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.

First follow-up appointment in Mesa

I had my first follow-up appointment yesterday, Friday, with the retinal specialist here in Arizona, Dr. DeSouza. I described to them the changes in vision I've noticed in my left eye, as well as the changes in the bright flashes of light that I described in a previous post. I also told them that when I'm looking at the computer screen, for example, and take turns closing my right then left eye, not only is everything blurry with my left eye, but also the letters on the screen are about half as big as they look with my good eye. Apparently I'm now temporarily near-sighted in the left eye.

The fact that the flashes that I've been seeing have become much more frequent and more intense means that there's more pressure on the retina. A side effect of the surgery and radiation that is going on in my eye is macular edema, which means there's swelling caused by an accumulation of fluid around the area of my macula. From previous images I've posted you could see a pocket of fluid immediately next to my tumor. Now there's even more fluid there. If the amount of pressure underneath that part of my retina gets too high, there's a potential that it could lead to either tearing of the retina, which would suck, or it could lead to even more of the retina becoming detached, which would also suck.

This is an image from an Ocular Coherence Tomography test that measured the thickness of my retina. OD (oculus dexter) means my right eye. OS (oculus sinister) means my left eye. I find it interesting that my "sinister" eye is the one that gave me cancer (haha). This test was only taking measurements over a total length of 6 mm, the approximate diameter of the macula. You can see the dip in the center, which is the fovea, the thinnest part of the macula. You can also see that in my bad eye, the whole thing is just taller, due to the fluid building up underneath. On the right edge of the image from the left eye, you can see the edge of the tumor.

Here's another image showing the data from a top-view. The little colorbar down below describes what thickness each color represents (measured in micrometers). The fact that my macula is not only raised, but also warped, explains why I can't focus on things with that eye.

So what can be done about this macular edema? Eventually it may go away on it's own, but it could take around a year to do so. With the risk of further damage to my retina, the doctor wanted to intervene. There's this drug called Avastin (bevacizumab), which was originally approved by the FDA to treat colorectal cancer. It's now used for some other cancers as well, like lung cancer. It's actually not what you might think of when you think of a drug; instead, it's a purified monoclonal antibody that binds to a molecule called VEGF (vascular endothelial growth factor), something that is needed for the formation of new blood vessels.

While it's not approved by the FDA for use in the eye, Avastin also helps with macular degeneration and macular edema. Interestingly, the drug company Genentech has a very similar drug called Lucentis which is FDA approved for treating disorders of the macula, but it costs about 40 times more (~$1600-2000 per dose). Genentech tried to keep doctors from using the cheaper drug to treat this eye condition so that they would instead have to use the very similar, but much more expensive drug. Luckily the eye doctors fought back really hard and are now still able to use Avastin to help save people's vision.

Anyway, to treat other cancers with Avastin, you would get a systemic injection, right into the arm like a normal injection. To help in the eye, however, Avastin needs to be injected....right....into....the eye, an intravitreal injection. I told the doctor that if this would entail numbing the back of my eye, I would have to punch him. While this injection wasn't nearly as bad as the one that caused my vasovagal reaction, it still wasn't an awesome thing to get.

They numbed the surface of my eye with some anesthetic gel for a while, disinfected the skin around my eye with Betadine (that orangey-colored stuff), then they also had to put a diluted Betadine solution into my eye. While I can appreciate the need to keep any sort of infection out of the inside of my eyeball, the Betadine was really uncomfortable once the numbing stuff wore off. It felt like my eye was slightly on fire for the rest of that day, right up until I went to sleep. Luckily it felt fine when I woke up.

So after the Betadine in the eye, the doctor injected some Dexamethasone (anti-inflammatory steroid) and Avastin into the eye, with two different injections. He did this just on the upper-left side of my iris. I felt only a mild-medium prick with each needle, otherwise it just felt weird knowing that there was a needle going directly into my eye. Then they flushed the surface of my eye out for a long while with saline to try to get all of the Betadine out. Despite about 5 minutes of flushing, it still burned for the rest of the day. It also made that eye water heavily for several hours, and messed with my sinuses (stuffy yet runny left nostril) for the rest of the day.

So now I'm back to two eyedrops (an antibiotic and a steroid) four times a day for the next four days. Yes, Angel still has to put them in for me! ;) The steroid drop is a milky-looking drop, and the weird thing about it is that it leaves a pretty gross taste in the back of my throat. Some of the drug must make it all through my sinuses and into my throat. I also have another follow-up in a month to see if some of the swelling has improved.

A few other random tidbits:

1. According to the American Cancer Society, eye cancers in general are by far the most rare type of cancer I could have possibly gotten. Out of the 1,529,560 estimated new cases of cancer in the US this year, only 2,480 of them will be some type of eye cancer (0.16% of all cancers). About 1,800 of those will be a choroidal melanoma (0.12% of all cancers). By comparison, breast cancer will account for about 209,060 new cancer diagnoses this year (13.67% of all cancers).

2. I've always had this thought, but it's gotten a lot stronger recently. Having had to deal with a cancer that I did nothing at all to earn, I can't help but wonder about the sanity of people who choose to do things that are absolutely known to cause cancer. I'll never understand that type of idiocy. Why would you purposefully bring that on yourself?

3. I've been taking that herbal supplement that I mentioned before (Essiac tea) for a little while now. It's only 4 ounces of tea for each dose, but it tastes pretty gross, and it's hard to get it down.

Biopsy results are in...good news!!

Some of you probably know from Angel's Facebook post, but I got a call yesterday from Dr. Char's office saying that they had received the results of the molecular and genetic characterization of the tumor. Luckily, mine is considered a Class 1 tumor. Basically, this means that my tumor is less likely to metastasize than if it were a Class 2 tumor. This is very good news, because if it does spread, this type of cancer is very difficult to treat, and unfortunately the statistics are not very good. Despite this finding, I will still undergo continued full body scans and liver function panels, probably forever.

Angel and I had a silly, brief session last night to make fun of how weak and stupid my tumor is...it can't even do it's job right! That had us laughing for a little while. :)

I've recently joined a couple of online forums and email lists for people who have choroidal melanoma or have had it in the past. It's another great source of information and support, but there are also some sad stories. Some people on the list have not had the good news that I've had, and are struggling with a much tougher fight than I've dealt with. My thoughts are definitely going out to them.

Treatment is over!

As I write this, Angel, Duke and I are driving back to Phoenix on Saturday evening. We left northern California yesterday and stopped in Irvine to spend a night and much of today with my cousin Stephanie. Good to see you again Steph! Thursday was my last day of radiation, and everything appears to have gone perfectly according to plan. They also typically have a 95% success rate with this treatment, so let’s cross our fingers that I’m part of that group.

I wrote my last post shortly after the first day of radiation. The last three appointments were at 2:00 in the afternoon, which was sort of a bummer because it didn’t give us enough time to do any significant exploring around the area. If we had a morning appointment, we could have had the entire rest of the day to go on a longer drive somewhere. Instead, we got to sleep in each morning, have a nice breakfast, do a little sightseeing before the appointment, then enjoy the free cocktail hour before deciding what to do for dinner.

Back to the last three days of treatment…here’s the picture of what it looks like having your eyelids retracted. The bottom one was the most important to get out of the way, since that is the direction from which the proton beam was entering my eye. This photo was taken just before she really cranked it down to get the bottom one much more out of the way.

I mentioned before that I didn’t feel anything at all when the proton beam was turned on. That’s still true, but it took a second day of treatment to realize something that I did notice when the beam was on. I was told to look very far up at a blinking red LED, as this would get my eye into the correct position. As soon as the beam was turned on, there was a flowing purple fog in the upper area of my vision that made it hard to stay focused on the red light. It may have been a trick of the imagination, but I don’t think it was; it’s more likely that somehow the proton beam was interacting with that part of the retina in some way that made me think I was seeing purple fog. Anyway, despite how hard I was trying to keep my eye still, it seemed as though it was drifting and following the fog. After a couple of seconds I would have to concentrate and refocus my eye on the red light. Because of this I was nervous that I was moving my eye way too much. After watching a couple of videos that Angel took of my eye on a monitor in the next room, I realized that my eye didn’t drift as much as I thought. Instead, I must have just been changing my focus without actually moving my eye.

After another discussion with Dr. Mishra, we also realized that the last description we got of the surgery may not have been entirely correct. Rather than cutting a slit in the sclera and feeding the tantalum rings between layers of eye tissue to the back of the eye, it now seems that Dr. Char may have simply sutured the rings to the back surface of the eyeball. We saw a photo of the rings in place on an eye on a research poster that was hanging near the treatment room. Here’s a picture that Angel snapped from the poster. Again, this is NOT my eye, but it’s probably very similar to what my eye looks like.

I then asked what the slit in the side of my eye was all about, and Dr. Mishra said that Dr. Char had to do that in order to grab on and turn my eye. I’m not sure that I’m buying that one, but we don’t really have a choice but to wait until we see Dr. Char again and ask him directly. Hopefully he’ll be in the mood to answer questions intelligently during our next appointment. I’ll keep you updated in case anyone else cares about those details.

After the last treatment session Dr. Mishra talked to us and said that everything had gone very well. We discussed which eye structures had received doses of radiation. Luckily I tolerated her yanking the heck out of my lower eyelid, so she’s pretty confident that I won’t experience the side effects of sunburn on my eyelid and permanent loss of those eyelashes. But, it will take a couple of weeks before those symptoms would normally set in, so time will tell. She was able to avoid the front of my eye so I shouldn’t have any problems with cataracts down the road. I’ve also got a pretty slim chance of developing glaucoma later on as a result of the radiation. I mentioned before that the pending vision loss will take place gradually over months to years, so we’ll have to wait and see what happens there.

Here’s one of the images that make up the 3-d reconstruction of my eye, as well as the doctors' calculations for which eye structures received which doses of radiation. I tried to label the important parts of the image, but it's easier to see what's going on when you look at all of the images/views together. Basically it shows that the tumor, a border around the tumor, and the area of retina that covers the tumor received the full dose of radiation, so it will likely be destroyed. The macula (which includes the fovea, responsible for center vision) got the full dose of radiation, so it will likely be destroyed. About 20% of the area of the optic disc got about a 20% dose of radiation, so my future vision will depend a lot on how the cells in that area handle the radiation. Also, notice that 33% of the surface area of my retina received the full dose, and about 40% of the retina received some dose of radiation. This most likely means that as a best case scenario, I’ll have a dark spot in my vision that covers approximately 33% of what that eye should see.

Physically, I still feel great. My eye is looking much better now than it did a week ago. It’s not yet normal looking, but it’s getting there. It still feels like there’s something in my eye, but it’s getting less annoying. The cut in the eye looks like it’s almost healed. As for my vision, I’m a little confused about what’s happening with the left eye. If I have my right eye closed, the top half of my field of view is gray, which I expected. The weird thing is that the rest of the visual field is pretty blurry. I did a fair amount of the driving from northern California the last two days, because I was going to have to get back behind the wheel at some point. The left eye is good enough that I can see cars, but I can’t read license plates or road signs with it. If I have both eyes open it makes things sort of blurry, and sort of like I have double vision, but it's not really that bad either. If I ever had any doubt about what I was seeing, I just closed the left eye. Luckily my right eye is really good. Don’t be jealous, but it’s possibly one of the best eyes in the world. When reading a menu the other night I realized that there is a point where I can focus with my left eye. Anything that is about 6 inches in front of my face is crystal clear. My left eye vision in dim light conditions is much worse than in brighter conditions. As I mentioned before, my vision will be gradually changing, so right now there’s no telling how it will end up.

As for the bright flashes that I saw at the beginning, they’ve change somewhat. They are very frequent now, at least a couple of times a minute on average, and they move around as they are fading away. There’s no preference to whether they drift clockwise or counter-clockwise, but they morph as they move, sort of like a lava lamp blob.

Hopefully the results from the genetic workup of the tumor biopsy will be back in a week or two, so we’ll know a lot more about the activity of the tumor, etc. at that point. Otherwise, now we just wait. Both Angel and I are heading back to work tomorrow.

I'll still update this periodically, but probably less frequently than I have been. If anyone has questions about anything, feel free to email me or leave a comment on the blog, and I'll write back.