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Home » My Health Updates » Sutent, Round 1: Dental Harpies, Wood Glue and Forrest Gump

Sutent, Round 1: Dental Harpies, Wood Glue and Forrest Gump

Posted by on October 15, 2011 in My Health Updates, Sutent, Targeted Therapies (Sutent, Afinitor, Cabo, etc.) - 4 Comments

 

I’ve never been afraid of the dentist until now. Of course, that might be due to the fact that I did not always go to the dentist as regularly as I should have when I was younger. When I did go in, the nurses would peer into my screwed-open mouth and I would hear the breath go out of them. I was always startled by the quasi-religious fervency of their reaction, the way they would hurl back on those rolling stools, as if punched in the sternum by the invisible hand of God, and fall to the floor speaking in tongues. After spraying Lysol or some other disinfectant into my mouth, most would eventually return, curette and cross in hand, to clean my teeth.

As an adult I’ve been better. It’s difficult to drag my children into the dentist’s office if I refuse to go myself. Kate already has a file under her bed tagged “Dad’s Hypocrisies.” By the time she is thirteen, it will require a filing cabinet. No reason to give her more ammunition than I have to.

So you know it took some legitimate terror for me to call the dentist’s office recently to cancel my appointment. However, I find that I am often spitting blood when I brush my teeth. A few of Sutent’s side effects are sensitive gums, mouth sores and excessive bleeding. Together, they make a hat trick of dental hell. And that savage harpy my dentist has hired to serve as his hygienist has no compassion. She alternates between humming and lecturing me about poor flossing habits while slicing ravines in my gums.

After discussing this with my oncology team, we all agreed that it would be wise to reschedule my teeth-cleaning appointment until I finished my first cycle of Sutent.

Which, I would like to say, I have now done.

All in all, the side effects have been quite manageable. I’ve heard of some of the trials that others have undergone with Sutent. I’ve received notes from fellow kidney cancer patients who have pointed out that in the last two weeks of taking the drug they have experienced fatigue so great that they couldn’t get out of bed. Or Hand-Foot Syndrome so bad they couldn’t walk. Nausea so bad they couldn’t go far from a bathroom.

I’ve experienced a number of the side effects, but at a minimal level. While I do have some trouble with sensitive gums, I don’t have mouth sores. While I have felt the effects of fatigue toward the end of the day, I’ve never felt I couldn’t put in a full day of work. I do experience nausea at times, but only a hint of it and never resulting in vomiting.

The most significant side effects have been high blood pressure and loss of appetite. I have a prescription to deal with the high blood pressure, so no big deal. The loss of appetite is perhaps the most annoying. It is the result of simply not being hungry, but also the result of one other side effect – a complete loss of taste. Everything I eat tastes like wood glue. I was never a foodie, so there are worse side effects, but you know you’ve entered black days when it’s a chore to eat pizza. Some of you may remember my obsession with Chick-fil-a sandwiches whenever I went to Duke for a treatment. They opened one here in Crystal City and I went by the other day and I might as well have ordered a discarded toupee for lunch. It would have tasted about the same.

I’ve flirted with Hand-Foot Syndrome, but the symptoms were largely brought on by my own stupidity. You can learn a little about Hand-Foot Syndrome at the ridiculously literal website ChemoCare.com. It explains that exposure of your palms and soles of the feet to heat and friction causes drug leakage into your capillaries, resulting in redness, soreness and blisters. The site is pretty specific about taking steps to modify your “normal daily activities to reduce friction and heat exposure [their emphasis].” Suggestions include:

Avoid exposure of hands/feet to hot water, such as taking long showers and washing dishes (Are you reading this, Dena?)
Avoid activities that apply pressure on the palms of the hands or soles of the feet
Avoid jogging, aerobics and long walks
Avoid garden tools, household tools such as screwdrivers, and tasks that require squeezing the hands on hard surfaces
Using knives to chop food may cause excessive friction (I assume their point here is that you should avoid it.)
The list does not specifically advise against playing golf, but … perhaps I should’ve taken the hint.

Anybody who plays golf knows that most of the physical activity of the sport involves friction on the palms (mostly fingers, if you’re any good, but I’ll have to stick with palms) and the soles of the feet. Watch a golfer driving the ball off the tee. Check out the twisting motions of the feet, all the friction on the soles. Or consider the golf grip, the repeated friction of swinging the club. In short: If there were one activity that could be devised specifically to exacerbate Hand-Foot Syndrome, it would be golf. So, of course, I feel the need to step up and play more.

The result? Friends and colleagues may or may not have noticed my newfound effort to make band aids a fashionable accessory. I went out and played golf on Monday and my hands are still blistered. It hurts to wash them, not only from the blisters but also from a general tingling/burning when I use hot water or shave. People may have also noticed that they must walk a little slower when they are trying to talk to me, due to soreness in my feet. And, for good measure, the twisting of the knees that accompanies golf, when mixed with Sutent, results in some pretty sharp joint pain.

As I’ve said, though, these are relatively minor side effects compared to what others have gone through. So I think it’s important to report this: I’m doing great.

And to my friends who are looking to start Sutent, the even better news is this: You are not as stupid as I am. You aren’t likely to do the very things that the doctors tell you not to do. Don’t take up clogging. Rock climbing may not be your best bet for weekend excitement. And stay the hell away from the golf course.

As for me, though, I do stupid things. Ask Dena. I’m Forrest Gump with a sand wedge. I have to tell you, though: I birdied a 502-yard hole this weekend, and that tends to soothe any blisters and put a little flavor back in my food. There’s something to be said for maintaining control over your body, even if that means abusing it a little.

  • jimmy stewart

    my name is jimmy stewart and i have kedney cancer i am from north carolina i have been takeing sutent for 2 weeks and 3 days so far i am doing ok sometimes my fingers tingle some and the bottom of my feet burn ifeel nausea some but have not vomit any . i guess i am doing ok thank god i have not been sicker than i have i feel fatigue about 3 or 4 pm ever evening

  • layna

    my dad has kidney cancer and has taken sutent for 2.5 years. he certainly could tell you what it’s like.

  • Layna

    my dad has kidney cancer and has taken sutent for 2.5 years. he certainly could tell you what it’s like.

  • Jim Stewart

    my name is jimmy stewart and i have kedney cancer i am from north carolina i have been takeing sutent for 2 weeks and 3 days so far i am doing ok sometimes my fingers tingle some and the bottom of my feet burn ifeel nausea some but have not vomit any . i guess i am doing ok thank god i have not been sicker than i have i feel fatigue about 3 or 4 pm ever evening

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