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Cabo?

124

Comments

  • 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. 

  • JerzyGrrl
    JerzyGrrl Member Posts: 760
    foxhd said:

    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.

    Cabo -- and Fox! -- reminders

    Hi, Fox -- I was in a new grocery store and came across a display of "Cabo Chips" (including Mango Chili Lime, no less).  My first time to see that brand, but I thought of you.  Glad to hear the Cabo is so far so good.  You're in my thoughts and prayers. 

  • Teashea
    Teashea Member Posts: 89
    Oh Fox

    So sorry to hear that your feet are hurting. Damn! So far I don't have any side effects to speak of. More constipation than diarrhea. Heard they sell gel socks on Amazon that help with the pain. Praying for everyone. 

  • Teashea
    Teashea Member Posts: 89
    Hi Fox

    How are you doing on the cabo? How are your feet? I am still doing great. Not really any side effects that I can not handle so far. Wishing you the best.

  • foxhd
    foxhd Member Posts: 3,181
    cabo

    Boy, what timing. I've been fine. Mostly. But big time foot sores. Hit hard this weekend. So I attacked. Steroids for a few days. antibiotic creams, pain relievers. If I can golf tomorrow, I'm ok. if not, I'll talk to doc. May need to adjust dosage. It is still a ton better than votrient.

  • Footstomper
    Footstomper Member Posts: 1,237
    edited August 2016 #106

    Can't wait to switch

    Fox, Teashea and footstomper, sometimes I secretly hope my next scan shows some progression so I can justifiably switch from Votrient to one of these new drugs. Is that perverse?

    Yes

    That is exceedingly perverse. I know what you mean though. The next one might be a miracle. Pandora has a lot to answer for.

  • rhominator
    rhominator Member Posts: 233
    Can't wait to switch

    Fox, Teashea and footstomper, sometimes I secretly hope my next scan shows some progression so I can justifiably switch from Votrient to one of these new drugs. Is that perverse?

  • foxhd
    foxhd Member Posts: 3,181
    edited August 2016 #108

    Can't wait to switch

    Fox, Teashea and footstomper, sometimes I secretly hope my next scan shows some progression so I can justifiably switch from Votrient to one of these new drugs. Is that perverse?

    I was so excited to fail votrient.

    Quality of life issues were a real problem.

  • MattInVa
    MattInVa Member Posts: 50
    edited September 2016 #109
    I start cabo next wed.

    I start cabo next wed. My onc recommends going full throttle on dose and cutting back if the toxicology becomes bad.

     

    An interseting thing is that this was not on his list of medications...I knew about it coming down the line from my time at Hopkins last year, It shows MUCH better results and its recommended over Afinitor (Everolimus).

     

    IF I had my way I would mix these drugs, opdivo worked to a degree but they dont really want to do that unless on trials

  • Footstomper
    Footstomper Member Posts: 1,237
    MattInVa said:

    I start cabo next wed.

    I start cabo next wed. My onc recommends going full throttle on dose and cutting back if the toxicology becomes bad.

     

    An interseting thing is that this was not on his list of medications...I knew about it coming down the line from my time at Hopkins last year, It shows MUCH better results and its recommended over Afinitor (Everolimus).

     

    IF I had my way I would mix these drugs, opdivo worked to a degree but they dont really want to do that unless on trials

    Afinitor

    Did nothing for me. I might just as well have been taking saline.

  • BellaBinksMom
    BellaBinksMom Member Posts: 78
    foxhd said:

    Well here's the thing.

    After my 3 months on nivo I've had nothing but new growth in my lungs and my spine. Only a couple belly nodes remained the same. Absolutely stunned. I completely expected excellent results from the nivo. Instead it worked like starter fertilizer. My upper extremity strength and sensation is diminishing again. We discussed multiple options available. And it was up to me as to the next step. So I'll get more radiation and begin cabozantinib. My tumors just aren't growing in places that we can do much about. Surgery is out of the question. So despite a reputation for severe SE's, cabo is my choice. Maybe this time I'll get lucky again.

    Similar results with Opdivo

    Fox - I had similar results with Opdivo - not quite the miracle my oncologist thought it was going to be.  It resolved some soft tissue tumors I had, however, everything else has progressed, including new mets to my hip bone and, of all things, a new met on my gluteus maximus (just proving this crap is a pain in the ****!), and a "watch and see" issue in my splenic vein.  IMO, it allowed things to spread like wildfire.  I have been discussing Cabo with my oncologist and, in the meantime, am back on Votrient which at least was helping me stay stable.  

    Sending you lots of good wishes and prayers. 

  • Teashea
    Teashea Member Posts: 89
    edited September 2016 #112
    well hell

    Dr says my liver enzymes are already climbing to a dangerous high and I might need to stop taking cabometyx. Dog gone it! I still do not have any side effects to speak of and I was in such high hopes. Going to stay on it and see what happens in the next couple of weeks. I hope everyone else is doing ok. How are your feet Fox?

  • rhominator
    rhominator Member Posts: 233
    Teashea said:

    well hell

    Dr says my liver enzymes are already climbing to a dangerous high and I might need to stop taking cabometyx. Dog gone it! I still do not have any side effects to speak of and I was in such high hopes. Going to stay on it and see what happens in the next couple of weeks. I hope everyone else is doing ok. How are your feet Fox?

    I'm sorry.

    Blasted. I'm sorry. I was/am so hopeful. I pray the new few weeks are good. Hang in there.

  • hardo718
    hardo718 Member Posts: 853
    edited September 2016 #114
    Teashea said:

    well hell

    Dr says my liver enzymes are already climbing to a dangerous high and I might need to stop taking cabometyx. Dog gone it! I still do not have any side effects to speak of and I was in such high hopes. Going to stay on it and see what happens in the next couple of weeks. I hope everyone else is doing ok. How are your feet Fox?

    What the heck Teashea!!

    Tell that liver of yours to back off!!

    Praying for you.....

    Donna~

  • APny
    APny Member Posts: 1,995
    Fox, hope your feet are

    Fox, hope your feet are better! Teashea, that sucks about the liver. Can they reduce the dosage?

  • foxhd
    foxhd Member Posts: 3,181
    Gee Tea,

    That stinks. Probably a dose adjustment will be all you need. I'll get labs friday. I feel weird but I think it is the gabapentin. My feet are healing but they are tender as hell. Everything is manageable so far on cabo. If they can safely lower my dose I'll be thrilled. I hope it's all you need. Good luck.

  • Teashea
    Teashea Member Posts: 89
    some good news

    My tests were better yesterday. Thank God for that. I am happy your feet are doing a bit better. Hope you are able to golf Fox. Rho stay on the votrient as long as you can if it is working to shrink your tumors. As soon as they took me off votrient my tumors grew right back larger than they were before I started the votrient. God bless everyone.

  • Jan4you
    Jan4you Member Posts: 1,327
    edited September 2016 #118
    Just want to let all of you,

    Just want to let all of you, MattVA, Teashea, Fox, Rhominator, Footstomper, know that I feel connected to you all (and others not mentioned here)!!

    I know its YOUR battle, your side effects, your results, still...know.. I care... so much!!!!!

    Hugs to you all, and continued healing, mind/body/soul!

    Jan

  • Teashea
    Teashea Member Posts: 89
    edited September 2016 #119
    Thank you Jan

    You made me cry, your very sweet and kind words mean so much.

  • foxhd
    foxhd Member Posts: 3,181
    edited September 2016 #120
    Teashea said:

    Thank you Jan

    You made me cry, your very sweet and kind words mean so much.

    jan is

    the sweetest woman. She is always ready to listen. Never ready to complain.

  • foxhd
    foxhd Member Posts: 3,181
    Cabo

    Well, thyroid needs adjustment. And one bp med. No big deal. Cabo seems to be similiar to votrient in as much as side effects are concerned. Except that the are only a third or a quarter as bad. Easily adjustable to. What a relief that is. More radiation to start on my rt. shoulder beginning next monday.That is the only source of pain that I have. Hoo Ray for me!!

    I've got to tell you that I feel very encouraged. I've been on a steroid for a week and it feels so good. A couple months back I never thought my neck and left arm would ever become tolerable. All that pain has been GONE! for a month! Now we'll nuke my rt. shoulder and I'm good to GO! I've got to repay the karma savings and loan. Payment overdue. Thanks all you wonderful shareholders. FLY.