years of treatment.

I want to remind you that while medicine is a treatment, it's ultimately God who heals. Trust in Him and don't let fear take over. In addition to your medical treatment, consider lifestyle changes like reducing sugar and carbs, increasing nutrients, exercising regularly, and getting enough sleep. Best regards! 💞

Jump to this post

Thank you for your kind words. I needed it 🤗❤️🙏🏼

REPLY
fighter2025 | @fighter2025 | 5 days ago

@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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1 reply
fighter2025 | @fighter2025 | 5 days ago

Also, would like to know if there are any holistic / integrative healthcare regimen you all are doing to ward off the side effects of conventional treatment?

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