Ciliochoroidal melanoma

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9/28/2012 12:18pm
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Replies: 10

I think I may have finally found where I "need to be" ! I posted earlier today on the otherforum and was directed here :)

I am hoping to find someone who has had radiation plaque therapy...will my vision ever come back in the treated eye? My radiation was a little over a month ago and when I had my check up yesterday, I already have a cataract forming. My vision (if you want to call it that) is 20/400?..legally blind in that eye...

While I am thrilled that the tumor is shrinking, I am worried about being able to return to work...I drive school bus, so obviously, without my vision my only source of income is in jeopardy! The Dr. says it could be 3-6 months before the cataract can be removed and after that he can't predict anything.

I really need to hear from someone who has been thru this (I have not been able to find any local help) and just found this site this morning :)

Kim

I had a plaque done in Feb, 2009, and my vision is still pretty steady at about 20/150 or so.  I also have the beginnings of a cataract, which was expected as a result of the radiation.  I've heard results are highly individualized, based on tumor size and location, so everyone is different.

I do have a big blind spot now on my side, so it's a lot easier to sneak up on me.  On the flip side, it's also easier to ignore people that way too.  Driving isn't a probelm, but I did add some supplementary convex mirrors to help on the right, since I don't get a full view from a quick head turn while changing lanes and such.

It's the little things.

--Tom

Keep Rowing!

Kimmie Kay - (9/28/2012 - 11:27pm)

Thanks Tom,

Was your vision like a dense fog in the month after surgery? And can glasses help you see better now?

My tumor was large and located in the bottom/front of my eye, so my total darkness is the entire top of my right eye. Did you have the "blind Spot" before the plaque?

I thank you for your willingness to share information...sorry Ihave so many questions...I am just so frustrated right now..

Kim

Kimmie Kay - (9/28/2012 - 11:28pm)

Thanks Tom,

Was your vision like a dense fog in the month after surgery? And can glasses help you see better now?

My tumor was large and located in the bottom/front of my eye, so my total darkness is the entire top of my right eye. Did you have the "blind Spot" before the plaque?

I thank you for your willingness to share information...sorry Ihave so many questions...I am just so frustrated right now..

Kim

Fog sounds about right.  Fog and dimming across the top right.  Mine is also the right eye, although my tumor was posterior nasal side.  I did not have the blind spot before the placque -- that's a result of the radiation screwing with my optic nerve.   When I get new lense prescriptions now, I only pay for the left lens, since there's really no corrective help for the treated eye.   Light levels make a difference, too.  My right side vision washes out in bright sun, and darkens if the light is too dim.  Night driving is still fine, although I'm always more aware of who's around me, especially in the lane to my right.

I can't remember which Dr. said it, but the priorities with OM are:

Save your life.

Save your eye.

Save your sight.

In that order.  Now that I've progressed to Stage IV, I can't say my blind spot is a big deal.  I don't think I'd try for a new career as a stunt pilot, mind you...

 

--Tom

Keep Rowing!

Kimmie Kay - (9/30/2012 - 9:40am)

Tom,

I'm confused, what do you mean by Stage IV?  Has yours spread somewhere else? My Dr hasn't mentioned Stages.

Kim

Yes, two years post-plaque, mine spread to my liver, which I had treated a year ago.  There are also some supicious lung spots that I'm not terribly worried about yet, and one new spot in my back muscles that we're hoping to biopsy and get some genetic testing done (something I didn't know to ask for on the original liver biopsy, and that we tried, but missed during the last surgical treatment).

To tell you the truth, I've never heard of Stage II or III OM.  I'm not sure our little bug has anything other than Stages I and IV.  I could be wrong.

Either way, be sure to find a doc that will get you MRI's and CTs every 6 months.  That was the way we caught my metastases early.  My first doc wanted to only scan yearly, so I fired him.

 

-Tom

Keep Rowing!

Kimmie Kay - (9/30/2012 - 8:49pm)

Tom,

More questions...hope you don't mind...I had a PET/CT scan done in Aug. before my plaque procedure. They said it was clear. Is there still a chance it will show up later? They did send my biopsy that was taken when the plaque was put in place to AZ for more testing...what would they look for in genetic testing?(or what questions should I be asking about the results?)

Kim

Mind?  Shoot, talking about it is free therapy.  The more the better...

Yes, cancer can metastasize years later.  I think Esther might just hold the living record -- something like 20 years!

The genetic testing that is usually specific to OM includes looking for GNAQ and GNA11 mutations.  B-RAF is sometimes cited as another mutation, although according to Dr. Sato, that one is mosly for cutaneous (skin) melanoma.

Knowing the genetic makeup of your tumor can be vital info for you to have should the time come to enter clinical trials, many of witch require confirmation of one or the other mutation.   Keep the test resutls in your safe deposit box and I hope you never, ever have to use it!

 

--Tom

Keep Rowing!

Dennis - (10/3/2012 - 2:29am)

Hi Kim,

First, to answer your question about it showing up later..unfortunately the answer is yes. OM is one cancer that is considered uncurable and has shown up up to 20 years later. The genetic testing in Arizona is most likely at Castle Biosciences. Based on your test result you can be in one of three groups..1a, 1b or 2. 1a and 1b have a fairly low risk of metastasis, class 2 a very high risk. Keep in mind the test has only been out about a year but it has been in research for about 7 years I believe. The test was primarily developed by Dr. William Harbour at St. Louis.

You should think about if you really want to know the results of the test before asking your doctor for them. The reason I say this is that if I remember correctly Class 2 people are considered to have about a 95% chance of dying from OM spreading (usually to their liver), and about 55% are dead within 5 years according to their data. Since the doctors say there is no "cure" once OM has spread the only thing that can be done are treatments that can keep you alive for awhile. I am Class 2 and basically it was very tough news to hear but the science is new and only time will tell how accurate it really is. Also, even for Class 2's 45-50% are alive after 5 years and we don't know how long those people live as there is not enough data. There are other factors that are supposed to affect your risk profile such as age, sex, cell type etc.

The other side of the coin is that is you are Class1 you basically really dont have to worry about your mortality from OM. So anyway, depending on your personality you may or may not want to know the results because if you are Class 2 your next question would be..ok what can we do to stop this from happening? The doctors will tell you nothing..:(

Having said that, there is more and more evidence for supplements and other alternative approaches working for people. In addition there are new developments like PHP, IHP, Immuno Embolizations etc. that are keeping stage IV OM patients alive longer and longer. The key is to catch it EARLY if it does spread as OM is fairly aggresive when it spreads. I get an MRI of my liver every 3 months, CAT scan once a year and xray of lungs once a year.

I know your head is probably spinning from all that you are going thru right now, but there is a community of us here to offer help and support.

I'm keeping my fingers crossed that you are a Class 1!

-Dennis

OK, now that we've thrown numbers out to scare the bejezzus out of you, go read this...NOW, particularly the brilliant essay titled "The Median Isn't The Message."

 

http://tinyurl.com/readingstatistics

Keep Rowing!