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My Lenvima/Keytruda experience so far - please share yours

dgrdalton's picture
dgrdalton
Posts: 150
Joined: Jun 2017

My recurrence diagnosis was Aug 19, 2019. Metastatic UPSC to multiple lymph nodes. Did 6 more cycles of Taxol/Carbo ending 12/30/19. PET scans Jan & Mar indicated some response, but also spread to more lymph nodes. Started Keytrud, 200 mg infusion on 4/6. On 4/7 started Lenvima 14 mg. By day #3 my blood pressure was way too high. I started BP meds and a 3 day Lenvima break. Started Lenvima 10 mg on 4/13. BP is doing well. On day #2 of L-10 mg I started having some diarrhea in AM and mouth sores. Salt/baking soda rinse and eating more bland foods has helped the mouth sores.

My Lenvima comes in 5 day dose packs with 10 mg and 4 mg capsules. I take it with food. Tomorrow I take 10 mg, then 2 days of 12 mg. If I'm doing okay then back to 14 mg.

I had read the side effects and was not really wanting to take this combo, but it was the only option for me. So far it has not been nearly as bad as what I imagined!

Please share if you are on this combo. God bless and stay alert and safe!

Donna D

dgrdalton's picture
dgrdalton
Posts: 150
Joined: Jun 2017

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

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

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!

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1733
Joined: Jun 2015

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!

dgrdalton's picture
dgrdalton
Posts: 150
Joined: Jun 2017

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's picture
Armywife
Posts: 452
Joined: Feb 2018

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

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Started this on Monday. Will keep you posted. 

Love23
Posts: 8
Joined: Feb 2019

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!

ConnieSW
Posts: 1545
Joined: Jun 2012

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

dgrdalton's picture
dgrdalton
Posts: 150
Joined: Jun 2017

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!

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

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!

Fridays Child
Posts: 203
Joined: Jul 2019

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.

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

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.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2862
Joined: Mar 2013

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's picture
cmb
Posts: 624
Joined: Jan 2018

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.

ConnieSW
Posts: 1545
Joined: Jun 2012

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
Posts: 49
Joined: Feb 2016

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's picture
Armywife
Posts: 452
Joined: Feb 2018

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

dgrdalton's picture
dgrdalton
Posts: 150
Joined: Jun 2017

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

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

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.  

BluebirdOne's picture
BluebirdOne
Posts: 370
Joined: Jul 2018

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's picture
Forherself
Posts: 491
Joined: Jan 2019

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
Posts: 1101
Joined: Jun 2016

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))

Fridays Child
Posts: 203
Joined: Jul 2019

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!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1733
Joined: Jun 2015

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's picture
cmb
Posts: 624
Joined: Jan 2018

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
Posts: 63
Joined: Apr 2020

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's picture
NoTimeForCancer
Posts: 2862
Joined: Mar 2013

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's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

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. 

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