Experience with Keytruda/Lenvima?

MJS19
MJS19 Member Posts: 47 Member
edited February 23 in Uterine/Endometrial Cancer #1

I am trying to decide which regimen, among three of four choices, to try. The first best would be another carbo/taxol, but I am unwilling to lose my hair again. The second best choice -- medically best, I mean -- would be Keytruda/Lenvima. It seems like most posts about that combination have been pretty dire in terms of the side effects. My gyn/onc, who I trust absolutely, says that recently they changed how they dose the Lenvima and start at a much lower does and gradually build up, and that has made an enormous difference for his patients.

I read contradictory information on credible websites -- university cancer centers, pharma side effect site, etc. -- about whether either of these drugs, or these drugs in combination, can cause hair loss.

I would be grateful for any information women taking these drugs can share.

Thanks!

Comments

  • Blkbrd
    Blkbrd Member Posts: 3 Member

    I did the keytruda with the taxol. I found the keytruda to be very helpful in terms of reducing the mass. I didn't have any horrible side effects like it reads. I had a few. I have stage lV cervical. I had a very large mass that spread to most of my lower parts. I felt almost back to normal for a good many months during treatment. The scans showed considerable reduction. I have an oncologist that I trust and that helps. I hope your treatment has positive effects and limited side effects. I will pray they do just that.

  • MJS19
    MJS19 Member Posts: 47 Member

    Thank you for the information and good wishes. The genetics of my cancer are such that there is no benefit from Keytruda alone, without the Lenvima. I understand that Keytruda is much easier to tolerate than Lenvima. May I ask if you experienced hair loss of any sort from Keytruda?

    Thank you again for sharing your experience. I hope you are continuing to do well.

    Warm wishes.

  • MoeKay
    MoeKay Member Posts: 492 Member

    My childhood friend started out on Keytruda/Lenvima in 2020, shortly after the drug combination was approved by the FDA for endometrial cancer. She was diagnosed in 2017 and was on several other treatment regimens prior to starting Keytruda/Lenvima, none of which put her cancer into remission. My friend was started on 14 mg. of Lenvima, which was reduced to 10 mg., and then finally to 4 mg., due to the extreme effect it had on her blood pressure. When her blood pressure continued to be unmanageable despite the dose reductions, her oncologist discontinued the Lenvima and my friend remained on Keytruda alone. She was on Keytruda for a total of three years, finishing up this past summer. For the past couple of years, my friend has had no evidence of disease. She was originally diagnosed with stage 4, grade 3, adenocarcinoma in 2017.

    My friend never lost her hair while on Keytruda/Lenvima.

    Best of luck to you!

  • Giana23
    Giana23 Member Posts: 13 Member

    I had my 2nd round of (six) chemo last Thursday with pacitoxal and carboplatin. I was supposed to also start Keytruda/pembro that day, but didn't because it didn't get ordered in time? I'll have it for the next 4 chemo cycles (every three weeks). My gyn onc is also talking about Keytruda becoming an every 6 week infusion after the chemo for a long time. I'm interested in hearing other experiences too. I am 3IIc and serous carcinoma.

  • calj
    calj Member Posts: 7 Member

    Hello - I'm new to this forum. I was diagnosed with Stage 4B uterine papillary serous carcinoma in Aug 2017. I had a variety of surgeries, 2 chemos, targeted radiation from 8/2017 - 12/2020. I was on Keytruda/Lenvima for ~14 months, 7/2021 - 9/2022. I did not lose my hair.

    My experience with other side effects was similar to MoeKay's friend. My doc started me on 14 mg and had to be reduced to 8 because of serious diarrhea side effects. It also gave me high blood pressure but it was managed with medication. Keytruda didn't bother me at all (or not enough to notice too much).

    My doc ended my treatment in 9/2022 because scans showed cancer had metastasized to adrenal gland. Surgery removed it and I've been NED ever since.

    I hope this info helps.

    Sending warm hugs and healing light!

  • MJS19
    MJS19 Member Posts: 47 Member

    Thank you for sharing your experience with K/L. I'm glad you are doing so well. I decided against that regimen based on the experience of most of my oncologist's patients with daily fatigue. I have an intense job that demands a lot of physical energy, so I went with chemo again.

    Thanks again for taking the time to respond.

    Warm wishes for continued success.

  • Giana23
    Giana23 Member Posts: 13 Member

    Thank you so much for sharing your experience! I very encouraged by what you had to say.

  • calj
    calj Member Posts: 7 Member

    Completely understand. Because I was fortunate enough to be retired at the time (and now) of my dx, I really didn't need to consider daily fatigue. Though I never felt the need to take a daily nap, my overall physical & mental energy was reduced, on average, ~20%.