My Lenvima/Keytruda experience so far - please share yours

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Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Great news, Donna! Thanks for

    Great news, Donna! Thanks for keeping us posted.

    Love and Hugs,

    Cindi

  • jjtrim
    jjtrim Member Posts: 27
    edited May 2020 #23
    dgrdalton said:

    Had Keytruda infusion #3 yesterday

    My CA-125 went down from 45.3 to 37.3 which is good news! I will have a PET scan in about 3 weeks to see if progress is being made with killing the cancer. Side effects are about the same, just the fatigue seems to get a little worse every day. So far it's not been as I had imagined it might be. I'm still on 14 mg Lenvima. 

    Update on Mom's K/L

    Hi everyone,

    Quick little update. After only 1 Keytruda infusion and 3 weeks on 10mg of Lenvima, my mom's CA125 went from 416 to 229. She has had very few side effects – some fatigue but it is hard to attribute that to any specific thing, especially given she has chronic pleural effusions and has recently developed abdominal ascites- both are taking a toll on her. Her BP is still within normal range, no diarrhea or joint pain.
    She had her 2nd Keytruda last week and is scheduled for a PET/CT in about 1 month, so we will know more about how effective this combo is, but right now things are looking up.

    Hope you are all well. I'll keep updating so we can learn about all of this together.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited May 2020 #24
    jjtrim said:

    Update on Mom's K/L

    Hi everyone,

    Quick little update. After only 1 Keytruda infusion and 3 weeks on 10mg of Lenvima, my mom's CA125 went from 416 to 229. She has had very few side effects – some fatigue but it is hard to attribute that to any specific thing, especially given she has chronic pleural effusions and has recently developed abdominal ascites- both are taking a toll on her. Her BP is still within normal range, no diarrhea or joint pain.
    She had her 2nd Keytruda last week and is scheduled for a PET/CT in about 1 month, so we will know more about how effective this combo is, but right now things are looking up.

    Hope you are all well. I'll keep updating so we can learn about all of this together.

    Thanks for posting an update

    Thanks for posting an update on your Mom, JJ.  That sounds promising. Glad to hear she isn't having bad side effects.

    Love and Hugs,

    Cindi

  • ConnieSW
    ConnieSW Member Posts: 1,604 Member
    edited May 2020 #25

    Thanks for posting an update

    Thanks for posting an update on your Mom, JJ.  That sounds promising. Glad to hear she isn't having bad side effects.

    Love and Hugs,

    Cindi

    Glad to learn

    Things are going in the right direction, JJ. Is your mom feeling encouraged?

  • BluebirdOne
    BluebirdOne Member Posts: 552 Member
    edited May 2020 #26
    jjtrim said:

    Update on Mom's K/L

    Hi everyone,

    Quick little update. After only 1 Keytruda infusion and 3 weeks on 10mg of Lenvima, my mom's CA125 went from 416 to 229. She has had very few side effects – some fatigue but it is hard to attribute that to any specific thing, especially given she has chronic pleural effusions and has recently developed abdominal ascites- both are taking a toll on her. Her BP is still within normal range, no diarrhea or joint pain.
    She had her 2nd Keytruda last week and is scheduled for a PET/CT in about 1 month, so we will know more about how effective this combo is, but right now things are looking up.

    Hope you are all well. I'll keep updating so we can learn about all of this together.

    Glad to hear this

    encouraging report. For many of us this might be in our future. Give your mom and yourself a giant virtual hug from me. Always glad for an update. 

     

    xxoo

    Denise

  • dgrdalton
    dgrdalton Member Posts: 161
    edited May 2020 #27
    jjtrim said:

    Update on Mom's K/L

    Hi everyone,

    Quick little update. After only 1 Keytruda infusion and 3 weeks on 10mg of Lenvima, my mom's CA125 went from 416 to 229. She has had very few side effects – some fatigue but it is hard to attribute that to any specific thing, especially given she has chronic pleural effusions and has recently developed abdominal ascites- both are taking a toll on her. Her BP is still within normal range, no diarrhea or joint pain.
    She had her 2nd Keytruda last week and is scheduled for a PET/CT in about 1 month, so we will know more about how effective this combo is, but right now things are looking up.

    Hope you are all well. I'll keep updating so we can learn about all of this together.

    Thanks for the update!

    That is great news! So glad she is tolerating the meds so well!

    Donna D

  • dgrdalton
    dgrdalton Member Posts: 161
    edited June 2020 #28
    Slow with the update

    The week before my 4th Keytruda, I started having a lot of back, R hip and pelvic pain. Then my abdomen started hurting. Took pain pills for about 4 days. My oncologist and I decided the abdomen pain was from gas. The back, hip and pelvic is where my shingles was and my L5 S1 vertebrae were fused in 2006, so the back pain seems to be if I sit or stand too long. As of today I've had 69 doses of Lenvima (61 of those at 14mg.) I've had diarrhea in mornings, except for constipation a couple of times. My diet has been foods that don't cause diarrhea, heartburn or gas. So many of my favorite foods aren't worth the pain of eating anymore. I seem to have lost a few ounces each day the last 3 weeks which I needed (I'm about 12 lbs. overweight still.) The fatigue is slowly getting worse. I use a cane if I will be walking more than 100 feet or having to stand for long. My PET scan is scheduled for June 29th. Hope to find out if this is working. My CA-125 did go down 8.7 points this last time. But it went down during my chemo as well and then right back up. I'm hoping for good news! This is going much better than I expected! But I was a very active lady, even between frontline treatment and recurrance, so the fatigue is the hardest side effect for me.

    Would love to hear from jjtrim as to how her mom is doing.

    Stay safe, everyone! Donna D

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    So good to hear from you

    So good to hear from you Donna D. We will all hope for good news right there with you! I hope your pain has become a bit more manageable.  Is there a limit on the amount of Lenvima you can have? Or, do you keep on it for as long as it continues to work?  I hope you can beat some of that fatigue back. That was always the hardest for me during chemo too.

    Love and Hugs

    Cindi

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,999 Member
    Donna, good to hear from you,

    Donna, good to hear from you, especially since you are dealing with pain and fatigue.  While outside what you consider 'normal' for you, give in to the fatigue and consider rest "restorative".  Thank you for chronicling your experience.  

  • Forherself
    Forherself Member Posts: 686 Member
    Nice to hear

    You are doing ok.   I have had back and hip pain too.  I had surgery in October.  Now I am doing physical therapy, and I guess I never used my hip muscles because they feel broken.   I am going for my checkup July 16 and I think my oncologist will probably want to have imaging done, but they way the pain moves back and forth and goes away, I think it is really muscle pain and it is awful.  I hope you can get relief from your back and hip pain.  Stretching helps me.  

     

     

  • dgrdalton
    dgrdalton Member Posts: 161

    So good to hear from you

    So good to hear from you Donna D. We will all hope for good news right there with you! I hope your pain has become a bit more manageable.  Is there a limit on the amount of Lenvima you can have? Or, do you keep on it for as long as it continues to work?  I hope you can beat some of that fatigue back. That was always the hardest for me during chemo too.

    Love and Hugs

    Cindi

    Lenvima timeframe

    I think the Lenvima is 2 years or until it become intolerable. This combo really affects my memory, especially short term, more than the chemo did. And yes my pain is more manageable. Losing 5 lbs. the last 2 weeks has helped my back. Love & hugs to you, also!

  • dgrdalton
    dgrdalton Member Posts: 161
    PET scan Good news

    My 4th PET scan in the past year has finally been good news! My oncologist got the report in just before I left on Monday. I was hoping for the report to post on MyChart, but it hasn't yet. So all I know is that the lymph nodes have either shrunk or have remained stable. So the K/L combo is working. Yay! Still having side effects, but thankfully not all of them at once. The fatigue is constant, but I try to stay as busy as possible and rest often.

    Stay safe everyone!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    YES!!!!! So happy to see the

    YES!!!!! So happy to see the great news post!

    Love and Hugs,

    Cindi

  • LisaPizza
    LisaPizza Member Posts: 348 Member
    dgrdalton said:

    PET scan Good news

    My 4th PET scan in the past year has finally been good news! My oncologist got the report in just before I left on Monday. I was hoping for the report to post on MyChart, but it hasn't yet. So all I know is that the lymph nodes have either shrunk or have remained stable. So the K/L combo is working. Yay! Still having side effects, but thankfully not all of them at once. The fatigue is constant, but I try to stay as busy as possible and rest often.

    Stay safe everyone!

    Wonderful news!

    Wonderful news!

  • cmb
    cmb Member Posts: 886 Member
    Good news indeed!

    Donna D,

    Such good news from the PET scan! Thanks for keeping us updated.

  • Forherself
    Forherself Member Posts: 686 Member
    edited July 2020 #37
    dgrdalton said:

    PET scan Good news

    My 4th PET scan in the past year has finally been good news! My oncologist got the report in just before I left on Monday. I was hoping for the report to post on MyChart, but it hasn't yet. So all I know is that the lymph nodes have either shrunk or have remained stable. So the K/L combo is working. Yay! Still having side effects, but thankfully not all of them at once. The fatigue is constant, but I try to stay as busy as possible and rest often.

    Stay safe everyone!

    Happy to hear.

    Great to hear.  I have been praying for you.   

  • ConnieSW
    ConnieSW Member Posts: 1,604 Member
    WOW

    Your news made my day. 

  • Fridays Child
    Fridays Child Member Posts: 248 Member
    dgrdalton said:

    PET scan Good news

    My 4th PET scan in the past year has finally been good news! My oncologist got the report in just before I left on Monday. I was hoping for the report to post on MyChart, but it hasn't yet. So all I know is that the lymph nodes have either shrunk or have remained stable. So the K/L combo is working. Yay! Still having side effects, but thankfully not all of them at once. The fatigue is constant, but I try to stay as busy as possible and rest often.

    Stay safe everyone!

    Yay!

    Such great news, and so happy for you!

  • MAbound
    MAbound Member Posts: 1,164 Member
    edited July 2020 #40
    It's the good news that keeps us all going.

    I wish you weren't so fatigued, but it's good to hear that this seems to be helping. May the good news keep coming!

  • MoeKay
    MoeKay Member Posts: 396 Member
    edited July 2020 #41
    Congratulations on your good PET scan results

    I'm very happy to hear that the results of you most recent PET scan are good!  My childhood friend will be starting on Keytruda and Lenvima soon, so I am going to forward this thread to her.  I hope this combination therapy continues to bring you great results and that your fatigue diminishes soon.