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One Person's Cabo Vacation

shepp
Posts: 11
Joined: Aug 2017

Hi. First time poster here, and in all likelihood I won't be back regularly. But I did want to share my experience. 

Back in June of last year I was diagnosed with stage 4 renal cancer with numerous bone mets. After the initial panic, I started to use this board as a research tool. Then treatment started. I had one very threatening spinal lesion that was taken care of by five easy TrueBeam radiation sessions. But that left the rest to deal with. No surgery. My doctor put me on 40 mg of Cabometyx daily and an Xgeva shot every month, using Cabo as a first-line treatment before it got officially approved as such. Then I started reading reports from Cabo users and they scared the hell out of me. All those horrid side effects!

But here I am 5 months later, doing really well. My first post-treatment CT and NM bone scans showed marked main tumor and met shrinkage. The latest ones show no progression and perhaps increasing necrosis. My labs, which had been all out of whack, are now within normal range except for slight anemia. Nagging bone pains, sometimes extreme, and flank pain are pretty much all gone. No more night sweats, no more fevers. Appetite up, weight gain, return of libido.

And side effects? Mild-to-middling gastric distress in the early days, now mostly gone. And a more sensitive tongue. Smelly farts. That's it. That's all. I do use Udderly Smooth twice daily to prevent HFS and take a stool softener to keep things moving, but that's the extent of my side effects prevention. Most days I honestly can't tell I have cancer at all. Maybe mildish fatigue, occasional depression, vague aches. But I generally feel as good as I did a year or two ago, before the cancer symptoms started.

Is this temporary? Well, yeah, most likely, and then I'll have to switch meds. Will other people's experience be the same? Not necessarily. But after reading a bunch of really scary things about Cabo, I wanted to say that for me it is, at least for the time being, something of a miracle drug. I'm doing so much better than I expected. And I love squishing the Udderly Smooth on my feet.

The important thing, trite as it might sound, is not to lose hope.

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

I recently started a clinical trial that includes 40mg Cabo per day, and an infusion of Keytruda (currently only approved for lung cancer) every three weeks.

I'm encouraged to hear about your positive response.

I hope to have similar results.

It's nice to have an excuse for the smelly farts, too.

Thanks!

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

Thanks for the encouraging report!

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

So glad it's working well for you and with minimal side effects. That's very good news.

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

So glad to hear it is working for you. Please keep us posted if you can.

shepp
Posts: 11
Joined: Aug 2017

for your good wishes. I hope I've been of help to someone.

DAC677's picture
DAC677
Posts: 60
Joined: Feb 2017

Always love hearing the good news!

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