My Lenvima/Keytruda experience so far - please share yours

135

Comments

  • Donna Faye
    Donna Faye Member Posts: 427
    So good to hear

    CONGRATS!  Wonderful!

  • dgrdalton
    dgrdalton Member Posts: 161
    edited July 2020 #43
    Thank you for all the kind

    Thank you for all the kind words! I did have a few rough days last week, but the past several days have been good ones! Going to keep on keeping on and pray for NED!

    Stay safe ladies!

  • Armywife
    Armywife Member Posts: 449 Member
    edited July 2020 #44
    dgrdalton said:

    Thank you for all the kind

    Thank you for all the kind words! I did have a few rough days last week, but the past several days have been good ones! Going to keep on keeping on and pray for NED!

    Stay safe ladies!

    Yaay!

    What a blessing!  I'm so happy for you.  

  • dgrdalton
    dgrdalton Member Posts: 161
    Keytruda #6

    My husband and I were in St. Louis Sunday for labs and Monday for an appointment with my oncologist and an infusion. Lab work showed that I have thyroiditis causing hyperthyroidism, but they did go ahead and give me the infusion. She prescribed medication that should slow down the release of hormones from my thyroid. She thinks the Keytruda is most likely causing it, but it could be something else. I’m still very fatigued and have lost some weight, but still have a few more left that I wouldn't mind losing! Diarrhea has gotten worse and my right ankle is swollen and tender, but not enough to concern oncologist much.

    Last week my husband put a new starter on the 4-wheeler so I can ride it on the trail in the woods to the river. I got to go twice and sit by the river. It really lifts my spirit! 

  • ConnieSW
    ConnieSW Member Posts: 1,608 Member
    dgrdalton said:

    Keytruda #6

    My husband and I were in St. Louis Sunday for labs and Monday for an appointment with my oncologist and an infusion. Lab work showed that I have thyroiditis causing hyperthyroidism, but they did go ahead and give me the infusion. She prescribed medication that should slow down the release of hormones from my thyroid. She thinks the Keytruda is most likely causing it, but it could be something else. I’m still very fatigued and have lost some weight, but still have a few more left that I wouldn't mind losing! Diarrhea has gotten worse and my right ankle is swollen and tender, but not enough to concern oncologist much.

    Last week my husband put a new starter on the 4-wheeler so I can ride it on the trail in the woods to the river. I got to go twice and sit by the river. It really lifts my spirit! 

    I love

    Picturing you doing that!

  • MAbound
    MAbound Member Posts: 1,164 Member
    edited July 2020 #47
    Excellent Therapy!

    I think we could all enjoy an excursion like that in these times! I'm a houseplant to begin with, but even I'm getting a bit stir crazy!! 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,010 Member
    edited July 2020 #48
    Thank you for sharing the

    Thank you for sharing the update on your treatment.  

    I agree with the other ladies, the image of you out and trolling around on your 4-wheeler brings a smile to my face and heart.  Enjoy!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    I'm glad you were able to get

    I'm glad you were able to get your infusion. Hopefully, the new medication will help not only your thyroid, but your fatigue as well. Love the mental picture of seeing you driving the heck out of the 4 wheeler to get to the river! Take care of yourself and thanks for giving us your latest update!

    Love and Hugs,

    Cindi

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,010 Member
    edited August 2020 #50
    How are you doing, Donna?

    How are you doing, Donna?

  • dgrdalton
    dgrdalton Member Posts: 161
    Slow again with the update. A

    Slow again with the update. A lot has been going on. My thyroid has switched a tad toward the hypo side. My oncologist says it may jump around some. So I worried too much about something I can't control. I think I've gotten to the point that I've tried to be positive for everyone else and now I am feeling more stressed. Fortunately the weather has allowed me more time in the woods to pray and meditate.

    My youngest daughter, husband and now 5 yr old granddaughter were visiting last week (before infusion.) The oldest daughter caught covid-19 from church and they were quarantined. She is fever free for several days now, but her husband has symptoms and is waiting on test results. They live 4 miles away with 2 of my granddaughters ages 7 & 9.  The girls aren't sick, but are having to quarantine now for 3 weeks.

    Keytruda/Lenvima is going about the same with fatigue and diarrhea being the biggest issues. I got a med that is stronger than Imodium, so that has helped. My home pharmacy just keeps growing. lol  Some days I think too much about how much longer I will need to be in treatment, but living in the present is much more pleasant, so trying to stay in the here and now! I am so blessed compared to some of the ladies in treatment for many years. They are the strong ones!

    Hope everyone is staying safe!

    Donna D

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited August 2020 #52
    Donna, Thanks for your update

    Donna, Thanks for your update. Sometimes, you need to just let yourself feel. Please make yourself the priority. You need to be number 1. 

    Glad the meds are helping with your stomach issues. Hopefully, that will also help with your fatigue.

    Please come back and let us know how you are doing when you feel up to it.

    Love and Hugs,

    Cindi

    ps - I hope your family gets through Covid with minimal issues! Scary stuff!

  • Armywife
    Armywife Member Posts: 449 Member
    edited August 2020 #53
    dgrdalton said:

    Slow again with the update. A

    Slow again with the update. A lot has been going on. My thyroid has switched a tad toward the hypo side. My oncologist says it may jump around some. So I worried too much about something I can't control. I think I've gotten to the point that I've tried to be positive for everyone else and now I am feeling more stressed. Fortunately the weather has allowed me more time in the woods to pray and meditate.

    My youngest daughter, husband and now 5 yr old granddaughter were visiting last week (before infusion.) The oldest daughter caught covid-19 from church and they were quarantined. She is fever free for several days now, but her husband has symptoms and is waiting on test results. They live 4 miles away with 2 of my granddaughters ages 7 & 9.  The girls aren't sick, but are having to quarantine now for 3 weeks.

    Keytruda/Lenvima is going about the same with fatigue and diarrhea being the biggest issues. I got a med that is stronger than Imodium, so that has helped. My home pharmacy just keeps growing. lol  Some days I think too much about how much longer I will need to be in treatment, but living in the present is much more pleasant, so trying to stay in the here and now! I am so blessed compared to some of the ladies in treatment for many years. They are the strong ones!

    Hope everyone is staying safe!

    Donna D

    Lots going on!

    Very glad to hear you got some good meds to help with the tummy issues.  And very sorry to hear the Covid has come too close for comfort!  It's always good to hear from you and to know you are doing well.  Thanks for updating!

     

  • dgrdalton
    dgrdalton Member Posts: 161
    edited September 2020 #54
    Keytruda #8 infusion update

    The infusion went well. My oncologist is a little concerned about kidney function declining, but just asked if I drink plenty of water; which I do. My hyperthyroid has switched over to hypothyroidism, so I am on a new med, levothyroxine at a small dose. For a few days after the infusion, I sleep a lot and then start getting my energy back. I did quite a bit of meditating at the riverside the week before infusion. I believe I'm finally accepting my new normal and am much happier than I was for a couple of weeks. My daughter and family are over Covid and quarantine which really lifted my spirit! Thank you ladies for being here.

    Donna D

  • Armywife
    Armywife Member Posts: 449 Member
    edited September 2020 #55
    dgrdalton said:

    Keytruda #8 infusion update

    The infusion went well. My oncologist is a little concerned about kidney function declining, but just asked if I drink plenty of water; which I do. My hyperthyroid has switched over to hypothyroidism, so I am on a new med, levothyroxine at a small dose. For a few days after the infusion, I sleep a lot and then start getting my energy back. I did quite a bit of meditating at the riverside the week before infusion. I believe I'm finally accepting my new normal and am much happier than I was for a couple of weeks. My daughter and family are over Covid and quarantine which really lifted my spirit! Thank you ladies for being here.

    Donna D

    Thank YOu

    You are so faithful to keep us updated, and you give me such hope!  My thyroid keeps flopping back and forth too!  So odd!

  • ConnieSW
    ConnieSW Member Posts: 1,608 Member
    edited September 2020 #56
    Family

    Donna, I have been wondering how they were doing. I am so glad they have recovered.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    dgrdalton said:

    Keytruda #8 infusion update

    The infusion went well. My oncologist is a little concerned about kidney function declining, but just asked if I drink plenty of water; which I do. My hyperthyroid has switched over to hypothyroidism, so I am on a new med, levothyroxine at a small dose. For a few days after the infusion, I sleep a lot and then start getting my energy back. I did quite a bit of meditating at the riverside the week before infusion. I believe I'm finally accepting my new normal and am much happier than I was for a couple of weeks. My daughter and family are over Covid and quarantine which really lifted my spirit! Thank you ladies for being here.

    Donna D

    I’m in your club

    Started this on Monday. Will keep you posted. 

  • Love23
    Love23 Member Posts: 8 Member
    edited September 2020 #58
    dgrdalton said:

    Keytruda #8 infusion update

    The infusion went well. My oncologist is a little concerned about kidney function declining, but just asked if I drink plenty of water; which I do. My hyperthyroid has switched over to hypothyroidism, so I am on a new med, levothyroxine at a small dose. For a few days after the infusion, I sleep a lot and then start getting my energy back. I did quite a bit of meditating at the riverside the week before infusion. I believe I'm finally accepting my new normal and am much happier than I was for a couple of weeks. My daughter and family are over Covid and quarantine which really lifted my spirit! Thank you ladies for being here.

    Donna D

    Thank you for your updates!

    Thank you for your updates! my mom is still on keytruda/Lenvima. She has been on it since April 2020, and has some issues with pain, short term memories and complains of head aches & high blood pressure. Still believing God & Trusting God for her. Thanks for updating us!

  • IzzyF
    IzzyF Member Posts: 1
    edited September 2020 #59
    dgrdalton said:

    Thank you for all the kind

    Thank you for all the kind words! I did have a few rough days last week, but the past several days have been good ones! Going to keep on keeping on and pray for NED!

    Stay safe ladies!

    Happy you are having good results!

    Good to hear. I will most likely be starting this drug combo soon. I have a lot of reservations but I'm feeling better reading your posts. I'm happy for you! Thank you for your posts. Wishing you the best.

  • dgrdalton
    dgrdalton Member Posts: 161
    edited October 2020 #60
    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!

  • Donna Faye
    Donna Faye Member Posts: 427
    edited October 2020 #61
    From one Donna to Another

    Donna, I want to thank you for keeping all of us abreast of your experience with the L/K regime. I am so sorry it has taken so much out of you but hope you are already feeling some better. Little Annie did not tolerate it very well either. I think my oncologist is going to offer it to me again Tuesday as she said the Megace/tamoxifen did not seem to be doing its job. Your excellent reporting has helped me make my decision. Thank you so much.