Hey Cabo You WIN

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mrou50
mrou50 Member Posts: 389 Member
in Kidney Cancer #1

I stopped taking the CABO on Tuesday the side effects have made my daily life so miserable that I don't want to get out of bed.  The pain in my esophagus has been the worst and it just keeps getting worse by the day.  I spoke to my doctor and I told him I can't do this anymore even though it is working I am no longer happy, he agreed that it is time to stop.  I also asked him to give me a five week vacation from any drugs while I decide what I am going to do, and give my body a chance to detox from the CABO.  I may go back to CABO if we lower the dose to 20 mg's and I don't have the same issues otherwise I am done.  Sorry everone about quitting but I really want to be happy and limit pain.  Good luck to those of you who are still continuing CABO I hope it continues to work for you.

 

Mark

Comments

  • Abunai
    Abunai Member Posts: 173 Member
    #2
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    Sorry to hear

    I was just taken off of Votrient because it wasn't working for me.

    I'm sorry to hear that you were unable to tolerate the Cabo that was working for you, but I thank you for your post.

    I've been given a choice of my next course of action. One includes Cabo and one includes Opdivo. I've pretty much made up my mind for Opdivo, and I think your post solidifies the choice for me.

    Don't appologize for taking a break.

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    edited February 2017 #3
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    Mark,

    I'm taking 40 every other day. By about 3 weeks I need to skip another 2 or 3 doses. It makes a big difference. I'm taking a break now because of the buildup of side effects.

  • stub1969
    stub1969 Member Posts: 966 Member
    #4
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    Just curious

    I'm curious as to how much flexibility a patient has with these cancer meds.  Fox, you seem to have adjusted your medical regiment in a way that works for you.  Mark, will your doctor give you that option?  If he/she does, can you experiment with a dosage regiment/break cycle that will give you a good quality of life and still battle the cancer?  I'm praying for you, Mark!

    Stub

  • rhominator
    rhominator Member Posts: 233 Member
    #5
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    stub1969 said:

    Just curious

    I'm curious as to how much flexibility a patient has with these cancer meds.  Fox, you seem to have adjusted your medical regiment in a way that works for you.  Mark, will your doctor give you that option?  If he/she does, can you experiment with a dosage regiment/break cycle that will give you a good quality of life and still battle the cancer?  I'm praying for you, Mark!

    Stub

    The final word

    Over the last three years I've had two oncologists and both have graciously given ME the final say on dosages and breaks.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #6
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    foxhd said:

    Mark,

    I'm taking 40 every other day. By about 3 weeks I need to skip another 2 or 3 doses. It makes a big difference. I'm taking a break now because of the buildup of side effects.

    Hey Foxy, I see you changed

    Hey Foxy, I see you changed your picture! Good one!

    Always appreciate your input on here.

    Hugs, Jan

  • Qt34167
    Qt34167 Member Posts: 41
    #7
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    I am still on Sutent.  Since it is working my oncologist at Moffit does not want me to change to Opdivo or Cabo.  I researched a lot about Cabo and company Excelsis and it seems to be working well.

    My Oncologist id say that some people have been having bad side effects and dosage adjustment maay be necesary.

    One reason I woul opt for Cabo is not to have a port put in eventhough that would make scans and blood work easier

  • APny
    APny Member Posts: 1,995 Member
    #8
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    Mark, you're not quitting.

    Mark, you're not quitting. You're taking a break to improve the quality of your life. I hope you get some relief during this break. You can always decide to go back on Cabo or perhaps something else. Thinking of you! 

  • mrou50
    mrou50 Member Posts: 389 Member
    edited February 2017 #9
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    stub1969 said:

    Just curious

    I'm curious as to how much flexibility a patient has with these cancer meds.  Fox, you seem to have adjusted your medical regiment in a way that works for you.  Mark, will your doctor give you that option?  If he/she does, can you experiment with a dosage regiment/break cycle that will give you a good quality of life and still battle the cancer?  I'm praying for you, Mark!

    Stub

    Flexibility

    Stub my medical team gives a great say in what goes on with the meds and such.  I met with my ONC today and he said that if I want to be done with CABO that is fine with him, and that he things 20 mg's would probably do the same so he is reluctant to even go down to a reduced dosage.  We are going to take a break from chemo and decide what the next course of action will be after I detox.  As for doctors letting their patients do things like this they should it is your life and you should not be subject to unhappiness, and that is what my ONC said today, he said does not want to see my unhappy.  If you don't find your doctor in your corner like that I would get a new doctor.

    Mark

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited February 2017 #10
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    Hey, Mark, glad you are going

    Hey, Mark, glad you are going to get a break, well deserved! Glad too you can advocate for yourself and that your doctor listens, so important.

    Just know, I care...still

    Sending you love, from my heart to yours,

    Jan

  • todd121
    todd121 Member Posts: 1,448 Member
    edited February 2017 #11
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    Break from Cabo

    It just sucks that the side effects are that bad. I hope you feel better from a break and they can find a dosage/regimen that works without making you feel so crappy.

    Wishing you the best Mark.

    Todd

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #12
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    Mark, you are the LAST person

    Mark, you are the LAST person I would consider a quitter. You have been persistent and strong. I am hoping your 5 week vacation from the Cabo gets you to your next step in this fight. We are here cheering you on!

    Hugs

    Jojo

  • foxhd
    foxhd Member Posts: 3,181 Member
    edited February 2017 #13
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    Qt34167 said:

    I am still on Sutent.  Since it is working my oncologist at Moffit does not want me to change to Opdivo or Cabo.  I researched a lot about Cabo and company Excelsis and it seems to be working well.

    My Oncologist id say that some people have been having bad side effects and dosage adjustment maay be necesary.

    One reason I woul opt for Cabo is not to have a port put in eventhough that would make scans and blood work easier

    QT,

    never change a med until it does not work or the side effects become intolerable. If a med works, you can try to decrease dosage to deal with side effects.

    Opdivo and cabo are not chosen based on what is easier. That would be wrong. Opdivo is a immunologic. That means the drug works with your immune system to eliminate the tumor cells. It could cure you. Cabo is a drug hat blocks the developement of blood capillaries to stunt tumor growth. It kills nothing. Except the patient if toxicity occurs. Opdivo does not need a port. An iv is placed when you have blood work. It is removed after infusion.

  • foxhd
    foxhd Member Posts: 3,181 Member
    #14
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    I'm betting

    that you will feel good in a week. In 2 weeks you will feel as good as you ever will. You'll know what is right then.

  • foxhd
    foxhd Member Posts: 3,181 Member
    #15
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    Jan4you said:

    Hey Foxy, I see you changed

    Hey Foxy, I see you changed your picture! Good one!

    Always appreciate your input on here.

    Hugs, Jan

    Jan,

    it took me 5 years to figure that out. I'll bet I tried to change it 50 times. Tex never believed me when I told him I don't know how to use a computer. I've only recently stopped changing my texts because I finally found the "Q". Maybe I need a new selfie but I have no idea how to get it out of my poloroid. I have no other pictures.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #16
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    Jan4you said:

    Hey Foxy, I see you changed

    Hey Foxy, I see you changed your picture! Good one!

    Always appreciate your input on here.

    Hugs, Jan

    True Jan

    Still wearing the same jacket and T-shirt tho' (and he hasnt aged a day!)

  • hardo718
    hardo718 Member Posts: 853 Member
    #17
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    Big difference

    Mark between taking a break & quitting.  Nevertheless, even if you decide down the road that you're done with it all, in my eyes you're still a warrior.  Funny, having dealt with cancer patients in a professional setting, including family members, I have never once viewed any as quitters, not in my vocabulary I guess.  It's just a personal choice that each person is entitled to make.  Certainly the side effects can be so limiting it makes it difficult to feel the joy of life. You deserve the best.  I have you in prayers.

    Donna~

    Donna~

  • Qt34167
    Qt34167 Member Posts: 41
    #18
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    foxhd said:

    QT,

    never change a med until it does not work or the side effects become intolerable. If a med works, you can try to decrease dosage to deal with side effects.

    Opdivo and cabo are not chosen based on what is easier. That would be wrong. Opdivo is a immunologic. That means the drug works with your immune system to eliminate the tumor cells. It could cure you. Cabo is a drug hat blocks the developement of blood capillaries to stunt tumor growth. It kills nothing. Except the patient if toxicity occurs. Opdivo does not need a port. An iv is placed when you have blood work. It is removed after infusion.

    HD

    Thanks for the great advice!

  • Allochka
    Allochka Member Posts: 1,062 Member
    edited February 2017 #19
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    Agree with Apny and Donna -

    Agree with Apny and Donna - this is not quitting. And pleasecdo not apologise to us -  you owe us nothing. The only person you should care about is you ( and you family), not us!

    the break will help you to make the right decision. It is hard to do a good choice when you feel awful and overwhelmed.

  • Deanie0916
    Deanie0916 Member Posts: 616 Member
    #20
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    My prayers are with you

    I pray for peace and wisdom as you have this break. Thanks for your strength and courage!

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