My Lenvima/Keytruda experience so far - please share yours

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.

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 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.

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.

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.  

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

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.  

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.

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.   

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!

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

xxoo

Denise