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Cabo?

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  • hardo718
    hardo718 Member Posts: 853
    edited May 2016 #62
    Thanx for the education Fox

    I learn something new from you all the time.  You're my hero.  Glad you are feeling well overall and enjoying eating again.

    Bless you,

    Donna~

  • todd121
    todd121 Member Posts: 1,448
    foxhd said:

    Things can take so long

    I guess I'm halfway there. First, if the nivo isn't working, how come I feel so good? My activity and health are great. Food is so damn good. But, upper extremity pain and weakness are a problem, so, I look forward to next week when I get the SBRT to my spine.  I had a nivo infusion today and with it came a tumor flare up a couple hours later. I realize that I get many of these tumor flares. A month ago when I had my knee drained, it hemorraged because I was on coumadin. If I wasn't on coumadin, it would have just hurt. So we got a little misdirected because of the bleed. A couple days back I tossed some garbage and with it my shoulder. Same type of acute pain. So I may have this shoulder added to my radiation. Follow up scans won't be for 3-4 more weeks. Thats ok with me. One thing is for sure and that is that I don't really mind these acute episodes because otherwise I feel great. Not like the votrient where I was always sick. Pain has been manageable with a couple oxies a day and the occaisional trip to the dispensery.

    Thinking of you

    I hope for the best for these treatments and no repeat of last time.

    Thanks for keeping us in the loop. Please do.

    Hugs,

    Todd

  • Eliezer2
    Eliezer2 Member Posts: 85
    i am now on cabo

    i am now on cabo

  • Airie
    Airie Member Posts: 45
    I know this post is old. Just

    I know this post is old. Just catching up on reading. I noticed this one discussion has been read 11538 times!! As one who doesn't post frequently but reads this site religiously, I had to comment. Even when we feel what we have to offer may only be good luck, good karma or a place to dump feelings and frustrations- it means enough that it's read thousands of times by others. Thanks to all who contribute and support this site. Such an affirmation to me we're in this together...

    Or did the site get over 11,000 hits just to find out what's up with Fox?:)

  • Kangaroorex
    Kangaroorex Member Posts: 47
    Hope the fox is still doing okay

    I can speak from experience that the immunotherapies can cause inflamation, mine tumor shot up almost 20% in 4 weeks! then is stayed stable for 8 months and finally shrunk 50% and stablized for another year before starting to grow again.  my drug was a PDL-1 which had no name while i was on it, but it seemed to work pretty well.  the problem with tumors in bad places are no one is willing to wait and see if the problem is temporary or not. 

    Hang in there, man! You're one of my heroes!  I want to live long enough to retire, even if i dont get much beyond that. 

  • I am alive
    I am alive Member Posts: 315
    Fox, how are you doing?

    i just came across this thread. Been a while. Howard you? Sending you light & love.

  • Teashea
    Teashea Member Posts: 89
    God bless everyone

    Foxhd I hope you are doing better. Waiting for my cabozantinib to arrive. And wondering why my alk phos is 213. It keeps climbing. After one bone tumor, bone scan is not showing any more bone cancer. Praying for some good results after IL2, votrient, and nivolumab have not worked for me and have left me partly paralyzed. Also I have gained 45 lbs through these past 3 years of treatment has this happened to anyone else?

  • Footstomper
    Footstomper Member Posts: 1,237
    Weight

    I put on about 40lbs after steroids following IL2

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

    God bless everyone

    Foxhd I hope you are doing better. Waiting for my cabozantinib to arrive. And wondering why my alk phos is 213. It keeps climbing. After one bone tumor, bone scan is not showing any more bone cancer. Praying for some good results after IL2, votrient, and nivolumab have not worked for me and have left me partly paralyzed. Also I have gained 45 lbs through these past 3 years of treatment has this happened to anyone else?

    me too

    I've had/have  the same problems. Same drugs. neuro issues. Several bone mets. However I'm still down 25-30 # from a year and a half ago. You're not alone. I've taken my cabo for a week. So far, so good. Blood and office visit tomorrow. We'll see where this goes. I'm expecting good things.

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

    me too

    I've had/have  the same problems. Same drugs. neuro issues. Several bone mets. However I'm still down 25-30 # from a year and a half ago. You're not alone. I've taken my cabo for a week. So far, so good. Blood and office visit tomorrow. We'll see where this goes. I'm expecting good things.

    Fox

    Good luck with your visit tomorrow. I hope things are even better than you wish for.

  • Teashea
    Teashea Member Posts: 89
    edited August 2016 #72
    foxhd said:

    me too

    I've had/have  the same problems. Same drugs. neuro issues. Several bone mets. However I'm still down 25-30 # from a year and a half ago. You're not alone. I've taken my cabo for a week. So far, so good. Blood and office visit tomorrow. We'll see where this goes. I'm expecting good things.

    Please let me know

    I am very happy to hear the cabo is going well so far. Please let me know how your blood pressure and tests go.  I decided to start tonight so my boyfriend will be home with me just in case there is a problem.

    Have a blessed weekend,

    Tea

  • Teashea
    Teashea Member Posts: 89
    Pleased to tell everyone

    There are very few side effects from cabometyx after 4 day's. My blood pressure is a bit on the high side. I pray it stays this way and shrinks my tumors. Fox hope it is still working well for you. Everyone have a blessed day. 

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

    Pleased to tell everyone

    There are very few side effects from cabometyx after 4 day's. My blood pressure is a bit on the high side. I pray it stays this way and shrinks my tumors. Fox hope it is still working well for you. Everyone have a blessed day. 

    Great News

    Sounds like you've had a hard enough time, you deserve this. Long may it last! Good luck

  • danbren2
    danbren2 Member Posts: 311
    Fox fly!!

    I know you will be flying as always! Have scans scheduled in Sept for brain tumors, also taking stereoids to help reduce swelling! Keep the faith Fox we are here for you!

                                                                Love and prayers for good health!

                                                                 Brenda

  • Eliezer2
    Eliezer2 Member Posts: 85
    foxhd said:

    Donna

    I am currently on steroids for inflammation and it has relieved all pain. As to adding a diet componet of anti inflams, it would be a drop in the bucket. Besides it is far to late to use supplements to affect my prognosis. Living pure from day one is too difficult because of the chemicals we have absorbed in our life time. Our body is an enviornmental filter damaging our dna and random cell mutation happens. I exist at the stage of managing symptoms for as long as I can. And hopefully with as few side effects as possible. 3-4 years ago I said,"Bring it on!" Now I say, "Lets hang on as comfortably as I can."

    But NEVER count me out. I have remarkable healing powers. There is a loss from the battles but I tolerate a lot.

    beware of steroids

    they gave me diabetes and caused shoulder pains

  • dancnbear1
    dancnbear1 Member Posts: 86
    edited August 2016 #77
    cabometyx

    I have been on it for about 2 months with some side effects the most violent are the blisters that form on the bottom of feet and get so painful at times that I have problems walking. Fatigue is big due to lack of sleep but that is mostly because of the quantity of Prednisone that I am on which keeps me up late at night and has put almost 90 pounds of excess weight on my body. My last CT scan showed a mix of results. no new sites which is always good, some sites grew but minimumly, and some sites didnt grow so I am sticking with it for another cycle. The weight gain, extreme joint pain that I have, and lack of sleep are results from my first trial and the fact that my thyroid no longer works and I no longer have a functioning Adrianal Gland (Addisons Desease). If I could only get a semi good night of sleep and get the weight off of me I would be OK. I can deal with the pain becasue of the regiment of meds that I have going to help keep me ahead of the pain. Any suggestions on weight loss while taking stress level quantities of steriods? MY PRAYERS AND THOUGHTS TO ALL AND WISHING NOTHING BUT THE BEST WHILE FIGHTING THIS DISEASE!

  • foxhd
    foxhd Member Posts: 3,181
    cabo

    Entering my 3rd week of cabo. So far the most important thing is that it's not nearly as bad as votrient. Yet. Some belly upset. Some loose stool. Fatigue.Very manageable so far. Most importantly, since stopping nivo, my pain is greatly diminished. This is appreciated. Let's see how I feel in a couple months. I find it amazing that I have been thru several episodes of intense pain over the past few years. Then before you know it, I'm whacking golf balls again. I think this time will be different as the tumors in my vascular system are a bit threatening. It will probably be a "here today, gone tomorrow" sort of thing. Oh well. I wish I didn't need any pain medication but I bet I use half of what I would be using if it wasn't for sweet mary jane. It helps my stomach a ton, and food still tastes great. Besides, the colors are groovey man.

  • Teashea
    Teashea Member Posts: 89
    Good morning

    Did everyone have a nice weekend? One and a half weeks into the cabo. I am happy so far. As you said Fox the votrient was much worse. Fox, and Dancn, I was started on only 40mg. Going to increase to 60mg if all keeps going well. What dose are both of you taking? Also is anyone having high alk phos? mine was 213 last blood test. Dancn sorry to hear about your feet. I read about jell socks sold on Amazon that offer some relief from the hand-foot syndrome. Gaining 45 lbs has been very hard, so I know how you feel. Friends and family say you look so healthy! This is dispite the fact I can hardly walk. Some even ask I thought you were supposed to loose weight when you have cancer. Very hurtful with all the bs we go through. Fox I am a Colorado girl the Mary Jane helps a lot.

    Sending prayers and good thoughts up for everyone.  

  • dancnbear1
    dancnbear1 Member Posts: 86
    edited August 2016 #80
    foxhd said:

    cabo

    Entering my 3rd week of cabo. So far the most important thing is that it's not nearly as bad as votrient. Yet. Some belly upset. Some loose stool. Fatigue.Very manageable so far. Most importantly, since stopping nivo, my pain is greatly diminished. This is appreciated. Let's see how I feel in a couple months. I find it amazing that I have been thru several episodes of intense pain over the past few years. Then before you know it, I'm whacking golf balls again. I think this time will be different as the tumors in my vascular system are a bit threatening. It will probably be a "here today, gone tomorrow" sort of thing. Oh well. I wish I didn't need any pain medication but I bet I use half of what I would be using if it wasn't for sweet mary jane. It helps my stomach a ton, and food still tastes great. Besides, the colors are groovey man.

    Fox, have been on constant

    Fox, have been on constant pain meds for almost 3 years (my pain doesnt seem to be any where near your levels). The clinical trial i was on totaly crapped out my joints to the point it just hurts to move but for some reason lately I am doing better. Could it be the new pain meds Im on (morphine) or the change over to Cabo. I am currently at the 60mg mark and seem to be ok. Im able to adjust to the occassional runs, the foot syndrome issues , high blood pressure that averages about 155/90, some flashes of anxiety, and joint pain. Last CT had no new sites, 1/2 spots grew, and 1/2 stayed the same. I have these lovely sub cutaneous tumours (or large bumps) that stick out of my arm, next, hip and rib cage but they too seem to be stable. All in all the CABO seems to be working but as I said I just need to get on way to get my weight down and my energy level up. Every time i hear you talk about a walk or a round of golf I get so jealous but Im still hear and considering they told me I be gone by now Im pretty friggin happy.

    Always glad to read your stories and how well you cope with the crap that gets tossed at us all. Keeps me as positive as I can be. Good luck and keep on fighing.

  • dancnbear1
    dancnbear1 Member Posts: 86
    Teashea said:

    Good morning

    Did everyone have a nice weekend? One and a half weeks into the cabo. I am happy so far. As you said Fox the votrient was much worse. Fox, and Dancn, I was started on only 40mg. Going to increase to 60mg if all keeps going well. What dose are both of you taking? Also is anyone having high alk phos? mine was 213 last blood test. Dancn sorry to hear about your feet. I read about jell socks sold on Amazon that offer some relief from the hand-foot syndrome. Gaining 45 lbs has been very hard, so I know how you feel. Friends and family say you look so healthy! This is dispite the fact I can hardly walk. Some even ask I thought you were supposed to loose weight when you have cancer. Very hurtful with all the bs we go through. Fox I am a Colorado girl the Mary Jane helps a lot.

    Sending prayers and good thoughts up for everyone.  

    Teashea, Im at 60mg but like

    Teashea, Im at 60mg but like you started low and worked my way up. with reagrds to my feet I go with lotions, epson salt baths, and when the blisters get bad I pop them (doctors would love to hear that). Once I pop them the skin drys up and they peel and then I wait for the cycle to start again. They have told me when its back to call in so they can lower my dosage but Id rather deal with the foot pain and fight the cancer with the high dosages then the other way around.

     

    God bless and good luck.

  • 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.