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Has anyone seen Chris’s Thyroid?

Posted by on April 19, 2013 in My Health Updates, Targeted Therapies (Sutent, Afinitor, Cabo, etc.) - 14 Comments

When we met up with Dr. Hammers yesterday, he seemed sort of surprised that Chris was standing upright. “Have you been feeling tired lately?” As a matter of fact, fatigue has been a major problem for Chris.  Yesterday was no exception, but Chris usually refuses to admit to problems with side effects. This time, however, even he admitted that perhaps, yeah, he had been a bit tired – not too much, mind you – just maybe taking four-hour naps in the afternoons, going to bed early, sleeping in late, etc. (This morning he slept in until 10 or 10:30 a.m., got up for a half hour when I made him eat some fruit and then fell asleep again until 2:30 p.m. When I woke him up again.)

Hans nodded.  “Yeah, your thyroid is in the tank.  It’s almost like it’s non-existent.  Like you accidentally left it at the bar and the bartender taped it up on the wall next to lost driver’s licenses in case you came back to get it. Did you do that?”

Before Chris could answer, Hans had already moved on with a discussion about doubling, no, tripling –okay, quadrupling his dose of synthroid, which controls the thyroid.

I could tell that Chris was still thinking about which bars we should hit to look for his thyroid when Hans pulled out the CT scans.  We weren’t originally scheduled to get a scan so soon, but Chris’s breathing has been a little strained lately. He tends to run out of air when he’s talking for long periods. And, you know, he’s usually talking to me, so get used to it, right? It’s like talking to a guy who you’ve punched in the gut mid-sentence. And, sure, I’ve done my share of gut-punches on Chris but not even I rabbit punch a guy when he’s down. So Hans wanted some scans to see if we could identify the problem. We’re happy to report that Chris’s tumors are still stable. They don’t appear to be shrinking anymore, but they aren’t growing and there aren’t any new mets – and we’re very grateful for that.

Side effects are a different story though. In addition to the extreme fatigue, Chris has been battling a lot of nausea, vomiting and general stomach discomfort. So much so that he’s lost another five pounds.  Which is not good. For a lot of guys, losing five pounds is cause for celebration. For Chris, whose already lost forty he doesn’t have any extra to spare.  We’re now working on a new eating routine in which he doesn’t eat meals. Sounds counterintuitive, I know. But he has trouble eating meals, let alone large meals. So instead we’ve gone to grazing, as one of his doctors suggested. He never really eats a meal, but throughout the day he snacks.  A cup of yogurt in the morning, some fruit an hour later, a single serving of macaroni and cheese around lunchtime, some peanuts or a protein bar an hour or two later, etc. So far it seems to have helped. That is, at least he’s eating it. The question is whether it’s going to put enough calories into him. We’ll see.

As we’ve said all along – Cabo is a tough drug. And because it’s still in trial, how it should be dosed is a bit of a mystery. In talking to Hans, other doctors and other patients, we think we’ve learned a bit and have a plan to try something that might make the drug more tolerable for Chris. We’re going to try a dose cycling program, similar to the way we took Sutent. As with Sutent, the toxicity of Cabo seems to be cumulative. Sutent’s answer to this was four weeks on the drug, two weeks off. We’re going to experiment a bit: As many weeks on the drug as Chris can take, then a week off. Then we start the cycle over again. We could end up with exactly the same dosage cycle as Sutent – four on, two off.

Nobody else has tried weekly dose cycling in the trials that we know of; so far they’ve only reduced dosage levels. So we’re a little a nervous about just taking things into our own hands (though in consultation with Dr. Hammers, he agrees that this is a good move to try, which gives us more confidence). Also, a friend of ours has tried taking the drug five days on and two days off, and he seems to be doing well. So that is also encouraging.

We’re hopeful that some of the changes we’re making are going to improve the way Chris is feeling.  We have finally found a drug that has stopped this cancer’s merciless spread. Now we just have to make sure it doesn’t turn him into a teenager – a skinny guy who sleeps in his room all day and looks like a cast member from the Walking Dead when he is up. We’ll keep you posted.


  • Barbara Woods

    Uncle Art and I would take the weight loss problem from Chris, if possible, but we do hope the cycling of Cabo helps him! There are ssssooooooooooo many people in our small community praying for Chris ( and his family), so we are always glad to have some positive news to share with them! Glad to hear that there are no new mets and that the tumors are stable.
    Love, Aunt Barb & Uncle Art

  • Mike Venable

    Glad to see another post, Chris. I’m also glad you’re getting some stability, in spite of the discomforts you’re experiencing. I have also lost about 45 pounds, but I was a fat bastard when all of this started. I’m trying to look at my Votrient trip as an opportunity to get back to my fighting weight, so I’m planning on losing another 20 or 25 pounds before I get alarmed. Your writing is as crisp as a baby Granny Smith apple and that brings me joy. I’m just so sorry that you’re so sick. Keep fighting, my man! Keep fighting. I’m still praying for you, Dena and the kids.

  • Dena

    I might have used a little poetic license ;)

  • Phil D

    Keep kicking ass Chris. You always remind me what it means to really be a warrior. I am having trouble with Inlyta but by comparison, I should be at DisneyWorld. I have lost 25 on Inlyta but you know I could lose more than you weigh and still be at a healthy weight! Keep blazing a trail for all of us.

  • Margo Braunstein

    Thanks for the update, Dena. I must say that your writing style is equally impressive. You and Chris are obviously a perfect match!
    Continuing Cabo stability is wonderful news, and hopefully the new dosing schedule will ease some of the side effects Chris is experiencing. I also know that getting the synthroid dosage right is quite a science.
    Keeping you in thought and prayer as you continue your battle with this wicked disease. So many of us are out here cheering you guys on!!!

  • mary pattison

    Sounds like a good plan. I assume he is on Zofran for the nausea. The only thing that helped me was pairing that with a mild steroid. I am so encouraged that the tumors are stable and that there are no new mets. Now just to control those side effects!

    • Anonymous

      Both Zofran and Compazine. We went on Prednisone today, so hopefully that will help too.

  • Pat Yovich

    Thanks for the update, Dena! And great meeting you “face to face” with Linda at our favorite pedicare place. Glad to hear the “good news” about Chris…it’s always the “good news/bad news” stuff….so, he needs to gain weight! Have a little suggestion: as I weight coach several who need to put some weight on, we use Meal Replacement shakes throughout the day as snacks etc in addition to any foods/grazing that they take in. Those shakes add in the extra calories and help raise that daily caloric count. We usually use 3-6 of those a day, May be worth a try. Feel free to contact me for any questions….
    You all continue to be in our thoughts and prayers! Make sure YOU get some rest, too! God Bless, Pat in Pooler

    • Anonymous

      Thanks for the suggestion, Pat. We do indeed use Ensure. I only manage one or two a day. I better step it up!

  • Pam Hill

    Chris, this is Pam Hill. You may not remember me. We used to work next to each other at the Times – a long time ago. I found an old basket that you gave me the other day. You had received something at work one day in it and, after I commented on what a nice basket it was, you gave it to me. Any way, it made me think of you. I’m so sorry to learn of your illness. From reading some of the comments, it sounds like you are truly helping so many people by sharing what you and Dena are going through. You’re still such a wonderful writer (Dena is too!) and brave to share it. Hug those baby girls and carry on. I’ll be praying for you and your family, Chris.

    • Anonymous

      Yes, Pam, of course I remember you. I particularly remember the time you took me on one of your crime scene reportings. It was a lot of fun. Thanks for the note — I hope you’re doing well!

      • Pam Hill

        If I remember correctly, I think a shovel was involved. That was an interesting day. I think the last time I talked to you was when you were connecting me with Asa as the two of you were driving across the Potomac. Funny the things we remember. We’re all well. Thanks for asking. A tornado hit our house in January, but we were all safe and we moved back in last month. I sure hope you can find a tolerable regimen with the Cabo since it sounds like it’s keeping things stable.

  • http://www.facebook.com/karen.jordanbramble Karen Jordan-Bramble

    My husband was diagnosed with stage 4 kidney cancer in Feb of 09. After he had his other adrenal gland removed in May of 2012, he has dealt with frequent nausea. Recently, he has had some relief with a Sancuso patch that lasts for a week. Thank you for sharing your journey with us.

  • Jennifer Fleming

    My mother at age 67 died from kidney cancer. Prior to this cancer diagnosis, she had bladder cancer. It seems that urological cancers or disorders run in our family on my maternal grandmothers’ side. One of my mother’s sisters also had kidney cancer in her fifties BUT she survived. I see here that your beloved husband had coexisting thyroid disorder. Is there a link? I want you to know all of you to know this is becoming an epidemic that I think there’s an environmental issues that contributes to certain cancers. (Although our genes play a part as well). I fully support your mission to raise awareness of renal cancers. It was heartbreaking to watch my mother in so much pain because the doctors literally had NO IDEA how to treat it. I wonder if cannabis which has been successful in treating other cancers, would be a viable option for renal cancer tumors?

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