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Keytruda/Lenvima ---- DAY 21

Little Annie
Posts: 28
Joined: Jul 2018

Glad to see the Discussion Board is up and running.  I missed all you ladies.   Well, today is Keytruda infusion #2 for the 30 minute infusion.   Blood work was yesterday and I was expecting WBC, RBC, and hemaglobin to all be down but surprisingly all were actually up and all in normal range. great!

Started Day 1 with 2 pills daily of 10mg Lenvima but after Day 10 my oncologist lowered to only 1 pill per day but side effects stayed about the same.  The major complaint is tiredness (house chores not getting done) but mouth sores is a close second (mainly tongue is sore all over to the touch) and eating is difficult because of this.  Trying to do some walking every day but can't go nearly as far and fast as I would like.   Nausia is setting in tonight just like the first infusion but Zofran seems to help.   My GERD is also much worse tonight and I believe this is related to Keytruda because it acted up after the first infusion.   My mood goes up and down but in general, this regiment is not as bad as I was expecting but lying on the couch much of the day is not fun.

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

I was frantic when the site went down as I so wanted to hear from you. It sounds like you are hanging in there with the L/K treatment. When I was not started because of BP, I was to see in a week what happened with new BP drug. Then the doc had to cancel due to flu and then they messed up the appt. time and now will meet with doctor on 17th. I am not sure what I want to do. You are our pioneer with this treatment and I know everyone is following your posts and hoping this will be a good thing for you. Thank you for being so honest and for posting. My heart is with you. xoxo df

BluebirdOne's picture
BluebirdOne
Posts: 395
Joined: Jul 2018

Am I remembering correctly that someone on our board had a pharmacist suggest inserting the pill into a marshmallow to keep the mouth sores at bay? 

 

Edit: I searched on the site using ”marshmallow “ as a key word and the thread from Jan. 2019 came out with the marshmallow trick as well as other tips. 

dgrdalton's picture
dgrdalton
Posts: 152
Joined: Jun 2017

Good to hear that you are doing well. I have worried about the L/K treatment's effects on the stomach as I have GERD plus diagnosed last June with Barrett's Esophagus. I had read that the Lenvima could cause stomach issues. Thank you for the update and let us know if you try the marshmallow trick!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

Little Annie, it has been awhile.  How are you doing?  Prayers for you our dear warrior!

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