Keytruda/Lenvima side effects

mdc2012
mdc2012 Member Posts: 3 Member
edited March 25 in Kidney Cancer #1

Hello group. I've been dealing with my kidney cancer diagnosis for 11 years now. I've had surgeries, radiation, immunotherapy, you name it over the years to knock the disease back, and I've handled it all pretty well.

Last fall my doctor started me on a combination of a Keytruda infusion, every 6 weeks now, and a daily dose of Lenvima (lenvatinib). After three months a CT scan revealed progress, it's working!

My problem is side effects, specifically foot pain. Walking, good long walks, has been my therapy over the years, even before the cancer came on the scene. The soles of my feet hurt so bad now that walking long distances is out of the question. Does anyone have any experience with reducing the pain? My oncologist said we can reduce the dose, but I'm reluctant to do that, it's doing the job.

On the bright side, I've been reading a whole lot of good books these days!

Comments

  • Deanie0916
    Deanie0916 Member Posts: 628 Member
    #2

    Hi I don't have any good advice, I haven't dealt with hfs yet. I admire your 11 year journey and hope you get some relief so you can walk again. I've heard some creams might help? Hope someone else knows. All the best to you. 🙏

  • Lodowick
    Lodowick Member Posts: 6 Member
    #3
    https://csn.cancer.org/discussion/326187/keytruda-lenvima-side-effects

    mdc2012 wrote: "The soles of my feet hurt so bad now that walking long distances is out of the question."

    I know you're seeking input regarding the new meds you're on, but if you'll excuse me I have a different question relating to the facts you've described. If you do know, could you tell how the kidney cancer is connected with the pain in the soles of your feet? My question isn't idle curiosity. I too, another kidney cancer patient, have pain, hardening and cracking in the soles of my feet, though I don't ever walk barefoot. If you do understand the kidney/footsole connection, I'd very much appreciate your describing it here. Unfortunately, I'm a very recent kidney cancer patient (diagnosed 11/30/22; radical nephrectomy 1/9/23) and have no experience with the medications you've named, so I can't help answer your own questions. The best of luck with your own search!

  • mdc2012
    mdc2012 Member Posts: 3 Member
    #4
    https://csn.cancer.org/discussion/comment/1703521#Comment_1703521

    The pain in the soles of my feet is one of the side effects of the Keytruda/Lenvima regimen I'm on. If I stopped taking them the pain would go away but the cancer would then revive.

    I don't know of any connection between kidney cancer and painful feet. Sounds like a good question to bring up at your next appointment.

    Good luck with your treatment plan, the advancements made over the last few years give me hope, and every year something else is learned.

    Stick with whatever treatment the doctors suggest, but more importantly live your life.

    Good luck with the foot pain

  • eug91
    eug91 Member Posts: 471 Member
    #5

    mdc2012-

    If you haven't already, check out the forum at smartpatients. While I have no experience with your treatment, I know they discuss the foot side effects over there and you could find some useful tips there.

  • scabledog
    scabledog Member Posts: 17 Member
    #6

    Sorry to hear you are having trouble with side effects of the Keytruda/Lenvima. I started this same cocktail about 7 weeks ago. I do 14mg Lenvima daily and the Keytruda every 3 weeks for stage 4 kidney cancer. So far doing pretty well with it except sore/sensitive mouth... use to love spicy foods like hot chicken wings... and diarrhea. Even brushing teeth sometimes feels like I'm drinking hot sauce. No sore feet yet, but perhaps a coming attraction. I have a friend doing a similar cocktail of Keytruda/Inlyta and they are having sore feet issues. She attributes it to the meds, but like you the meds are working and hates to stop or reduce anything. Hopefully you will find some way to limit the pain and get back to walking, but I am hopeful I get similar good results as you are getting with the cancer. If my friend finds any ways to help her sore feet I'll come back and pass it along.

  • DorisG
    DorisG Member Posts: 2 Member
    #7

    Hi, I have the same problem with my feet. I used to be an avid walker, now it is very painful. Also have developed very high blood pressure, with increased dose of BP meds which makes my ankles swell and burn.

    had a nephrectomy and was cancer free for 13 years, then a tumor developed near my lymph nodes (where the kidney was removed), the new tumor and nodes were removed. A few years later tumors appeared on my pancreas. Oncology put me on Sutent for 3 years, which gave a 1 year remission. My oncologist now wants me to take immunotherapy. I started out with just Opdivo. But the tumor keeps growing. I have been on Cabometyx for about half a year with bad side effects. Now, since January I’m taking Lenvima with the side effects as described above. Also have chest pain and sore mouth.

    anyone also having same experience and suggestions?

  • rcole
    rcole Member Posts: 15 Member
    #8

    hi every one i too are on Lenvima but i take everolimus with it i too have pain in feet i thought it was from diabetes but after reading this i'm not sure now . I had my left kidney removed about two years ago RCC they started me on Keytruda didn't have any problems with my feet then so i think it is from the Lenvima any thoughts from any one

  • B54marcus
    B54marcus Member Posts: 1 Member
    #9

    Hi, I was put on Keytruda and 20mg Lenvima in April last year to reduce size of 14cm tumor. The only side effects I experienced were painful feet and high blood pressure. The pain was intermittent and sometimes on left foot and after couple weeks switched to right foot. I was running every day so running sometimes cut short when pain was bad. Tumor was down to 5cm in December and no longer any signs of cancer in lymph nodes, so had nephrectomy in January. I'm now only on keytruda and no pain in feet at all.

  • DorisG
    DorisG Member Posts: 2 Member
    #10

    Thank you, 854Marcus, I’m glad I’m not alone experiencing it. I don’t run, but I walk in a local park with a friend, it takes my mind off. The foot problem seems to be a Lenvima side effect, even listed on meds website and paperwork, so is high BP. I paused Lenvima for a few days, feeling better. My next MRI is in April and I hope suffering the side effects were worth it!

    Keep your experiences coming.

    BTW my nephrectomy was in 2004 and I had no recurrence of the kidney cancer until 2014. Been fighting it ever since……

    thank you

  • Susanms
    Susanms Member Posts: 5 Member
    #11
    https://csn.cancer.org/discussion/comment/1713596#Comment_1713596

    I hate to hear of your stuggles with Lenvima side effects they truly affect quality of life. Dr. finally put me on a round of steroids to deal with all over body inflamation. I'm on 18mg lenvima a day and I'm experiencing lots of side effects. I have yet to find remedies for any of them except steroids and HBP meds.I had foot issues when I was on Cabometyx(sp?)that subsided on Lenvima. None of my Dr.s would say it was from the med. So frustrating. I used lambs skin on the soles of my feet and always wore soft padded slippers..helped a little. I wish I could be helpful. It just helps to connect with others who are going through the same stuff.

    Sms

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