My Ocular Melanoma: Rob’s Story

Wow, it’s been over a month since I’ve posted anything. Not that I really have anything good to say.

About a week after returning from my first 3 month checkup after the proton radiation treatment I started to feel the effects.

Nausea, headaches, extreme tiredness, lack of concentration, stiff/sore legs and feet.

Mystery illnesses or an aftereffect of the radiation? I don’t know and no one I talk to will commit 100% to that being the cause.

But forward I go. Life does go on whether you want to participate or not. I make the most of the trouble free minutes in each day that I can and remember to take my pain pills and sleeping pills to get me through one day and onto the next.

Wish me well.

Today Sheila and I have arrived back from my first 3 month checkup after undergoing the proton radiation treatment.

 Dr. Paton assures me that I am doing fine. There has been no noticeable change in the size of the tumor, which is a good thing. At the 3 month mark it cannot be seen if the tumor is getting smaller, this may happen at the 6- or 9-month follow-up. The good news is that there is no sign that the tumor is larger, which means that the radiation just might have worked.

I am still feeling tired, sometimes with nausea to go with it. My regular doctor assures me this is normal for this to happen, an effect of the radiation.

I will be going again in April for my 6 month follow-up. And looking forward to some positive news as well as better weather.

This is how my eye looks 4 weeks after the proton radiation therapy.

The lower eyelid is very sore. I am using a cream to ease the pain and discomfort of the “sunburn effect” from the ratiation. This is an after effect that I was warned would happen. It feels just like a severe sunburn. The skin has already stared blistering, which makes it hard to concentrate, sleep, many things of a normal life you’d do but can’t if you’re badly sunburned. But it’ll get better.

It’s 3 weeks and a couple of days since my last proton radiation treatment.

At first, except for the tiredness, I felt great. It was good to be back home, start the regular routine again.

Now, the “sunburn effect” has started on my left lower eyelid. Have you ever had a sunburn so bad that your skin felt so dry as to seem like it was cracking open? This is what I now feel.

It started 2 weeks to the day of the last radiation treatment. The “sunburn effect” grew quickly. Not so bothersome at first but after a few days, then a week… WOW. The pain from how the eyelid skin feels it won’t let me sleep.

I take an Avdil every few hours to help to keep the swelling down. I ice my eye when the pain gets real bad. And I have a moisturizing cream that the pharmacist suggested, it’s fragrance free, non-oily too, which makes a big difference in how the eyelid reacts to the moisturizer. I was using a scented cream but it really stung. As well, I still have eyedrops to take 3 times a day to help the eye heal. Scented cream at the rim of the eyelid, mixed with eye drops, is a type of sting that no one should have to endure.

If I could only sleep at night… ahh….

You can see how the areas of my visible right eye (during treatment, because of the loss of central vision in my left eye, the ‘tracking monitor’ was watching my right eye instead of my left eye that has the tumor) are marked on the monitor.

Should I lose the flashing light that I must train my eye at to be certain the proton beam is directed correctly, the doctors will immediately put a stop to the beam so as to not cause additional damage to my eye. It’s only the tumor we want, not the whole eye.

A patient not being able to maintain his aimed eye line during the treatment increases his chances of losing the eye. Fully 1/3 of proton radiation treatment patients have to have the treated eye removed. This is usually due to the tumor killing the eye before the radiation kills the tumor, I believe. Hey, staring at a flashing light at the edge of your vision for 90 seconds seems easy at first…. but it isn’t.

The proton radiation treatments are monitored from a short distance. No one wants to be in the same room as the patient (for safety and health reasons) during the actual radiation treatment.

The patient (me) is watched for panic in the left monitor (as well I have a panic button in my hand once I am positioned into place and the mask is set) and in the right monitor my right pupil is seen enlarged. Should my vision move outside of the allowed areas, as seen from the marks on the pupil monitor, the treatment will be immediately stopped so as not to send the proton beams to an area that is not the tumor.

Rob getting setup as seen in one of the monitors that are used to watch the proton radiation procedure by the doctors, assistants, physicists and visitors to the TRIUMF center.

It’s much harder than it looks…. Christine (from the BC Cancer Agency) Has to make sure that I’m correctly positioned while in the chair. Measurements are to the 1/1000 of a milimeter, that’s how exact the proton radiation is directed at the tumor behind my left eye.

Once the mask is made they have to put it to use. They use it by fitting it on your face having you clamp down on a molded bite plate and there you are, anchored in place. The chair is a technological marvel, as detailed elsewhere.

My name is Robert Lee, and I have Ocular Melanoma.

I am not a specialist, just a survivor of this very rare cancer. On this day I have completed the last of four proton radiation treatments at the TRIUMF Research Facility in Vancouver, BC, Canada.

During my first follow-up appointment (today) with my ocular oncology ophthalmologist Dr. Paton, she suggested a website that will allow other Ocular Melanoma patients to find information concerning this specific type of cancer and this is what I am attempting to do here. Dr. Paton will be providing me with information concerning diagnosis, treatment and other relevant information to help other Canadian patients dealing with this disease, themselves and their families, to better understand OM throughout the coming months (years), to help to find the information they need that is relevant to Canadian patients, their families and concerned individuals.

Please note that the information available here is NOT a substitute for professional advice and should be used for reference only. Please see your specialist!

Personal experience:
My first change in vision was March 28 2003. Like a light switch being turned on the vision in my left eye became blurry. As soon as possible I went to see my regular eye doctor. At the time I already wore glasses for poor vision in my left eye. A couple years earlier I was told by my optometrist that I have a differently shaped left eye that was causing me to have trouble seeing and was causing my headaches, the complaint at the time. He prescribed eye glasses which improved my vision and ended the headaches.
At this time he saw something behind my see and immediately referred me to an ophthalmologist to further investigate this change.

In the course of treatment I have had PDT treatments (Visudyne) and Avastin treatments (both described elsewhere in this website). The final treatment at the time of this writing was Proton Radiation treatments.

I was initially diagnosed with having a type of Age-related Macular Degeneration (AMD). Surprising since I was just over 40 but who am I to say?

Regular specialist follow-ups determined that the profile of the growth was actually a tumor, a much rarer form of cancer, Ocular Melanoma.

The treatments I have had are documented elsewhere in this website.

Things to look for:
Any change in your vision should be investigated by the proper specialist.

If no immediate determination can be made as to what is happening to your eye/vision be sure to have regular follow-up appointments scheduled. The eye is still very much a mystery and OM is not something that biopsies are performed for. You should have eye tests, images and pictures taken regularly, every 3 months, six months or annually as your specialist deems necessary. Ultrasounds. Maybe even Angiograms to help your ophthalmologist determine the right course of diagnosis and treatment. The rareness of this type of cancer (7.5 people out of one million is the common estimate for how many people will be diagnosed with this type of cancer annually), leads it to not be readily identified. In Canada more people will win second prize in major lotteries than be diagnosed with OM annually.

Often there is no outward sign of this type of tumor other than the patient experiencing a sudden change in vision. Or any type of eye tumor, for that matter.
Again: If your vision suddenly changes get your eyes looked at by a specialist.