Some random updates

It’s been quite a while since I’ve posted something new, so I guess it’s about time that I update everyone on the very latest. As a potential side effect of the radiation treatment, Dr. Mishra told us that if any part of my eyelid was hit by the proton beam, that I may develop a burn similar to a sunburn and that I may permanently lose some eyelashes, but that it would take a couple of weeks for those symptoms to set in. She wasn’t too far off. On day 15 after radiation was complete, I noticed that part of my lower eyelid was burning, and when I looked in the mirror, sure enough I had what looked like a sunburn on the inside edge of my lower eyelid. I only really noticed it when I would rub my eye. Angel, I wasn’t rubbing my eye, stop yelling at me! ;) We put the antibiotic/steroid ointment Tobridex on it a couple of times a day while it healed. Eventually the skin in that area peeled off, then it scabbed, and now that the scab came off, it looks much better now. Also, you have to look very closely to see it, but I did lose a very small patch of eyelashes in that same area. Not a big deal at all.

Onto some other random topics, you know how when something becomes part of your life all of a sudden you realize how common it is? Like when we bought a Montero Sport, we started seeing Monteros all over the road. Same with our MDX. Well, apparently the same is true with eye cancer.

The other day Angel and I had the TV on at home and that movie Bad News Bears was on, the movie where Billy Bob Thornton plays the coach of a terrible group of little league baseball players. It’s a pretty funny movie in general, and one which we have seen a couple of times in the past. But we noticed something new this time. At one point there’s a chubby kid in a wheelchair who shows up to practice with an eye patch on. The coach says, “Hey Hooper, what are you doing with that patch on your eye? Playing Pirate? Come to swab the deck, matey?”The kid replies with, “Mother says I have cancer of the eye.” It turns out the kid lied, and his cat had scratched him, but we thought it was funny that eye cancer got a mention on the big screen!

Eye cancer also got some airtime on NPR the other day. On a recent episode of Fresh Air, Terry Gross interviewed a famous neurologist named Oliver Sacks. If you haven’t heard of his name, you probably have heard about some of the topics that he researches or writes books about. His newest book, called The Mind’s Eye includes a couple of chapters about his own fight with choroidal melanoma over the last few years. It was a really interesting interview, about 30 minutes long. If you have time to listen to it, here’s the link: http://www.npr.org/templates/story/story.php?storyId=130732146. I ordered his latest book, and just got it in the mail yesterday, so I’ll let you know how it is.

I’ve read a couple of other books in the past couple of weeks. First, one called Live Strong, put out by the Lance Armstrong Foundation. It’s a compilation of stories written by cancer survivors. It covers the spectrum as far as type of cancer and age, and it was a pretty good read. A friend at work let me borrow her copy of it, and luckily it was a large-print edition. I already knew it, but that book really drove the message home that I’ve been really lucky compared to so many others out there.

The second book is called Cancer On $5 A Day – Chemo Not Included, by the comedian Robert Schimmel. My friends Heather and Lindsey gave me that book right before we left for California, and I just now made time to read it. H&L – if you’re reading this, thank you very much for giving it to me. It was one of the best books I’ve read in a long time. I very much recommend it to everyone. It’s about Robert Schimmel’s battle with non-Hodgkin’s lymphoma, back in the year 2000, and how his sense of humor helped him deal with the whole thing. It’s such an excellent balance of humor (sometimes pretty vulgar, but c’mon, who doesn’t appreciate vulgar humor?) and emotion. I was literally cracking up out loud at parts, and fighting back tears at other parts. Angel and I decided to go online and see if Robert would be performing in Arizona anytime in the near future because it would be funny to see him live. Unfortunately we quickly found out that after beating the crap out of a really bad cancer, he died from injuries sustained in a car accident only seven days before I found out about my cancer. That was a big-time bummer.

And finally, some thoughts about “experts”. I had a phone conversation with one of my doctors about two weeks ago, that sort of turned into an argument. I’ve already mentioned that my tumor biopsy came back as a “Class 1” tumor, meaning that I’ve got a low likelihood that the tumor will metastasize. That’s very good news for me because Class 2 tumors are extremely likely to metastasize. To date, no one has survived metastatic ocular melanoma, and the median survival time from the detection of the metastasis is less than a year if it goes untreated. With some experimental treatments out there, some people are alive with metastases (mets) up to seven years after first finding the mets.

So, the fortunate thing about my Class 1 tumor classification is that it has given me a lot of peace of mind, knowing that the likelihood that I will have metastasis is very low. The unfortunate thing about this classification is now that I am in a low-risk group for metastasis, I feel it’s going to be hard to justify to people why I should get follow-up scans to check for metastases (mets, as they’re referred to). Statistics from previous studies say that I’ve got about a 5% chance of mets over the next 8 years. 5% sounds really low, right? If there was going to be a car speeding down a road only 5 minutes out of every 100 minutes, would you not look both ways before crossing? I would. Would you play Russian roulette with a 20-barrel gun with only one bullet in it? I wouldn’t. When it’s dealing with my life, 5% doesn’t sound as low as I’d like it to.

My doctor that I was on the phone with told me that he wouldn’t recommend any sort of follow-up imaging tests, since I’m in a low-risk group. No PET/CTs, no MRIs, no x-rays, not even an ultrasound. He’s suggesting that I only get an annual liver function test. With this type of cancer, when it does spread, about 85% of the time it goes to the liver. Other times it goes to the lungs, the brain, the bones, and the skin. My main problem with his recommendation of only getting liver function tests is that it’s not that sensitive of a test. Some studies show that in about 80% of times where a PET/CT picks up a small metastasis in the liver, the liver enzymes all measure within a normal range. When the tumor is large, sure the enzymes will probably measure out of range, but by that time it’s definitely going to be too late to do anything about it. It will most certainly be too large to qualify for a clinical trial of any sort. When it comes to this doctor, I definitely appreciate everything he did to treat me so far, but I believe his recommendation for follow-up is a complete load of garbage. It makes me wonder how many people would not even question what he, or any other expert, says. “Well, the doctor says I only need a blood test once a year, so that’s good enough for me!” No thanks.

If anyone is interested, a journal publication that I just read the other day was a study trying to understand some aspects of how this disease spreads using a mouse model of spontaneous uveal melanoma (a more general term that includes my choroidal melanoma). In mice, they show that the cancer cells spread to all tissues throughout the mouse long before we can even detect the primary tumor. However, the disseminated tumor cells develop into growing tumors in the various tissues at very different time points. It’s not clear why the cells grow faster in some tissues than in others, but the authors show that it possibly has something to do with the immune system, specifically the action of CD8+ T cells. When the tumor-bearing mice were depleted of CD8+ T cells, the tumors grew in nearly all of the tissues very quickly.

It’s not known for sure, but I’m willing to bet that the same is true in humans. We do know that the tumor cells spread very early in humans (for those tumors that do spread), as removing the eye as soon as you find the cancer has no effect on long-term survival rates compared to just radiating the tumor. As in the mouse, the tumor cells in human metastatic tumors likely spread throughout the body as well. In humans they probably just tend to grow more quickly in the liver than in other organs.

To me, this shows that we all need to be proactive in our follow-up care. Sure, the statistics are on my side, but low risk is not the same as no risk. Realizing that some body scan do expose you to radiation that can be harmful, I intend to be as vigilant as I feel like I need to be.