Queen of Cheese (Susan), how did the Keytruda go?

135

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  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited October 2020 #42
    Still kicking

    I'm now on the K/L regime only 10mg of L. Who knows if it will work. Quite upset when my doc brought up hospice. Not quite there yet. Have that Italian wedding next summer....

  • Theskinnyscot
    Theskinnyscot Member Posts: 36 Member
    edited October 2020 #43
    So nice to see you on here.

    So nice to see you on here. Hoping this regime will work well for you. y. 

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    edited October 2020 #44
    CheeseQueen57 said:

    Still kicking

    I'm now on the K/L regime only 10mg of L. Who knows if it will work. Quite upset when my doc brought up hospice. Not quite there yet. Have that Italian wedding next summer....

    I hope it works for you, and

    I hope it works for you, and isn't too rough on you.  It's nice that we've had a few threads about this combo for real world information. Although none if us are in control, I have read many times that having a goal is one of the things that makes a big difference. And of course, as has been mentioned a few times, dedicated palliative care can do a great deal for quality of life, and can be involved even while still pursuing treatment.

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    edited October 2020 #45
    CheeseQueen57 said:

    Still kicking

    I'm now on the K/L regime only 10mg of L. Who knows if it will work. Quite upset when my doc brought up hospice. Not quite there yet. Have that Italian wedding next summer....

    (((Susan))) I am so sorry

    (((Susan))) I am so sorry with all the pain and suffering you have had to endure. I agree that our health care system sucks - from doctors to insurance companies to health care facility! I am hoping and praying this works for you, my friend, because after all, you are expected in Italy!

    Sending you all my love and prayers!

    Love,

    Eldri

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    edited October 2020 #46
    You sound better

    Than the last time you were here.  I hope so.  You know I am rooting for you.  You have been so strong.

  • MAbound
    MAbound Member Posts: 1,175 Member
    edited October 2020 #47
    CheeseQueen57 said:

    Still kicking

    I'm now on the K/L regime only 10mg of L. Who knows if it will work. Quite upset when my doc brought up hospice. Not quite there yet. Have that Italian wedding next summer....

    Fat Lady?

    Nope! Don't hear no fat lady singing for you yet! You have other plans! I like CMB's suggestion to Donna about palliative care vs. hospice. Whatever tools work to get you where you want to be! Hang in there, kiddo!

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited October 2020 #48
    Where there is a will

    there is a way and if anybody can keep on keeping on, it is you. Hoping the L/K works well at keeping the beast at bay and indeed gives you all the time you desire. df

  • pato58
    pato58 Member Posts: 120 Member
    edited October 2020 #49
    Hi Susan,

    You are in my thoughts my dear Cheese!

  • Yeo
    Yeo Member Posts: 25 Member
    edited October 2020 #50
    Sending Love

    Sending, hugs, prayers and love your way.

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    edited October 2020 #51
    Praying it works for you!  An

    Praying it works for you!  An Italian wedding next summer is such a lovely thought.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited October 2020 #52
    Thinking of you today Cheese.

    Thinking of you today Cheese. I hope you are having a pain-free day.

    Love and Hugs,

    Cindi

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,513 Member
    edited October 2020 #53
    CheeseQueen57 said:

    Still kicking

    I'm now on the K/L regime only 10mg of L. Who knows if it will work. Quite upset when my doc brought up hospice. Not quite there yet. Have that Italian wedding next summer....

    and you KEEP kickin' it Susan

    and you KEEP kickin' it Susan!  Hugs and cheering you on.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited November 2020 #54
    Diarrhea

    So now I'm being plagued with diarrhea. Usually Imodium hits it but not this time. I've got a prescription for lomotil but the potential side effects concern me. But I can't get off the couch without a bathroom run. Any advice?  The hits just keep on coming. But I have to laugh...when my son was little he would sing his own version of the diarrhea song"diarrhea, diarrhe, some people think it's funny but it isn't". He was a funny kid. Hope I get relief soon. 

  • bluehyacinth
    bluehyacinth Member Posts: 54 Member
    edited November 2020 #55
    Depending on how long you

    Depending on how long you have had diarrhea you may want to let your Keytruda onc know. If you are only on Keytruda now and have constant diarrhea it could be colitis or just a side effect that will go aeway. I had the "go away kind for a few weeks" during the first 3 months and have not had it since. I did have some digestive problems and was on digestive enzymes (Creon which also plugs you up some) for months, but that also went back to normal and may not have had anything to do with Keytruda, however Keytruda did cause my thyroid to capitulate. I take a great probiotic every day and discovered I need to take it  to  have regular dayly "perfect" bowel movements. It took some trial and error to find the right one(s), but I sure noticed right away wehen I found one that worked for me. We are all different and what works for one person may not work for another. Perhaps something to try. I hope it resolves quickly.

  • Armywife
    Armywife Member Posts: 451 Member
    edited November 2020 #56
    CheeseQueen57 said:

    Diarrhea

    So now I'm being plagued with diarrhea. Usually Imodium hits it but not this time. I've got a prescription for lomotil but the potential side effects concern me. But I can't get off the couch without a bathroom run. Any advice?  The hits just keep on coming. But I have to laugh...when my son was little he would sing his own version of the diarrhea song"diarrhea, diarrhe, some people think it's funny but it isn't". He was a funny kid. Hope I get relief soon. 

    Hugs!

    I have absolutely nothing to offer about the diarrhea, (except that my only talent in life is that I'm an excellent speller and I still can't spell diarrhea on the first try) but I just wanted to say how wonderful it is to see you posting!  Much love.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,513 Member
    edited November 2020 #57
    Susan, I got nothing for you

    Susan, I got nothing for you except my love and support.  Looks like bluehyacinth has some good tips on it - thank you!

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    edited November 2020 #58
    CheeseQueen57 said:

    Diarrhea

    So now I'm being plagued with diarrhea. Usually Imodium hits it but not this time. I've got a prescription for lomotil but the potential side effects concern me. But I can't get off the couch without a bathroom run. Any advice?  The hits just keep on coming. But I have to laugh...when my son was little he would sing his own version of the diarrhea song"diarrhea, diarrhe, some people think it's funny but it isn't". He was a funny kid. Hope I get relief soon. 

    I have no advice on this.

    I have no advice on this.  Just sending you hugs and hope it resolves quickly.

  • dgrdalton
    dgrdalton Member Posts: 161 Member
    edited November 2020 #59
    I went with the Lomotil and

    I went with the Lomotil and it worked for me. But since I've been off Keytruda/Lenvima I've not been able to "go" without help. And it's gotten worse. I'm thinking my intestinal biome must have really gotten messed up or it's the cancer. Sure hope you find an answer as I do understand how limiting it can be.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited November 2020 #60
    In hospital again

     So more fun. I'm in the hospital with Keytruda induced colitis. Being treated with IV high dose steroids. I continue to have intractable nausea and some diarrhea. But the good news is scan showed tumor reduction. So if I can live through the side effects, maybe this cocktail will work. I'm much improved now and hopefully will be home before thanksgiving since the engaged couple will be with us for a week. Still trying to remain positive but some days are very hard. I pray for you all every night. 

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    edited November 2020 #61
    2020 just keeps on "giving"

    2020 just keeps on "giving" for you, Susan. I'm sorry you're back in hospital but good news about tumor shrinking. 

    Great that family is visiting for Thanksgiving. 

    Praying for you.

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