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Carbo question

cheatinlil's picture
Posts: 202
Joined: Jun 2014


My husband just got upped from 40 mg to 60 mg of carbo. He has been on it 11 days.  The side effects were tolerable at 40 mg but he cannot tolerate 60 g. My question is does it get better in time? Does he just need to stick in out? if not we're ready to go back in and tell the doctor that is quality of life is not acceptable and we're gonna switch to our next course of treatment which is immunotherapy.


I'm sorry I haven't been around for a while.  I read from time to time here. I appreciate you all.

foxhd's picture
Posts: 3183
Joined: Oct 2011

I couldn't tol. 60 mg. Went to 40 but it would still become too much after 3-4 weeks. I'd get a little psychotic and had arrythmias that hospitalized me twice. I take 40 mg every other day for about a year now. I still take an extra few days off when ever I need to. I decide when I need to. I wish I knew to skip doses when on votrient. TKI's are tough drugs to tolerate for very long. That is why you need to experiment to find your effective minimal dose. Cabo has actually been very manageable for me. Better than every other treatment so far. It was easy to plan ahead and skip a few doses to attend events or go camping. I may re-try nivo for a while to launch an assult on my tumors but cabo will be my tki of choice if indicated.

cheatinlil's picture
Posts: 202
Joined: Jun 2014

Thanks Fox. I will ask the doctor if we can experiment with days off some to tolerate it better.

Abunai's picture
Posts: 173
Joined: Oct 2016

I'm still fairly new to cabo. I'm taking 40mg per day and I do feel fairly crappy, but it's not intolerable yet.

Did the oncologist give a reason for upping his dose? Did he continue to show progression or did the oncologist just think he could tolerate more? I'm just curious.

cheatinlil's picture
Posts: 202
Joined: Jun 2014

Hi abunai 

One of his tumors grew on 40 mg.  That is why they upped it.. Some decreased and some were stable.  We go back in 3 months for scans and that would determine if we were going to immunotherapy. 

6 months ago my husband weighed 224 now he is 211. That also concerns me.

Thank you for posting . God bless you on this journey

Posts: 11
Joined: Aug 2017

Seems to me that each person's experience with side effects is different. I've been on 40 mg cabo for six months with good efficacy and what minor side effects I've had seem to have largely subsided. But it's clear from other posts that others have had very different experiences.Thing to remember is that its widespread use is fairly recent, so SE predicitons and prognoses are based on still fairly scarce information.

Has your husband tried other TKIs? 

Anyway, better treatments are in the pipeline. Keep fighting and good luck!

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