Cabo?

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  • Teashea
    Teashea Member Posts: 89
    Eliezer2 said:

    i am now on cabo

    i am now on cabo

    Hi

    How are you doing on the cabo? Wishing you the best.

  • Teashea
    Teashea Member Posts: 89
    edited August 2016 #83
    dancn

    It sounds so painful. I am sorry that you are in pain.

  • foxhd
    foxhd Member Posts: 3,181
    cabo

    I've had some nausea and fatigue. Kinda been waiting for it to show up. so I'm not surprised. But yesterday the hand foot syndrome hit. My feet feel like they have been skinned. Almost to tender to stand on them. Yikes! I had plenty of left arm and shoulder pain, and neck pain. They are gone. I think it is all part of cleaning the nivo out of my system. Some weakness and sensory loss remain in my right shoulder, arm and hand. Maybe that will be gone soon. Minor issues with diarrhea are manageable. I could do this for a while. I like it better than votrient so far. I don't want to turn all white again. You can't be a "sunshine" boy when you're albino. I have blood work and office visit today. But I don't expect any new news.

  • dancnbear1
    dancnbear1 Member Posts: 86
    foxhd said:

    cabo

    I've had some nausea and fatigue. Kinda been waiting for it to show up. so I'm not surprised. But yesterday the hand foot syndrome hit. My feet feel like they have been skinned. Almost to tender to stand on them. Yikes! I had plenty of left arm and shoulder pain, and neck pain. They are gone. I think it is all part of cleaning the nivo out of my system. Some weakness and sensory loss remain in my right shoulder, arm and hand. Maybe that will be gone soon. Minor issues with diarrhea are manageable. I could do this for a while. I like it better than votrient so far. I don't want to turn all white again. You can't be a "sunshine" boy when you're albino. I have blood work and office visit today. But I don't expect any new news.

    Fox, I found that by keeping

    Fox, I found that by keeping my feet elevated as much as possible kept the pain levels down. I also rubbed them down with a foot lotion and an occasional bath in warm water with epson salts helped. But eventually it always got to the point that it hurt like heck to walk on them so staying off of them as much as possible is the best solution. good luck.

  • Jojo61
    Jojo61 Member Posts: 1,309
    You are all such courageous

    You are all such courageous and valiant fighters...all this pain and discomfort from the meds and hardly a complaint....just a report of your symptoms. Keep at it and I know you are going to soon be reporting that all these side effects were well worth it!

    Hang in there, you guys rock!!

    Hugs

    Jojo

  • PK_Chicago
    PK_Chicago Member Posts: 58
    edited August 2016 #87
    Great updates! Thank you!

    Fox - 

    Your detailed updates are awesome! I was on Nivo as well - soft tissue somewhat stable - bone mets active, so now the plan is a new therapy Lenvatinib in combination with Everolimus. I am waiting for the drugs to start. I had radiation as well - finding it made some areas outside the zone weak - mainly my back. Hoping the new drugs do the trick - I did well on torisel so I'm hopeful.

    I will update here as well - keep on trucking!!!!

    PK

  • angec
    angec Member Posts: 924
    Hey Foxy!  How are you? What

    Hey Foxy!  How are you? What did the docs say? Hugs!

  • foxhd
    foxhd Member Posts: 3,181
    elevated feet

    That's what a nurse says. A therapist says, "Go outside and do something. And stop whining. "But my feet hurt!" "Shut up and give me 10 pushups!" WAH!

    Someday I'll go back and read some of my old posts. I don't remember being such a cry baby.

    Nothing to report re: office visit. And cabo is so far so good. Much less se's compared to votrient. After a few more weeks, I'll forget I'm on a drug. Oh never mind. That's the maryjane talking.

  • rhominator
    rhominator Member Posts: 233
    Thanks for the updates

    Fox and Teashea:

    Thanks much for the updates on your 'cabo' treatments!  I just read up on the med this weekend.  Sure sounds encouraging for a 2nd line treatment.  Can't wait to talk to my onc about it.

  • Teashea
    Teashea Member Posts: 89
    Fox you are funny!

    Got a kick from your post. two and a half weeks on cabo and no side effects to speak of. Also I have more energy..... No more excuses for me, I am going to get out more. Rho I recommend cabo.

  • cheatinlil
    cheatinlil Member Posts: 197
    Fox,

    Fox,

    I'm sorry you are having such a hard time.  You are the one I look to for hope and encouragement.  You need a Fox type person to pour back into you right now.  You not feeling good is just unacceptable.  Now who do I need to call and talk to about this (or meet them in a back alley and set them straight).  Just say the word, I am there! Keep posting the good the bad and the ugly!!! I'm sending prayers and positive thoughts your way.  You are not alone.  We are all here for you.

     

     

  • foxhd
    foxhd Member Posts: 3,181

    Fox,

    Fox,

    I'm sorry you are having such a hard time.  You are the one I look to for hope and encouragement.  You need a Fox type person to pour back into you right now.  You not feeling good is just unacceptable.  Now who do I need to call and talk to about this (or meet them in a back alley and set them straight).  Just say the word, I am there! Keep posting the good the bad and the ugly!!! I'm sending prayers and positive thoughts your way.  You are not alone.  We are all here for you.

     

     

    cheatinlil

    I'm not having such a hard time. I'm lucky to have the best treatments available, and that I respond to them. I'm in good hands.

  • dancnbear1
    dancnbear1 Member Posts: 86
    Cabo and my Feet

    My feet have gotten so bad over the last few days that I can hardly walk. The blisters are extremely bad and the surface of the skin is just so friggin sensative. In the short time hot waterbath with epson salts coupled with a non alcohol rub down of feet with lotion has worked but not this time. Staying off of feet and keeping them elevated works but as soon as I get up BAM. Pain is back. Anyone have any thoughts other than keep feet elevated and just suck it up and deal with it. I can do that but would prefer an easier method of dealing with this.  ------dancnbear------

     

  • marosa
    marosa Member Posts: 333
    Fox, you are one of the most positive and inspiring persons

    ever!  You give and give and give!  If by wishes and good vibes it all depended, you would be be one of the healthiest persons alive!  And while it might not all depend on these good wills, I feel they can help.  Sending you healing and loving thoughts with all the force of my heart.  You are one cool guy I look up to!

  • 4thstagercc
    4thstagercc Member Posts: 3
    edited August 2016 #96
    Cabo

    Was just  on Cabo after my sutent stopped working, all new growths, brain, pelvic bone, lymph nodes in lungs, so gonna try the Opdiva in two weeks after a break of two weeks from Cabo, which seemed to be stabilizing brain and pelvic lungs had some growth but nothing Docs are worried about.  Supposedly just approved for kidney cancer, so we will see how it goes, I believe is only a 20% chance that it will work and they know of one patient doing fine on it for a year now.

     

  • foxhd
    foxhd Member Posts: 3,181

    Cabo and my Feet

    My feet have gotten so bad over the last few days that I can hardly walk. The blisters are extremely bad and the surface of the skin is just so friggin sensative. In the short time hot waterbath with epson salts coupled with a non alcohol rub down of feet with lotion has worked but not this time. Staying off of feet and keeping them elevated works but as soon as I get up BAM. Pain is back. Anyone have any thoughts other than keep feet elevated and just suck it up and deal with it. I can do that but would prefer an easier method of dealing with this.  ------dancnbear------

     

    me too

    over this past week my feet have caught fire. Like being skinned alive.

  • foxhd
    foxhd Member Posts: 3,181
    marosa said:

    Fox, you are one of the most positive and inspiring persons

    ever!  You give and give and give!  If by wishes and good vibes it all depended, you would be be one of the healthiest persons alive!  And while it might not all depend on these good wills, I feel they can help.  Sending you healing and loving thoughts with all the force of my heart.  You are one cool guy I look up to!

    Maria

    It's all about staying alive long enough to get to meet you in person. You give me something to look forward to. But one step at a time. I want to be at my best when that day comes. PS, I don't have a best side. They're all good. Love you Maria.

  • Footstomper
    Footstomper Member Posts: 1,237

    Cabo

    Was just  on Cabo after my sutent stopped working, all new growths, brain, pelvic bone, lymph nodes in lungs, so gonna try the Opdiva in two weeks after a break of two weeks from Cabo, which seemed to be stabilizing brain and pelvic lungs had some growth but nothing Docs are worried about.  Supposedly just approved for kidney cancer, so we will see how it goes, I believe is only a 20% chance that it will work and they know of one patient doing fine on it for a year now.

     

    I confess

    I (and a few others here) am somewhat in love with Opdivo (or Nivomulab). Good results and no side effects for some, not all. It seems quite common that it stops working so well after a while. I am still taking it despite the appearance of a large met in my lungs. Everything else has shrunk or disappeared. So now its  Opdivo + aggressive radiation. We'll see what happens next.

  • moon_29
    moon_29 Member Posts: 6
    edited August 2016 #100

    Cabo and my Feet

    My feet have gotten so bad over the last few days that I can hardly walk. The blisters are extremely bad and the surface of the skin is just so friggin sensative. In the short time hot waterbath with epson salts coupled with a non alcohol rub down of feet with lotion has worked but not this time. Staying off of feet and keeping them elevated works but as soon as I get up BAM. Pain is back. Anyone have any thoughts other than keep feet elevated and just suck it up and deal with it. I can do that but would prefer an easier method of dealing with this.  ------dancnbear------

     

    Hi dancnbear1 and Fox,

    Hi dancnbear1 and Fox,

    I have been on Votrient since December 2015. One of the side effects I experienced was HFS, actually foot syndrome only in my case. I have used J.R. Watkins' pain relieving ointment available on Amazon.com

    https://www.amazon.com/dp/B00027BQQ8?ref_=ams_ad_dp_asin_2 and

    https://www.amazon.com/J-R-Watkins-Natural-Repair-Peppermint/dp/B0052P1Y3A/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1472007542&sr=1-1&keywords=watkins+foot+salve and

    https://www.amazon.com/Watkins-Foot-Lotion-Rejuvenating-Peppermint/dp/B0010EO0YW/ref=sr_1_sc_1_s_it?s=hpc&ie=UTF8&qid=1472007644&sr=1-1-spell&keywords=watkins+peppermint+lotion

    These have helped me A LOT! Especially the pain relieving ointment in the green tin box. They all contain menthol, camphor or peppermint and will help cool that burning heat in your feet tremendously.  They worked for me. After 4 mos on Votrient  this side effect has disappeared. 

    Good luck to you!

    Kitty

  • moon_29
    moon_29 Member Posts: 6

    Cabo and my Feet

    My feet have gotten so bad over the last few days that I can hardly walk. The blisters are extremely bad and the surface of the skin is just so friggin sensative. In the short time hot waterbath with epson salts coupled with a non alcohol rub down of feet with lotion has worked but not this time. Staying off of feet and keeping them elevated works but as soon as I get up BAM. Pain is back. Anyone have any thoughts other than keep feet elevated and just suck it up and deal with it. I can do that but would prefer an easier method of dealing with this.  ------dancnbear------

     

    Also, no hot or long feet

    Also, no hot or long feet soaking of any kind. A big no-no. No more than a few minutes and use cold water. Otherwise the blisters will become bigger and skin will peel off even more. I was told this by a palliative care nurse.

    Hope this helps. It is tough now but it will get better.