Wednesday, October 12, 2011
Saturday, September 10, 2011
When I last wrote I was right in between two MRI appointments: one where there was an interesting spot that showed up on my liver, and the follow up MRI that all of the radiologists requested, just to make sure that the spot wasn’t an aggressively growing metastatic tumor in my liver. After the follow up MRI, we were very happy to hear that the spot appeared to be the exact same size, so it was likely really just an atypical hemangioma. From here on out, I am still planning on having an abdominal MRI done every 6 months. Since my last one was in mid-April, I’m looking at mid-October for my next.
Also since my last post, I’ve had a couple of eye appointments with Dr. DeSouza in Mesa, and one trip to San Francisco for a follow up with Dr. Char and his team. The consensus: my tumor is ever-so-slowly continuing to shrink, which is news I’ll take any day. On the other hand, when Dr. Char last saw me in early July, he said that he was starting to see early signs that the radiation damage to my retina was setting in. He wanted to see another fluorescein angiogram to see if there were a bunch of new blood vessels or not. If there were, it would be time for another Avastin injection into the ol’ eyeball. The damage wasn’t advanced enough at that time, but he did tell me that my extra visual loss was on its way. Remember, during my radiation treatment my entire macula (responsible for focused, central vision) was blasted by the proton beam, and part of my optic nerve was hit as well. Dr. Char told me that I should contact his office when I notice any visual changes setting in.
It was about two weeks after we got back to Phoenix that I started noticing the changes. It’s a little hard to describe, and the changes are definitely most obvious when I’m looking at text or at something that has organized lines (like window blinds, for example). The best way to describe it is that in the lower half of my visual field, I now have a bunch of small spots that appear to be smudged. The smudges would probably also be visible in the upper half of my visual field, but I cannot see anything up there :). Here’s an image that shows approximately what I see out of my left and right eyes (click the image for a larger view):
About a week after I started noticing the smudges I contacted Dr. Char’s office, who reported back that I should get in to see Dr. DeSouza within two weeks. I assumed that since the visual changes were setting in that it would then be time for some Avastin to try to slow down the damage. Dr. DeSouza proved my assumptions to be incorrect. Avastin would be used to prevent neovascularization (the formation of new blood vessels), which is not yet occurring in my eye. Instead, I’m growing some cotton in my eye.
I have what they describe as cotton wool spots. These are caused by retinal nerve fiber layer microinfarcts, which means that some retinal nerves are failing to receive a blood supply, due to small microvessels dying off as a result of the radiation I got. When the nerves fail to get their blood (the carrier for nutrients and oxygen), the nerves themselves die and essentially puke out their cytoplasm. This puke sticks around in the eye and looks like little pieces of cotton. These are my little puke spots:
The visual acuity in my left eye still measures at 20/20, but rather than reading the whole bottom line in the eye chart with ease, as I can do with my right eye, this time I had to look at each letter individually in order to read them with my left eye.
I’ll let you know when I know more. I hope everyone is doing well. Thanks for reading!
Sunday, March 20, 2011
I meant to update this thing a few weeks ago when I again had new news to share, but it’s sometimes hard to make time to sit down and write everything down. As I write this, I still feel great. I’ve started exercising again, which is nice because I feel like crap when I’m inactive. I still see the flashes of light all the time, several times a minute. I’ve had no choice but to just get used to them, so that’s exactly what I’ve done.
I’ve got a couple of noteworthy updates, and a funny story, since my last post back in January. I had an appointment with Dr. Desouza (local retinal specialist) on February 11, just to assess any possible visual changes and to take some ultrasound measurements of the tumor. Going into the appointment, I could tell that my visual field had not yet improved, but that the quality of my remaining vision had improved. This was verified by the doctor; in fact, the vision I do have in the left eye measured back at 20/20 again at that appointment. I think this determination was made based on the fact that I could read the lowest line on their eye chart with the left eye. While I could figure out what all of the letters were, they weren’t exactly in focus like they were with my other eye. So either that 20/20 concept is a very, very rough estimation of how good your vision is, or my right eye has much better than 20/20 vision.
It was obvious during their visual inspection that my retinal detachment had completely corrected itself, as all of the subretinal fluid was gone. So now, the only thing keeping my retina from its original shape is the growth underneath it. To me, it’s interesting that my visual field hasn’t improved knowing that most of the retina is back in place. And I guess I still see the flashes because that part of my retina is still being stretched somewhat due to the tumor being there. The ultrasound measurements indicated that the tumor had continued to shrink. Dr. Patel (intern? fellow? I can never remember which is the correct term) measured the maximum thickness this time at 4.1mm, while Dr. DeSouza measured it at 3.7mm.
Angel and I talked to him about our desire to actually have follow up testing, despite Char’s input. Since it had been coming up on 6 months since my original diagnosis, Dr. D ordered a chest x-ray and blood work for a liver function panel. We told him that based on everything we knew, we wanted an MRI of the abdomen (focusing on the liver). He wanted us to go ahead and get the x-ray and blood work, and come back in six weeks to have a discussion about the MRI. His thought seems to have been that if we had these sensitive tests, and had false positives show up, we’d have to deal with the consequences of that: the emotional (stress, etc.) and logistical (what to do next, biopsy, etc.).
A few days later on February 14th I had an appointment with Dr. Zwerin, my PCP in internal medicine, just related to a persistent sore throat that I had (which is now long gone). While there, I talked to him about MRIs to follow up on this eye thing and he must have agreed with me because he gave me a prescription for an MRI. No offense to Dr. D, but I’d rather just have the test than wait another 6 weeks wondering. Interestingly, something seems to have changed in my insurance plan so I didn’t even need pre-authorization for the MRI this time.
So, I had the chest x-ray and blood draw on a Thursday, then had the MRI on a Saturday morning. Chest x-ray results were normal: no sign of metastasis, both lungs appear symmetrically aerated. A granuloma (apparently harmless little mass…the term granuloma seems to be somewhat useless because it’s used so generally) within the base of my right lung appeared stable compared to my x-ray in September. I didn’t even know I had a granuloma…guess I forgot to ask for a copy of that x-ray report. The blood work also came back with all liver enzymes in the normal range.
The Saturday MRI appointment was interesting. I went to a new place I hadn’t been to before because they were open on Saturday, and they had a 3 Tesla MRI machine (stronger magnet than the one I was in previously). They asked if I had any metal implants, so I had to disclose the tantalum rings on my eyeball. Understandably so, the MRI tech was hesitant to let me jump in the machine with no paperwork indicating these rings were safely compatible with a 3T magnet. I had to use my phone to pull up some articles on Pubmed to show him. I’m appreciative that he was cautious about this…better safe than sorry. The MRI went well. The bolus injection of contrast agent (Eovist, a relatively new contrast agent, still based on the standard gadolinium) went smoothly this time and didn’t cause the needle to pop out of my vein and give a large, somewhat painful subcutaneous injection of contrast agent like the last one did, so that’s always good. The MRI machine is programmed to take a series of images before the contrast agent is injected, and then to repeat scans at very specific intervals after injecting the stuff. This gives the docs an idea of how the Eovist is traveling into the liver and being taken up by the hepatocytes. In a soothing female voice, the machine repeatedly said “Hold your breath.” I would inhale and hold it. Then after 20 or 30 seconds, “Relax.” Luckily the tech had told me beforehand that “relax” meant “breathe,” because I wouldn’t have thought that was obvious. As the magnet is on and clicking away, the MRI tube turns into a mild wind tunnel. According to the tech, the 3T magnet is so strong that it can actually have an effect on your body temperature, so the superfan kicks on to keep things cool.
I got the data on disc and had the radiology report sent to Dr. Zwerin. I made the mistake of loading up the data on my computer and looking at it, and I was thinking “Hmm, I wonder what that spot is. And that one.” If you find yourself in that situation, don’t do a Google Image search for liver metastasis and try to compare with your images. It’s just not a good idea if you aren’t trained in what you are looking for. Anyway, on Tuesday I had my doctor fax me the official report. It basically says that there are some small benign cysts in my liver, a couple of hemangiomas, and one other spot that is likely an atypical hemangioma. Based on my clinical history, the radiologist is recommending a follow up scan just to make sure that nothing is changing size.
By the way, a hemangioma is basically a benign growth of blood vessels that has no known cause and almost never requires intervention. I thought about it for about 30 minutes after reading the report, and then decided to send an email to Dr. Takami Sato’s care coordinator. Dr. Sato is in Philadelphia, and he is widely considered one of the leaders, if not the leader, in the treatment of metastatic ocular melanoma. I sent Renee a quick note briefly explaining these findings, and asked her if, from their experience, liver metastases are ever primarily misdiagnosed as hemangiomas. Remember, while the likelihood of this being a metastasis is very low in my case, about 50% of these things do metastasize and in 100% of those cases, it is fatal; it’s just a matter of how long you can fight the good fight. I’m not trying to sound over dramatic, I’m just trying to emphasize why I really thought time was of the essence when it comes to knowing something. Renee wrote back to me very quickly (she is so awesome that she wrote me back within minutes, from home, on her day off) to suggest that I send in as much of my data as I could get to Dr. Sato’s office for his team’s review. They meet every Monday to discuss new cases and updates on old cases, and Renee needs everything by the Thursday before to get all info entered into their hospital’s system so it’s ready to review and discuss. So I made a bunch of phone calls and sent a bunch of faxes (I think it’s embarrassing that so much business is still done by fax these days…what old technology) over the next couple of days.
I should mention that I did all of this, stupidly, without telling Angel that I had even heard back about the MRI. My intentions were good, as my thought was to protect her from any worry until I knew whether there was really something to worry about. But keeping that secret was actually stressing me out more than wondering what the unknown spot was. On Thursday I ended up sending an email to the Ocu-Mel listserv asking for their thoughts and quickly got a bunch of responses, the average of which was, “You’re smart for seeking a second opinion from Sato, but you’re dumb for keeping this from your wife.” I ended up going right upstairs and telling Angel what was going on, and that there was really no reason to worry at this point. Note to self: no more medical secrets from Angel.
Dr. Sato’s team came back with pretty much the same assessment…the unknown spots are most likely hemangiomas, although based on the slightly strange enhancement characteristics, they are not 100% sure. His team suggested a follow up MRI in 2-3 months using a more standard contrast agent, Magnevist or Multihance. Apparently he prefers to see an MRI with Eovist when assessing liver metastases, and with Magnevist when assessing hemangiomas. I’m going to push for something closer to the 2 month end of that spectrum, which would put me at getting another MRI in about 4 weeks from now.
Interestingly, the measurements from Dr. Sato’s team made each spot much larger than what the original radiologist said it was. The 10 mm spot on the original report became 18 x 15 mm. The 18 mm spot became 10 x 27 mm. One of the 4 and 5 mm spots became a 7 x 14 mm spot. Anyway, I thought it was interesting to see how much variability there was in those measurements.
Okay, this post is getting to be too long, so let me tell the funny story real quick. So at my last appointment with Dr. DeSouza, Angel and I walked into the exam room with Dr. Patel (the intern/fellow that I mentioned earlier). Dr. DeSouza stuck his head in the door real quick and said, “So, uh, big trouble in little eyeball huh?” and then smiled and walked away. If you’ll remember back to my second post, the main thing that I had mentioned about Dr. DeSouza was that Angel and I thought he did a pretty terrible job of giving us the bad news. Apparently he had recently started seeing another patient with the same cancer that I’ve got. That guy did some research about choroidal melanoma online and somehow came across my blog. His next appointment went something like this:
Patient: “So I did some research about this cancer and came across a blog that mentioned you.”
Dr. D: “Oh yeah?”
Patient: “Yeah, you should check it out, here’s the address.”
So, that appointment was a little awkward for Angel and I. I reiterated to Dr. D that I’m sure it’s difficult to tell someone they have cancer, especially when you work in a field that doesn’t get a lot of cancer. He ended up saying that he enjoyed reading about my story from a patient’s perspective. All-in-all everything was normal by the time the appointment ended.
It turns out that other patient, Larry, emailed me and we’ve been exchanging messages for a little over a week now. Angel and I are going to meet up with him and his wife for dinner sometime next week.
And that’s all I know for now. I should have more to update in about a month.
On a side note, my brother’s friends Kelli and Bob got some bad news last month when their very cute, very strong 2 ½ year old son Brody was diagnosed with acute myeloid leukemia, a particularly nasty form of leukemia. If you could send as much positive energy as you can muster over their way, I would appreciate it, and I know that Brody and his parents would appreciate it as well. Thanks to some of their excellent friends, a number of fundraising efforts are underway to help the family with medical bills. You can read more about their story and see if there’s something you can do to help by checking out www.brodyblagen.com.
Saturday, January 15, 2011
The picture that I got this time was taken from a slightly different angle than last time, so it’s hard to tell anything by looking at the picture. It’s still cool to look at though, so here’s a comparison between the old and the new pictures.
That’s pretty much it for medical updates. We met some cool people in the waiting room at Dr. Char’s office and had some good conversation while my eyes were too dilated to focus on them. They actually come down to Mesa every year to watch some baseball. If you guys read this, send me an email when you are heading down…maybe we can get together for a beer or something.
Getting good news from the doc made the rest of the weekend much easier to enjoy. Thanks to Andy and Ellie for helping us out with an awesome place to stay. We got together with our friend Jessica for dinner at a sushi boat place (a bunch of sushi dishes float past you down a little moat-like thing and you grab what you want as it floats by. Angel and I got to visit Alcatraz, which is always a cool thing to see. We also had a great time with our friends Ben and Katherine, making a round trip across the Golden Gate bridge ON FOOT. According to Wikipedia, that’s a 3.4 mile walk. Then we had an incredible dinner at an Italian restaurant called Il Pollaio…the best rib eye steak I’ve ever had, along with some grilled chicken and grilled rabbit. I highly recommend that place.
That’s pretty much it for this update. I’ll see the retinal specialist in Mesa next month, then I’m due for some blood work, and possibly a scan of some sort in a few months. See y’all around!
Monday, November 15, 2010
Friday, October 15, 2010
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.