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.
