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Home » My Health Updates » I’m Back — and Back on Cabozantinib

I’m Back — and Back on Cabozantinib

Posted by on May 3, 2013 in My Health Updates, Targeted Therapies (Sutent, Afinitor, Cabo, etc.) - 23 Comments
quasimodo

I’m back. Relatively speaking.

In our last blog post, Dena outlined how I had begun to wilt under the accumulating toxicity – and resulting side effects – from Cabozantinib. And that we decided to try a Sutent-like regimen of four weeks on the drug and two weeks off to allow the body to get a break from the toxicity. And how that idea backfired on us. I went on a sudden downward spiral, almost as if the disease – freed of its Cabo straightjacket – came back with a vengeance. We quickly aborted the cycling idea, and I went back on the drug.

It’s unclear if the spiral was a result of a “flare up,” as Dena referenced in her blog post, or whether there was fluid leaking into my lungs, which Dr. Hammers thought could be a possibility. Nobody knew for sure but all agreed it was best to get back on the drug.

And I’m glad to say that going back on the Cabozantinib worked. My breathing and coughing have returned to its pre-break levels. We’re still in a bit of a pickle about what we’re going to do as the side effects start mounting again. The worst of them is nausea, vomiting and fatigue. And also a condition similar to (perhaps is) gastroparesis, in which your food doesn’t properly digest and kind of just sits in your stomach in an acid-melted pool. When you stand up, you can literally hear the liquid sloshing in your stomach. It sounds like lifting a water container upside down to install it in the office water cooler. Glug, glug, glug. That in itself tends to make me nauseas, and it makes eating more difficult than it already is. Cachexia is a constant threat, and gastroparesis doesn’t help matters.

So what to do? One approach is to just suck it up, make some adjustments and live with the side effects. For example, we could increase the amount of nausea medication I’m taking. Currently I tend to take nausea medicine when I’m starting to feel … well, nauseated. However, that approach can result in me taking the meds too late and I get sick anyway. If we know that nausea is going to be an increased problem moving forward, we could start taking the pills on a maintenance schedule — say a Compazine every four to six hours, regardless of how I’m feeling. This might help knock out the nausea before it sets in. Or at least mitigate it some.

Another drug I could take is one called Reglan, which could help with the gastroparesis. The problem with this drug is that it can cause Tardive dyskinesia – which means “delayed involuntary movement.” It’s described as causing “slow jerky muscle movements, trouble with balance or walking … tremors or shaking in the arms and legs … and uncontrolled muscle movements in your face (chewing, lip smacking, frowning, tongue movement, blinking or eye movement).”

Great. I’d be the guy who limps up to people with a drunken leer, Quasimodo-like, and lick their eyeballs. I’d apologize immediately – and then slap them in the face and slowly retreat backwards shouting obscenities the whole way. I’m rude enough on my own; I’m not sure I need this additional support.

Another approach would be to continue experimenting with Cabozantinib’s cycling. We now know that several weeks on and one week off doesn’t work very well. However, we could try going for say six days and then taking one day off. Or taking a day off once a month.  Who knows — there’s a whole playground’s worth of hooky that could be played here. The challenge is that the drug is so new to the market – having been rushed through the approval process to provide relief to sufferers of medullary thyroid cancer – that clear guidelines for dosing and scheduling haven’t been put into place yet. That’s why the drug is still largely in clinical trials. Working with Dr. Hammers, we’re just kind of feeling our way as we go.

We’ll keep you updated as we continue experimenting. In the meantime, as a way to blow off steam, I’m going to walk around kicking people in the groin. They don’t know whether or not I’m on Reglan.

  • Job Serebrov

    Mari was covering the congressional hearing and heard you testify yesterday to her surprise. I caught most of it also.

    Job

  • Mary Pattison

    Good luck with fine tuning the Cabo. I am confident you will find the right schedule. As to the Reglan, I’ve cared for a lot of folks on it and never saw TD. (Did see fair share of it in people on antipsychotics.) Don’t be the first!! Great plan to be pro-active with the Compazine and Zofran is an even better anti-nausea drug. Sorry, guess once a nurse, always a nurse! So glad S/S are better!!

  • Gail N

    Chris and Dena – I am glad you are back on track. How bout what Cody does, 80mg 5X2 per week. He himself has said he could never do this drug straight on and the 5X2 is working really well to keep SE’s at a minimum plus we know the drug is working. Just a thought.

    • Anonymous

      We’ve definitely given this some thought too, Gail, and are considering something like that in the future should the side effects become less manageable again. Thanks!

  • Liz Monahan

    Oy, always something, isn’t it, Chris? I can just imagine how disturbing the sounds emitting from your stomach must be. Sounds like you have some good ideas to combat the nausea, which on its own can make your days hellish. Interesting about the Reglan. I’ve known women who took it off label to increase their breast milk supply (really!) and nobody ever mentioned the TD effects. So if you go that route, I hope you don’t really have that side effect. However, you could still kick people like you suggested; just maybe wear a T-shirt that says “I <3 Reglan" while doing so. But you realize this means that you CANNOT kick Dena!!! I'm thrilled for you that the scary breathing troubles have subsided for now. Hopefully the flare was a one-off.

    • Dena’s mom

      Oh my, now instead of kicking folks in the crotch…he will be trying to breast feed babies! : )

  • Connie Abel

    Hubby battles nausea so he takes his nausea medication as main trance and it helps a lot, although there are days when it is not as effective. I give him ginger ale and soda crackers to help also.Chris, you can tolerate a lot when you have so much to live for.

  • Tom Schranck

    If by chance we do meet ever, please refrain from kicking me in the groin. I can take a good blow to the shin…but please leave the boys alone. I hate getting kicked there. Hope you get it sorted out Chris. As always, your writing makes me laugh and your attitude makes me happy.

  • Karen in Ottawa Canada

    Kick’em hard – I’m sure they all deserve it for something! You continue to inspire and amaze me! Hugs

  • Mike Venable

    Chris, I think it might be time to break out the bong. Nausea control and increased appetite. Whatever you do, though, just know we’re all there with you. Cheering you and Dena on and keeping you in our daily prayers. Is Cispa passes, don’t tell anyone I posted this.

  • http://www.facebook.com/frank.fusco.10 Frank Fusco

    Chris, we continue to keep you and yours in our prayers.

  • Bill W

    Chris,

    What dosage are you currently on? If it is above 40 maybe you could reduce it to 40. Several studies have shown it to still be effective.
    Good Luck, and thanks for keeping us informed.

    • Anonymous

      We have considered dropping the dosage. I’m currently on 80 mg. We did drop to 60 before going off the drug. We seemed to deteriorate a little on 60 before taking a steeper plunge during the break. I worry that the depth of my tumor burden in my lungs leaves almost no room for further progression. I guess that’s why we’ve stuck to 80 mg — fear of even a little progression.

      • Bill W

        I am sorry to hear that 60 is not as effective as 80. My offer of dinner is still good, however!

  • Teresa Shehada

    Hi Chris! I am astounded at your courage as always. God bless you and your family!

  • Anonymous

    Just as an FYI, the FDA required Reglan to post a “black box warning” regarding the potential side effect of TD. You can learn more here: http://www.webmd.com/digestive-disorders/news/20090227/metoclopramide-drugs-get-black-box-warning – Luckily, I think it’s a small percentage of people who get it.

  • pierre

    Have you ever heard of Gerson Therapy it’s online check it out

  • Barbara Woods

    So glad the breathing is better! I was on Reglan once, and it never caused me to hit or kick people….DARN!! Will keep you and all of your family in our prayers as you continue to fight this dreaded disease. Love you!
    Aunt Barb and Uncle Art

  • http://www.facebook.com/cheryl.razzostepina Cheryl Razzo Stepina

    Hi Chris and Dena: I have been following your blog for a year now. I came across your amazing journey while I was researching my husband’s RCC Sarcomatoid Stage IV diagnosis. I saw the writing on the wall from day one of my research, but I have preferred your writing much, much more. Unfortunately, my beautiful, brawny husband was taken down 8 months after diagnosis by either a rare attack on his remaining kidney by Sutent, or Telebrix before a routine scan. All I can say, is Thank You…both of you. You still give me strength in your words, today. We were a lot like you are, as a couple, and humour was key. 7 months after Dale’s battle, and the remaining unit, of our teenage daughter, and twin boys, and myself, are doing our best to carry on. I just wanted to send my love, and my thanks, to you both. You amaze me more than these words can convey!!! xoxo

    • Dena Battle

      Cheryl – thanks for your kind words and for continuing to follow the blog. We’re so sorry to hear about Dale. You and your kids are in our prayers. Sending all our love and good wishes right back at you! Dena

  • Hunter Wolfe

    Glad to hear you are back on the Cabo, and praying that the gastro gets gone like pronto. Hugs, Hunter and family.
    H. Wolfe
    COLE’s Prayer Team
    http://www.colesfoundation.org

  • sb

    Glad Cabo is helping. You may also want to talk to your oncologist about nivolumab. Some patients have experienced very long-term durable responses.
    http://www.clinicaltrials.gov/ct2/results?term=nivolumab&Search=Search

    • Dena Battle

      Thanks so much! We actually tried Nivolumab before it was cool – or even called Nivolumab – in fact we tried it three names ago when it was just good old MDX-1106. It didn’t work for Chris, but we’re so exciting about how well it’s working for others!

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