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Cabo?

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

No one talks about cabo or cometriq. Not recently anyway. It is promising when many other kidney cancer drugs have failed. With it comes the SE's of diarrhea, etc. The bigger question is why would I be asking?

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

 just don't tell your wife and I wont tell my husband!Kiss

  Summer will be here in no time so its a good thing you are working on that vintage Honda and probably shining that Harley of yours, and oh, remember to tune up the guitar for some good ol' blue grass playing!  As for the rest, not that I want to put a lot of pressure on you but you know how so many of us look up to you and care for you.  We are hoping, wishing, praying and sending good vibes that your treatment will have positive results this time around.  Im wishing with all my heart you have a good Summer like you did last year.

Im having a difficult time lately with both my parents health so I come around not so often as usual.  I'll be checking on news from you. Please be well.

angec's picture
angec
Posts: 924
Joined: Mar 2012

Hmm.. makes me wonder what is going on.  That seems like too much for it to be cancer.  Must be inflammatory. Any side affects with the cabo?

 

 It looks like mom has to be removed from Votrient after almost 4 years. She was ned then a node will show, now show, show not show. Seems like the two that show on and off coincide with infections. So, votrient worked good in that matter. But, she has started to get brain symptoms, seeing people, talking to them etc. I a not sure if that could be the medicine. But, each time to refill it the pharmacy always asks if she is having mental issues.  Where is TW when you need him? He would know about that. Does anyone else have a clue? Mom is also 83 but it came on so suddenly it seems weird.

I am praying for you, Fox.  Glad the pain is gone.  Keep us posted! ELF!  xxoo

Eliezer2
Posts: 85
Joined: Aug 2012

not sure how much track recod there is

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Wow. This has been something. Sarah, I am betting my life on everything being inflammed. Many pow wow's with my care givers. Believe me when I tell newbies that I am so sorry that you are here. I know how scared you are. How do you make decisions?  I'll also tell you that after a while you get less frieghtened and much smarter. That may be it's own problem. It's a good thing that I feel ready to fight. I'm getting the sbrt/gamma knife to my spine. And 2 more nivo infusions then scan.  The radiation is mandatory. Neurosurgeon will do myelgram for mapping. Then it will be a one shot procedure. This is the second course thru my neck and the last.  Risks we won't bring up here.  I don't look forward to reliving last years struggle or worse. No options here. But I'm ready. Well, maybe more ready next week, or november, or never but I don't get to choose. I am playing my hand for extending quality of life. Cards are on the table.

APny's picture
APny
Posts: 1998
Joined: Mar 2014

You're always in my thoughts. I have the feeling those cards on the table will be a good hand!

Srashedb
Posts: 482
Joined: Dec 2013

 

Smart patients has a very interesting article with Q and A's at a symposium in San diego which validates your current plan and what I have learned about TKIs for my husband .

it was posted today and the symposium was this weekend.

Sarah

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

With regard to Cabozaitinib: I'm looking over my notes from Kidney Cancer Association conference in Los Angeles

States "may eventually be a front line drug" and "superior to Affinitor" written down

Limelife50's picture
Limelife50
Posts: 476
Joined: Nov 2011

Damm sorry Fox will keep my fingers crossed hope u are still eating good and keeping your weight up

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

I'll wish you just one thing: May those cards on the table be a Royal Straight Flush!!

Good luck!! 

Dave

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Thinking about you, Foxy! Always! Don't flirt too much with those nurses....they don't need those distractions Wink

Big hugs

Jojo

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

last week to add to the mapping for my sbrt. Now as a therapist, I've seen hundreds and hundreds of patients post myelogram. But I never had one. It was an awesome experience. I am very impressed. The big lesson here is the same that we discuss regarding finding a doctor who does a lot of nephrectomies, not 2 or 3 a year. This Dr. Johnson must do hundreds and hundreds. Anyway, the entire process went flawlessly. Whatever drugs they used were perfect. Went home a couple hours later with only a tiny band aid on the procedure site. I even drove home.  My biopsies a few years back should have been so easy.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

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

pamstayner's picture
pamstayner
Posts: 111
Joined: Apr 2014

Not sure what a myelogram is, so will look it all up.  If you treated patients after one, it might be something that if not done perfectly, it leaves one in pain?  

I am also holding well with the Nivo and feel SO good.  I don't have anything but knee and shoulder pain a few days after, and although not really that awful, since I ordinarily feel SO good, it gives me something to complain about... 

Isn't Cumadin the blood thinner you gotta get lots of blood test done often to keep the right dosage?  I think I remember that from taking care of my Aunt.  I am still taking twice a day Lovenox shots... bruises all over my middle are UGLY ugly... I want the PICC line out, but am told no because if there are clots attached, it would dislodge them.  Sounds fishy to me... the blood thinner is supposed to disolve any clots... and after a month I think I should be clear.  Oh well, what do I know... I'm just learning.

My scan resutls and Oncolgoy appointment are May 26th.... looking for good stuff... and for you too...

 

Be well Fox..... FLY

 

 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

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~

Eliezer2
Posts: 85
Joined: Aug 2012

i am now on cabo

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

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

Airie
Posts: 45
Joined: Mar 2016

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
Posts: 47
Joined: Jul 2016

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
Posts: 315
Joined: Jul 2012

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

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

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?

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

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

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I put on about 40lbs after steroids following IL2

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

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's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

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

dancnbear1
Posts: 86
Joined: Dec 2013

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

dancnbear1
Posts: 86
Joined: Dec 2013

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.

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

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
Posts: 86
Joined: Dec 2013

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's picture
Teashea
Posts: 89
Joined: Feb 2016

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

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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
Posts: 86
Joined: Dec 2013

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's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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
Posts: 58
Joined: Mar 2012

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's picture
angec
Posts: 924
Joined: Mar 2012

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

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

JerzyGrrl's picture
JerzyGrrl
Posts: 761
Joined: Jun 2016

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. 

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

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's picture
Teashea
Posts: 89
Joined: Feb 2016

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's picture
cheatinlil
Posts: 202
Joined: Jun 2014

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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
Posts: 86
Joined: Dec 2013

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------

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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

moon_29
Posts: 6
Joined: Jun 2012

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
Posts: 6
Joined: Jun 2012

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. 

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

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!

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