Renal Cell Live!

Friday, December 14, 2007

Yum, Yum - Part 2

During the time that I was struggling with food on the Sutent trial, I kept a barebones food diary. I recorded everything that I ate, in what quantity, at what time, and whether or not I had any reaction. By reviewing the food diary, I learned that I was better off to eat small "meals" during the day, and I could easily identify foods that triggered nausea and vomiting. "Meals" could be a pretty broad term, and depended in part on what foods I reacted to. I set up a pattern that made sense to me and have stuck to it pretty well since - small helpings at "normal" mealtimes plus a couple of snacks during the day. I'm not always good about sticking to healthy snacks but for the most part I'm pretty conscious of what I'm putting in my mouth (except for anything from Andrew's!)

I have one kink in my requirements: two medications must be taken on an empty stomach (Nexavar and Levothyroxine). "Empty stomach" means no food for two hours before, and one hour after, taking the medication. I've gotten around that by scheduling those medications in mid-afternoon, between 2:00 and 4:00 p.m. Those taking Nexavar on the normal schedule (that is, 4 times more than I'm taking) have the additional burden of scheduling that medication twice. My buddy Bruce sets an alarm for 4:00 a.m., takes his Nexavar, and goes back to bed.

Lest you think that the "empty stomach" requirement isn't a big deal, ignoring it can alter how the drug is taken up by the body. If Nexavar is taken with food, for example, its effectiveness is reduced by 60-75%. Why go through all those side effects for nothing? Yet the "empty stomach" recommendation, the standard for clinical trials and oncologists' advice, may not be universal. A recent study suggests that, in some cases, drug efficacy may in fact be improved by taking it with food.

It's become a controversial subject in oncological circles, and more research will be required. Ohio State University is seeking grants to study the relationship between nutrition and cancer therapies; I suspect others will be delving into this too. The more they find out, the better off we are.

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Monday, December 10, 2007

Yum, Yum - Part 1

I have lived with one constant since diagnosis in 2000 - much of the time my appetite is suppressed. Often I will happily cook all afternoon and wait with anticipation for dinner, only to find that I'm not very hungry when it comes time to eat. It's not that I can't taste things, or that what I'm eating doesn't taste good, I just can't eat very much.

Over the past 3 years I've had two especially trying periods: first, in early 2005, when I tried the high-dose interleukin 2 therapy, and second, in late 2005, when I was on Sutent. High-dose IL2 is a very aggressive, unpleasant therapy that requires hospitalization and constant monitoring. One of the first things to go is the appetite; often, people are too nauseated to eat anything. I was lucky - I could eat and keep food down, but nothing tasted good. So I didn't eat much for two months while we tried that treatment.

While on Sutent I experienced lots of side effects besides internal bleeding. Nausea and diarrhea were chief among those side effects. I was hungry, and I could eat, but very little stayed down for long - generally within 10 minutes I was in the bathroom vomiting. I worked with a nutritionist at Cleveland Clinic to try to figure out how to combat this. I tried smoothies, the "BRAT" diet (bananas, rice, applesauce and toast), and eating 5 small meals daily. Nothing worked; of course I had to go off the drug eventually anyway, but I went through another 3 months of not being able to eat.

One rather amusing thing that happened while on IL2: I wasn't able to sleep much and couldn't concentrate, so watched a lot of TV to pass the time. One night I was watching the Food Network (tailgating/BBQ contests) and a nurse asked what was on. She laughed when I told her and commented, "Everyone on this floor is on IL2 or some form of chemo. Almost nobody can eat. Ninety percent of the time, when the TV is on, they're watching the Food Network."

One can dream, can't one?


Tuesday, December 04, 2007

Farewell, Phil

Phil Porter, courtesy Jamesline Frontiers MagazineTomorrow Saint H and I will be going to the funeral of a good, good man. Phil Porter, a fellow renal cell survivor, died on Saturday after two months of hospice care. He entered hospice after undergoing every possible treatment and trial; his disease was controlled to a certain degree but advanced inexorably over time.

Shortly after my liver resection in 2004, when I was recovering from surgery and feeling my lowest, friend and sister Monka passed along an article that Phil had written in the Columbus Dispatch on the Wellness Community in Columbus and the Renal Cell Networking Group. Phil was the Dispatch's business reporter, but also wrote a number of inspiring columns on living with cancer. The column I read couldn't have come at a better time; I was feeling very alone and burdened with an unknown enemy.

From that column came our involvement with the Wellness Community; there's little better than learning from other survivors. Phil was at the forefront of educational efforts and started our practice of bringing in speakers from the medical community, all in the hopes that we could better understand our disease.

Phil's words in this article are worth quoting:
"I've learned that my illness and fears often are not as bad as others'. And there is comfort in that other people are surviving and leading healthy lives. And even those who do not survive send the message that if they can meet death with dignity and courage, you can too, if necessary. The cancer community contains some beautiful people, and I feel richer for having known them. I feel richer for understanding the beauty of every day. But cancer still is a pain in the ass."

Phil gave me my life back. I will cherish his memory for as long as I live.

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Saturday, December 01, 2007

Seventeen and Counting

Yesterday was our 17th wedding anniversary. Amazing how fast the years have gone by; it doesn't seem possible that it's been that long. Time truly does fly when one is having fun.

We had a quiet Thanksgiving at friends D & M's, playing Texas Hold'Em poker and Trivial Pursuit until midnight. Their family includes a 13-year old fanatic poker player who can barely be persuaded to eat before the cards and chips come out (he won, of course). It reminds me of holidays at my grandparents in the 1960s when we would all crowd around tables in the living room to play a card game called "Oh Hell." I don't remember the rules but suspect these are close to what we played. Maybe we kids liked it because part of the game included swearing, something of a rarity in my family (at least at the time).

Saint H was deemed healed and given a release to return to work. He put in the full week this week. Jamie drew a scaled-down version of her masterpiece for him, and several others of the kids presented him with drawings. I know they all missed him (I certainly missed having him here).

Not having any of my own, I wonder how someone's serious illness is presented to children. I've no doubt there are all kinds of child-rearing advice books that give the basics, but I know I'd be at sea trying to explain it. I'm glad that I don't have to try.

Sandhill, courtesy USGSIt's clouding over and getting quite chilly, and it's supposed to rain and sleet tonight with rain all day tomorrow turning to snow on Monday. Now that's a lovely weekend forecast! We know the front is coming and the cold is here at last, as Saint H reported seeing 20-30 sandhill cranes gleaning soybeans in a field on his way home last night. They're finally on their way south, probably to Texas, to overwinter.

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