Cabozantinib

markuk
markuk Member Posts: 4
in Kidney Cancer #1

Hi,

I’m a 47 male from the Uk, and I was diagnosed in december2016 with Renal Cell Cancer, with secondary’s spread to my right arm and a spot on my Vertebrae. My left kidney was removed followed by two week’s radiotherapy.

I then started on Sutent 37.5mg 4-2 cycle.  After 2 cycles, I was scanned and the cancer has now spread to my liver and lungs. My whole world came crashing down. I read so many positive things about Sutent, and had some hope.

The oncologist is now planning to put me on cabozantinib. This is a new drug in the UK, and I’m looking to find out how people are doing. What side effects they have, and how you control them.

I’m keen to hear how you are getting on.

Look forward to hearing from you.

Best Regards

Mark

Comments

  • rhominator
    rhominator Member Posts: 233 Member
    #2
    Hi Mark!

    Welcome to the group!  Smile  But sorry you had to join.

    Your case sounds similar--but not identical--to mine.  My initial diagnosis in 2013 was a tumor in my right kidney and a big, ugly metastis in my left humerus. Now I have some mets on/in my spine.  I was on Votient for ~3 years; now I'm on Opdivo. Cabo is next in line if Opdivo doesn't take care of the spine mets (and others), so I too am keenly interested in Cabo.

    I'm certain there will be some amount of trepidation as you embark on a new drug treatment.  I know I did when I started Votrient.  But I slowly got used to it.  I worked a lot with my doctors to adjust my Votient dosage to ensure an acceptable quality-of-life.  Matter of fact, my doctors were very proactive about it.  You can click on my profile/picture to get more thorough story.  During the last three years of treatment I've been active, landed a job with NASA, and have been generally enjoying life. I hope you can have the same success.

    You should follow foxhd's and Sslee723's posts. Foxhd has been on Cabo for awhile and Sslee723 just started.

    A frequent piece of advice is to work with you doctors to adjust your dosage(s) so that the drug works both in you and for you.

    Best regards

     

  • markuk
    markuk Member Posts: 4
    #3
    rhominator said:

    Hi Mark!

    Welcome to the group!  Smile  But sorry you had to join.

    Your case sounds similar--but not identical--to mine.  My initial diagnosis in 2013 was a tumor in my right kidney and a big, ugly metastis in my left humerus. Now I have some mets on/in my spine.  I was on Votient for ~3 years; now I'm on Opdivo. Cabo is next in line if Opdivo doesn't take care of the spine mets (and others), so I too am keenly interested in Cabo.

    I'm certain there will be some amount of trepidation as you embark on a new drug treatment.  I know I did when I started Votrient.  But I slowly got used to it.  I worked a lot with my doctors to adjust my Votient dosage to ensure an acceptable quality-of-life.  Matter of fact, my doctors were very proactive about it.  You can click on my profile/picture to get more thorough story.  During the last three years of treatment I've been active, landed a job with NASA, and have been generally enjoying life. I hope you can have the same success.

    You should follow foxhd's and Sslee723's posts. Foxhd has been on Cabo for awhile and Sslee723 just started.

    A frequent piece of advice is to work with you doctors to adjust your dosage(s) so that the drug works both in you and for you.

    Best regards

     

    Thank you for the advice

    Hi Rhominator,

    Thank you for the reply.

    Great to hear that you are doing so well. Hopefully i can also acheive a good quality of life. Fingers crossed!

    Wishing you all the very best and good health

    Mark

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #4
    Hi and welcome Mark! So sorry

    Hi and welcome Mark! So sorry for all you are going through. None of us like this kind of uncertainty!

    May I also suggest you seek out those on SmartPatients.com

    Yes, there are some newer treatments and hopefully you will have a positive response.

    I will pray for you to find the strength, courage and wisdom to get through this time. Know that WE (I) will be here with you all the way. You are not alone in this battle!

    Best to you and yours,

    Sending you hope and better health,

    Jan

  • Sslee723
    Sslee723 Member Posts: 54
    #5
    Cabo

    I don't have any experience with Cabo yet, I will be getting it on Tuesday so I'll start it on Wednesday.  A little nervous about starting something new.  But I'll post my side effects.  Good luck to you with it .

  • markuk
    markuk Member Posts: 4
    #6
    Jan4you said:

    Hi and welcome Mark! So sorry

    Hi and welcome Mark! So sorry for all you are going through. None of us like this kind of uncertainty!

    May I also suggest you seek out those on SmartPatients.com

    Yes, there are some newer treatments and hopefully you will have a positive response.

    I will pray for you to find the strength, courage and wisdom to get through this time. Know that WE (I) will be here with you all the way. You are not alone in this battle!

    Best to you and yours,

    Sending you hope and better health,

    Jan

    Thank you

    Hi Jan,

    Thank you for your kind words. I'm really hoping for some positive news, and good results from cabo.

    I'll keep you informed. Best wishes and health to you too

    Regards

    Mark

     

  • markuk
    markuk Member Posts: 4
    #7
    Sslee723 said:

    Cabo

    I don't have any experience with Cabo yet, I will be getting it on Tuesday so I'll start it on Wednesday.  A little nervous about starting something new.  But I'll post my side effects.  Good luck to you with it .

    Cabo

    Wishing you the best on starting cabo.

    A few tips that i have received could may help you.

     

    diarrhea was the main reason I was bumped down to 40 mg because it wasn't controlled even with a prescription anti-diarrheal after 4 months. Had it not been for that, I probably would still be on it.

    That being said, try to stay ahead of the side effects. Wear socks so you can avoid blisters. Be prepared for mouth blisters. Stock up on some over the counter anti-diarrheal.

    Some people have really bad side effects on Cabo. Honestly, compared to other treatments and what I expected, it hasn't been that bad for me. everyone is different.

    sending best wishes and good health

    Regards

    Mark

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    #8
    Cabo has

    not been too bad for me. Once I decreased dose and freq. I could manage to do lots of things.

  • tamaven01
    tamaven01 Member Posts: 21
    #9
    markuk said:

    Cabo

    Wishing you the best on starting cabo.

    A few tips that i have received could may help you.

     

    diarrhea was the main reason I was bumped down to 40 mg because it wasn't controlled even with a prescription anti-diarrheal after 4 months. Had it not been for that, I probably would still be on it.

    That being said, try to stay ahead of the side effects. Wear socks so you can avoid blisters. Be prepared for mouth blisters. Stock up on some over the counter anti-diarrheal.

    Some people have really bad side effects on Cabo. Honestly, compared to other treatments and what I expected, it hasn't been that bad for me. everyone is different.

    sending best wishes and good health

    Regards

    Mark

     

    Cabo -

    Hi there, I actually have had very minimal side effects with cabo.  I haven't had any mouth blisters.  I have had a bit of tender feet, but I've figured that out by using lots of lotion on them, icing them and elevating them and it's gone away completely.  I also didn't end up with diarhea, so be open to having it be really easy! It's possible, we're all so different.   I am going to write up some of my cabo tips on the main board or you can contact me on my website at timetravelcoach.com where I write about my cancer experience and give tips. 

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