Wednesday, February 9, 2011

has it traveled to the eye(s)





Really wish I had a happy blog written up about my trip to Hawaii last week but while there I noticed in the corner of my vision a sort of halo. Like one you see after someone shines a bright light at you and you can still see it after you blink. I tried to ignore it, I was on vacation and all, but it did not go away. I was just in my left eye and off to the side.

3 possibilities I could think of, and each did not warrant panicking over (at least while on vacation) :

  • laser exposure- yah so I own a laser that is way to powerful. Maybe while playing with it I exposed my eye to it indirectly. In that case, not much I can do, might as well count it as a really stupid purchase
  • tumors traveled to the brain- no headaches, and it was only in 1 eye, I don't know how the brain separates left from right in the visual cortex but still I would not be surprised if the tumors have moved to the brain. To be completely honest, out of any of my organs to be my ultimate demise I would think the brain would be preferable...
  • tumors on the ocular nerve- did not expect RCC to go for the eyes...hell did not know cancer could do stuff like that.
The next day after we landed home from Hawaii I emailed Dr Amy Lin. In 10 minutes my phone rang with nurse Corry saying to immediately go to the ER... after a few minutes I pulled myself together and packed a bag for what I knew was going to be a long day.

8 hours later (most of that wasted in our mess of a medical system called the emergency room) I was seen by a optometrist and went through over an hour of tests. The most startling one was him simply showing me this picture


I was surprised by just how big my 'hole' in the vision was. It is sort of hard to explain but in essence everything in the top left quadrant looked like this



The doctor informed me that he could see what apears to be tumors in both of the eyes... but more tests need to be done to confirm and the machines to do the tests are 'locked up' for the weekend' and the next time I can be seen is in the clinic in 7 days. "but don't worry I don't think it will get any worse in that time"

Doctor's really piss me off sometimes. Tell me my cancer has moved from my kidney all the way into my eyes. Now push off a 10 minute test to give conclusive results for 7 days and follow up by saying "but these tumors don't explain why you have a hole in your vision" .... gag

The spot in my vision slowly shifted over the last week into my direct line of sight of the left eye. My left eye is my stronger eye too.

Doing some research now found this http://en.wikipedia.org/wiki/Macular_degeneration seems very similar to what I'm experiencing, and from what I understand it could be related to Sutent blocking blood vessel signaling pathways for regeneration. But it's not listed as a side effect... Want to place a bet this is it?

So I sit here now, left eye can't see the screen for shit. Doing research on my eyes and on clinical trials for all sorts of new drugs. Weighing the risks of clinical trials, quality of life, chances any of these are going to prove to be a miracle for me. Or should I just stay with the Sutent?

3 comments:

  1. :-( wish this stupid disease stop making more damage. I wish there was something I could do to help.:-(

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  2. i concur - the scary part is the Sutent is keeping most things stable. If loosing sight is a side effect then how do you measure quality of life vs quantity?

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  3. Sorry to hear what's been going on with you. Just know that it will get better. My thoughts are with you. My grandfather had a very rare type of bone cancer, and lived passed the time that they said he would. And I have a co-worker that survived brain cancer at the age of 13, I believe that he probably went through some of the same symptoms that you are with the eyes. And today, he's doing better and said he would never change it. Just try to keep your spirits up. And enjoy life!

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