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Cabo — A Vacation Destination for Side Effects

Posted by on April 2, 2013 in My Health Updates, Targeted Therapies (Sutent, Afinitor, Cabo, etc.) - 12 Comments

My daughter, Josie, is an exquisite sadist. One day she will make boyfriends and nations tremble, wondering what they had done to bring down such terrible wrath of female.  One of her favorite phrases is: “Does that hurt?” It’s like hearing “We’re from the government and we’re here to help.” You just know something awful is about to happen. One of her favorite experiments is to slowly drive her sharp little fingernails under your own unsuspecting fingernails … further, further … driving them with a calm determination … until you squeal.

“Does that hurt?” she innocently asks.

“For the love of mercy, child, yes – please stop!”

So she stops. For a minute. She snuggles up warm against you, her large kittenish eyes saying Gosh, I’m sorry and you let your guard down and start to fall asleep with her cradled in your arms … and then a flash of hot white pain. Does that hurt?

Having survived such agony – both emotional and physical – I feel like less of a man to complain about the mere soreness in the tips of my fingers caused by Cabo. But, then, I’ve never felt too manly to complain.

I’ve been on Cabo for over a month and feel that I can now report back regarding side effects. One side effect is Hand-Foot Syndrome. Many of you taking Sutent or other TKIs are already familiar with this particular side effect. Despite being described in medical literature as causing blisters on the hands and feet, I have no blisters. Instead, I have callouses. (I went to see a dermatologist about it and, being an odd effect of chemotherapy-type drugs with which she seemed unfamiliar, she googled “hand-foot syndrome.” It stated the condition causes blisters. Looking skeptically at my foot, she said — nope, can’t be Hand-Foot Syndrome. Is this what medicine has come to?) Looking at the callouses, you barely notice them. But you do feel them.  It feels kind of like having a BB lodged just under the skin. Innocuous looking but painful nonetheless. I have one on the sole of my foot, on the padding just above the arch, where most of your weight lands when you are walking. I have another on the side of my other foot, again rubbing against the side of the shoe at exactly the place where the most friction – and discomfort – occurs. The blisters are caused by this friction — your feet hitting pavement, your hands twisting a bottlecap. I also have sensitivity in the palms of my hands, especially when holding or turning things or when they are under hot water. What’s new, however, is the extreme sensitivity in my fingertips. If I don’t grow all of my fingernails long – like an overambitious coke addict who isn’t satisfied with just snorting out of a pinky nail – I’m constantly yelping. I cut my nails yesterday and am paying for it now, sniveling and cursing the finger gods as I type, a synapse hurtling toward my brain each time fingertip hits key, shouting This hurts, you masochistic cretin, stop it!

Nausea is also more of a problem on Cabo than it was on Sutent and other TKIs. I generally wake up feeling sick each morning. First thing each morning I take a round of Cabo, Oxycodone (for coughing and breathlessness) and Compazine (for nausea). After letting the meds do their thing and resting, reading the newspaper, I start to feel better within about an hour. Some days, though, it lasts throughout the day. Other times I actually get sick, but that happens less commonly. Fatigue is also a problem, though an unpredictable one. Some days I feel fine, others I’m worn out. I always get tired after a few hours of exertion. It’s unclear if this is a byproduct of Cabo or of cancer, though. The standard GI problems come with Cabo, as they seem to with every other drug ever developed. And my hair is beginning to slowly lighten and turn white, as it did on Sutent. The next time I cut my hair it will be more obvious to others. Some people said my premature white hair on Sutent made me look distinguished; others, especially after my eyebrows turned white, said I looked crazy. I’m not sure why I can’t be both, a kind of distinguished crazy. I could say utterly inappropriate things, but with a gentlemanly air. Your mad uncle from the South.

It appears that the side effects may be cumulative, as is the case with Sutent. They have gotten a little worse with each passing day. Maybe I’ve just been having a bad run lately, or maybe the toxicity of the drug is pooling in my veins. With Cabo still being so new, there is no set dosage or structure for taking the drug. Oncologists may need to look at cycling the drug as they do with Sutent — for example, four weeks on and two off.

Though a nuisance, the Cabo side effects are welcome. They are a reminder that not long ago, side effects were the least of my problems. In January I was praying for a treatment, any treatment, that would work – something to lift me out of the valley of shadow in which I found myself. Cabo, whatever its side effects, was the answer. Although I still can’t play golf (the ultimate test of my returned health), today I not only can get out of bed but can get out of the house for extended periods. I’ve travelled to Captiva, FL and Savannah, GA and though each set me back a little they were worth it. Each day I’m testing the boundaries of trying to return to a more and more normal schedule.

My most recent scan shows that the drug is still working, with the disease stable – meaning that the tumors neither shrunk nor grew. I was a little greedy and wanted to see more reduction of the tumor burden in my lungs, to see the cancer retreat further, but I am happy that, for once, it didn’t grow. There were two complicating factors that will make the next scan important. One was that there was the beginning of some necrosis in a number of the tumors – meaning that the tumors were experiencing cell death at their centers. This could be potentially good news if it continues, with the tumors ultimately shrinking in on themselves as their centers die. At the same time, we saw some tumor growth in the lymph nodes. It was minor and could be possibly a result of swelling due to necrosis. We’ll just have to wait and see on the next scan.

So the question remains: If, with the help of Cabo, I survive cancer a little longer, can I still survive Josie? This morning she stood on both my feet and asked if it hurt. Absently, reading the newspaper,I said no. Wrong answer. Next she leaned back on the heels of her feet and then squatted down on her strong little thighs, digging deep into the bones at the top of my feet. How about now, she asked in a sing-songy voice?


  • cbparker23

    Chris and Dena–Your blog is a great service and an inspiration to others, including my better half, Tom. After a diagnosis of Stage IV renal cancer, Tom received 13 targeted-radiation treatments in December for a rapidly-growing tumor on his forehead the size of half a lemon (the other two tumors, in his liver and near his spleen, were slower-growing). We saw no shrinkage. He enrolled in hospice, and for a month he had no treatment at all. Then, in early February, a friend heard about a compound called cannabidiol, which was shown in vitro and with lab animals to be effective against certain aggressive forms of cancer. (No human trials yet, but it is FDA-approved as a supplement; if you google “cannabidiol cancer” you will find plenty of information.) Tom has been taking it for two months (in the form of hemp oil, purchased from Dixie Botanicals in Colorado; cost $200 for 30 capsules, one taken daily), and the forehead tumor has shrunk to about one-fourth its original size. We don’t know if the shrinkage is a delayed reaction to the radiation or is due to the cannabidiol. It might be worth your trying, not to replace the treatment you are getting, but in addition to it.

  • Tom Schranck

    Its good to hear from you Chris. When I read about your experiences and what you so bravely endure, it makes me feel like I have had a fairly easy go at all of this so far. you’re certainly in my thoughts and prayers. Best to you and Dena and your adorable girls. Tom.

  • Janet, KC warrior

    I know you are kind of a clinical trial of 1. I’m surprised you have no breaks from cabo. Maybe a regimen of 3 weeks on, 1 week off would give you some relief. Keep Josie away from your feet. Maybe you should get her a voodoo doll she can torment. Best always to all of you.

  • Shaun

    Hey Chris,
    Glad to hear you’re stable. That’s the golden ring for now. Hopefully shrinkage will come later. Sorry about the sides. Sounds like you need to discuss a break or dose reduction. I know that’s a scary thought when something is working, but as my doc says, the most important thing is to keep us on the drug as long as possible. I just reduced to a 2/1 schedule due to toxicity. A little nervous about June scan, but we’ll see. Welcome back to the Snow White hair club for men!

    Oh, and you might want to put parental controls on your Netflix account. It sounds like Josie has watched Rendition a few too many times.

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

    Chris, signs of improvement and hope are encouraging. I admire your courage and sense of humor. We think of you constantly and have special prayers for you at my church. Tons of love are coming your way from the Fusco family.

  • Minnie

    It always interests me how people respond to your posts. Your generally lighthearted blog of course sets the tone for the responses so now, having justified myself and my response… are you seriously complaining about nausea in the morning????? Gazillions of women have endured and will endure this minor indignity for the GREATER good. So be strong and for all our sakes please endure!

    Hope you do feel better and that the growths shrink and that your daughter’s ministrations make you stronger by the day.

    Best wishes to all of you


  • Richard Catlett

    Your post today regarding blisters on your fingertips reminded me of when I was taking Sutent. Within a week of starting Sutent (50 mg) , every callous on my body starten to slough off. Started with my feet and soon they were baby-skin pink and super sensitized. Then I picked up my guitar: YIKES; where are the callouses I had build up over the years? I didn’t play for 18 months…then took awile to build back up after I stopped taking Sutent. Ya just never know about these side effects…

  • Liz Monahan

    Oh, that Josie… she sounds very similar to my daughter Carly… And standing on your Cabo-calloused feet – yipes! I had those kind of callouses with Sutent and you described them perfectly. I have 3 tiny ones on one foot now on Inlyta, but they are barely noticeable. This time it’s my hands. I developed blisters on the inside joint of my left thumb and both middle fingers, with the right thumb developing later. All ended up peeling and all but the left thumb are only calloused a bit now. The left thumb does get red and sore again from time to time, but not as badly as the first time. I do get sore spots on my fingertips too, especially where I use my iPhone. :-) GI effects on Inlyta have been rough on me, but I keep on keeping on because of how well it’s holding the cancer at bay. Like you, second scans showed stability and while I was really hoping for more shrinkage, I gladly took the results I got. I’m glad it’s still working for you!

    Oh and Minnie, as someone who has experienced nausea from pregnancy and cancer drugs, I’d take the first kind any time. :-)

  • Bill

    How many mg is your dose? I have read they are still getting great results in other indications at 40mg. Maybe if you are at 60 you could do every other day at 40, or just move down to 40mg.
    Of course if you are at 40 I guess you could do 20 every other day.
    Secondly, my wife and I are pretty good cooks who live in Arlington near the hospital and every month we make a meal for a family that could use a hand. Would you and your family be interested?

  • Kim

    Chris, thank you for your blog. Five years in the kidney cancer battle myself, diagnosed at 39yrs old, stage IV. I’ve been on Sutent, Votrient and Inlyta all with some degree of stable then on to growth. I just took a 5 week break to get ready for clinical trial at NIH, Votrient plus a met-inhibitor (ARQ-197) but was scanned right before start of trial and found to have new tumor on T2 that requires immediate radiation. Rather than wait til I qualify for trial again I will start Cabo next week.
    I appreciate your info and humor and strength for still living life.

    • Dena Battle

      Kim — Sorry to hear about the T2 met. We almost did the ARQ-197 trial but decided to wait for cabo! I think you made a good choice. Are you being treated in the DC area? Feel free to contact us off blog: dena_battle@yahoo.com

  • Dona

    Hey Chris and Dena,
    I think of you all daily and wonder how things are going. We are right there with you fighting, praying, wishing for an answer to rid Danny and Chris and all the others of that monster. We go Monday to MD Anderson to get randomizied for the PD-1 trail. Hoping we get the good stuff. Prayers, hope and light. XOXO
    Dona and Danny

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