My Lenvima/Keytruda experience so far - please share yours

124

Comments

  • Armywife
    Armywife Member Posts: 449 Member
    dgrdalton said:

    Another slow update

    I felt so bad the 3 weeks after Keytruda #8 that I mostly sat or slept. I've been taken off Keytruda and Lenvima. It was becoming too toxic for my body and my CA-125 has more than doubled as of 9/21. I had a PET scan on 9/30 and will get results 10/5 in a televisit from oncologist. I'm feeling much better after being off the meds. I will update after I get results and new plan. 
    Stay safe ladies!

    Hugs to you, Donna

    I'm sorry you're having a rough go right now.  Praying that you will get a great plan moving forward. You inspire me always!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,006 Member
    Donna, thank you for keeping

    Donna, thank you for keeping us posted.  I think it is important for us all to know and hear what the side effects are to help us understand the unknown.  Hugs and prayers.

  • cmb
    cmb Member Posts: 898 Member
    edited October 2020 #64
    Appreciate the Updates

    Donna,

    Your dedication in keeping us updated about your experience with Keytruda and Lenvima is greatly appreciated. I hope the new plan will be less hard on your system while still effective.

  • Fridays Child
    Fridays Child Member Posts: 253 Member
    edited October 2020 #65
    dgrdalton said:

    Another slow update

    I felt so bad the 3 weeks after Keytruda #8 that I mostly sat or slept. I've been taken off Keytruda and Lenvima. It was becoming too toxic for my body and my CA-125 has more than doubled as of 9/21. I had a PET scan on 9/30 and will get results 10/5 in a televisit from oncologist. I'm feeling much better after being off the meds. I will update after I get results and new plan. 
    Stay safe ladies!

    So sorry

    So sorry to hear you've been feeling so bad.  I hope they'll find another treatment for you that will be effective with less toxicity.  Thank you for keeping us updated.

  • ConnieSW
    ConnieSW Member Posts: 1,608 Member
    edited October 2020 #66
    Dear Donna

    I am so sorry this plan isn't working and hope Monday brings you a new way forward. I also hope you have been able to get to your river. As I have said, I love picturing you there.  Nature is so restorative. 

  • bluehyacinth
    bluehyacinth Member Posts: 51 Member
    edited October 2020 #67
    Hi Donna, sorry it did not

    Hi Donna, sorry it did not work for you. It seems a lot to both be on Keytruda and Lenvima.  Perhaps consider trying Keytruda without Lenvima. I have been on Keytruda for 4 years and was never in remission, but rather got liver mets while on chemo and radiation. I also started out with extensive lvsi, both hormone and serous tumors hence stage 3CII then. Keytruda took a few motnths to start working.  I am not in remission and Keytruda is assumed to stop working at some point. I was offered Lenvima 2 years ago, but figured my quality of life would hit bottom and decided not to try it.

     

     

  • Armywife
    Armywife Member Posts: 449 Member

    Hi Donna, sorry it did not

    Hi Donna, sorry it did not work for you. It seems a lot to both be on Keytruda and Lenvima.  Perhaps consider trying Keytruda without Lenvima. I have been on Keytruda for 4 years and was never in remission, but rather got liver mets while on chemo and radiation. I also started out with extensive lvsi, both hormone and serous tumors hence stage 3CII then. Keytruda took a few motnths to start working.  I am not in remission and Keytruda is assumed to stop working at some point. I was offered Lenvima 2 years ago, but figured my quality of life would hit bottom and decided not to try it.

     

     

    BlueHyacinth

    It's so good to hear from you and to know that you are still able to tolerate Keytruda and still doing ok!  

  • dgrdalton
    dgrdalton Member Posts: 161
    edited October 2020 #69
    Final Update on this thread

    My PET results showed increased activity in lymph nodes and also new nodes and deposits in omentum and peritoneal with trace pelvic ascites. Also persistent thyroiditis. My prognosis is 6 months with no more treatment or up to 1 year with additional chemo. My husband and I decided to do more chemo, especially since cold weather is coming and we will spend most our time indoors. Hopefully I will feel well enough in the spring to enjoy nature.

    I did get some energy back after going off K/L combo. We drove to Texas 2 weeks ago and the trip was harder on me than I expected. I had some nausea and even vomiting the first night. I did enjoy a birthday lunch with family, got to visit and hug my 89 yo Mom for several days. We took a trip on the train that goes from Fort Worth to Dallas and visited the Dallas World Aquarium. My first grandson pushed me in a wheelchair so I could enjoy the day.

    So the fatigue and some stomach issues are still around, but it could be the cancer and not hangover from K/L. Monday I start Abraxane and hope it will hold back the cancer for awhile. I'm enjoying as much of each day as possible and am at peace with whatever God has for me (most of the time :-) I still have times that I think too much!)

    The ladies on this discussion board have been a tremendous help and encouragement so far. I love you all and feel good knowing you are here.

    I will not post again on this thread unless someone needs help or an answer about Keytruda/Lenvima. I will try to keep up with checking in more often.

    Donna D

  • BluebirdOne
    BluebirdOne Member Posts: 552 Member
    edited October 2020 #70
    Hugs, Donna! I wish I could give you a big hug!

    This is not good news, unfortunately, but we know that some of us have to come to terms with our prognonsis. So gratifying you are still fighting, but sad about the news. I am not a praying woman, but I think about all of our ladies all the time. Thank you for updating and I continue to wish you well.

    xxoo

    Denise 

  • Forherself
    Forherself Member Posts: 696 Member
    edited October 2020 #71
    Dear Donna

    Your post is full of your bravery and spirit.  I wish it was different news, but sometimes we don't get what we wish.  You are in my prayers every night.  I hope you stop in to say hello to us all.  

  • MAbound
    MAbound Member Posts: 1,164 Member
    edited October 2020 #72
    Dear Donna

    Dear Donna,

    Thanks for the update, I just wish that it was better news. I hope the new chemo will help to give you more and more comfortable time with your loved ones and with us. Not ready to lose you (Never!), so I'm selfishly glad that you are continuing treatment. Praying with all my heart that it helps. ((Hugs))

  • Armywife
    Armywife Member Posts: 449 Member
    edited October 2020 #73
    dgrdalton said:

    Final Update on this thread

    My PET results showed increased activity in lymph nodes and also new nodes and deposits in omentum and peritoneal with trace pelvic ascites. Also persistent thyroiditis. My prognosis is 6 months with no more treatment or up to 1 year with additional chemo. My husband and I decided to do more chemo, especially since cold weather is coming and we will spend most our time indoors. Hopefully I will feel well enough in the spring to enjoy nature.

    I did get some energy back after going off K/L combo. We drove to Texas 2 weeks ago and the trip was harder on me than I expected. I had some nausea and even vomiting the first night. I did enjoy a birthday lunch with family, got to visit and hug my 89 yo Mom for several days. We took a trip on the train that goes from Fort Worth to Dallas and visited the Dallas World Aquarium. My first grandson pushed me in a wheelchair so I could enjoy the day.

    So the fatigue and some stomach issues are still around, but it could be the cancer and not hangover from K/L. Monday I start Abraxane and hope it will hold back the cancer for awhile. I'm enjoying as much of each day as possible and am at peace with whatever God has for me (most of the time :-) I still have times that I think too much!)

    The ladies on this discussion board have been a tremendous help and encouragement so far. I love you all and feel good knowing you are here.

    I will not post again on this thread unless someone needs help or an answer about Keytruda/Lenvima. I will try to keep up with checking in more often.

    Donna D

    Donna

    I'm remembering the words of some very wise women who remind us that we are a statistic of one.  The Lord has already determined your steps, and your time will come when He's ready and not a day before that - it could be much longer than the doctors think!  

    Thank you for sharing your Keytruda journey with us and for your beautiful positive nature! So glad you enjoyed Texas and especially your mom.  My parents are 88, and I sure do miss seeing them as much as I'd like - with covid their retirement village hasn't allowed visitors.

    Blessings to you - praying for lots more time and chemo that does amazing work this winter.  

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited October 2020 #74
    Donna, thank you for giving

    Donna, thank you for giving us an update. I so wish it was better news! I'm with MA, I'm selfishly glad you decided to continue treatment. I hope it is easier on you and provides a way longer life than is being predicted. I know you will take advantage of every minute of every day. 

    Love and Hugs,

    Cindi

  • cmb
    cmb Member Posts: 898 Member
    edited October 2020 #75
    Donna,

    Donna,

    Your faithful posts about Lenvima/Keytruda are a wonderful resource for anyone considering that treatment. I'm so sorry that it wasn't effective for you.

    But I'm glad that you were able to spend time with family recently and that you have plans for a peaceful fall/winter. I hope you can take many walks on the trails by your house during the coming months as I know how much you love those.

    I also hope that you'll consider palliative care during this time as well. Not to be confused with hospice, palliative care provides relief from the symptoms and physical and mental stress of a serious or life-limiting illness. Palliative care can be pursued at diagnosis, during curative treatment and follow-up, and at the end of life. So you can still take Abraxane or other treatment while receiving palliative care. However, the additional services from palliative care may help you to better enjoy this period with your husband.

  • Maxster
    Maxster Member Posts: 101 Member
    edited October 2020 #76
    Thank you!

    Donna,

    Thank you for your wonderful and uplifting posts.  I am sorry to learn of the choices laid before you but we cannot see the future.  I am always hopeful.  I am glad you were able to spend time with family.  I admire your strength so much.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,006 Member
    edited October 2020 #77
    Donna, thank you for sharing

    Donna, thank you for sharing this part of the journey with us, and for those that join in the future, in one chronicled thread.  You have taught us much.

    We are here for you whenever you need us as you move forward.   

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited October 2020 #78
    K/L

    Donna

    Sorry about your experience on K/L.   I found it very toxic also. I ended up in the hospital. But I'm tolerating a reduced dose of 10 L. Still significant nausea and diarrhea but it's holding down the significant ascites I was experiencing. Hopefully this reduced dose helps but no one knows. 

  • Fridays Child
    Fridays Child Member Posts: 253 Member
    edited December 2020 #79
    Best wishes, Donna

    So sorry to hear the news and hope that you will have much more time than the doctors currently estimate, and that you will feel much better on the new treatment. Praying for you!

  • RLynne
    RLynne Member Posts: 7 Member
    I have just started Keytruda

    I have just started Keytruda (one infusion every 3 weeks) and 14 mg Lenvima daily. Started Lenvima 2 days before first infusion. Headache started day of first infusion for 48 hours. Dr had me stop Lenvima till headache gone. 2 days later started Lenvima again. So far so good. But I do have some muscle and joint pain that I didn't have before. This seemed like a good thread to document my journey with this treatment. And I look forward to following others ?

  • BluebirdOne
    BluebirdOne Member Posts: 552 Member
    Donna, how have you been doing?

    I hope you are doing ok. We have not seen your smiling face for a while. 

    xxoo

    Denise