hi ive read some stuff on eye tumors by the opic nerve, now ive had one there for 6 yrs and its been ok untill now , just been told its got slightly bigger , ive always been told that i should never have lazer on it as i would go blind, now for all these yrs i havnt really worried cause its been good, but to my supize it grows , ive been offered this treatment , of freezing it , they give an injection in my arm and then put a light near my eye , its meant to be a long treatment thing , so confused or what , i really am not sure on this , i didnt evem go in to see about that eye as well i went about other eye , as i had that lazered yrs ago but now im seein the same black things again , and i was told the jelly part is commin away cause of age , ( i was shocked im only 38 i thought to my self ) now it was the same black things ie seen befor when theres been a bleed, should i get a second opoin, on this lot , i am so not sure to let this doctor near my eyes , i not sayin she not good im just so not sure and never heard of this treatment , and my sight is gettin worse sometimes blurd and now im gettin sent for an eye test how mad , i told her tht the big black dot isnt goin to go away , and my eye test a hos is worse what is classes goin to do make it better,, dont think so ,,, if anyone has any good info on this would be good , because im puttin my sight into a doctors hands that im not sure about ,
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eye tumors
- By batley
- Posted September 28, 2008 at 7:39 pm · 16 replies
- In Health management issues
- Shared with the public
Explore topics in this discussion:
Retinal detachment Surgery Avastin Enucleation Pain Cataract Sunitinib Sutent Stress
16 replies
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- By Louise4
- Posted September 29, 2008 at 11:28 am
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Hi Batley
I had a big eye tumor 2 years ago and they sent me to see a Doctor in Owatta to get it lazered and so far so good.I get my eyes check every year and there nothing there no more i am so happy.They say that it was the big eye tumor that they has seen.So maye be you should go see some one else for your eyes.Get a second eye check to do some thing about it befor it's to late my brother lost one eye to tumors.So do go get it look at again if you dont fell safe with that Dotcr you have.
take good care and good luck
- By joyceg98
- Posted September 29, 2008 at 3:34 pm
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Read the two articles about treating eye lesions on the optic nerve which are in the current newsletter.
http://vhl.org/newsletter/vhl2008/08ca_chew.php
I see that Dr. Singh's article, which is in the print edition, somehow didn't get into the web version. It is in the pdf, so you might want to check page 3 of the pdf version:
http://vhl.org/newspdf/vhln0809.pdf
As you will see, there is no perfect solution to this problem.
Freezing is "cryotherapy", which is generally not recommended for optic nerve tumors.
Photo-dynamic therapy is the one that Dr. Singh recommends, and for that you would get an injection followed by light treatments to the retina. The injection gives you the "tracer", a chemical that seeks out the tumor cells that we want to treat. The light activates the tracer, killing the cells where the chemical and the light come together.
I was a bit unclear from your description, but hopefully you are scheduled for photo-dynamic therapy (PDT). I hope it goes well. It won't be a quick answer (it takes up to 2 months for the results to be clear). We'll be cheering for you!
Best wishes,
Joyce
- By donnab
- Posted September 29, 2008 at 4:49 pm
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This is my own personal opinion:
If I were in your position, I would look for a second opinion. The reason is because it's an optic nerve tumor. These tumors are extremely rare and hard to treat. I have an optic nerve tumor that we've tried several things on so far, but I have yet to do anything like cryotherapy, lazer or PTD that may cause permanent damage to my optic nerve.
I guess I would weigh how much time I had to look at alternatives, is the retina detached now or is that an ongoing issue? (I've been told several times for the last year or so that I have retinal detachment from the fluid/lipid but I don't have a completely detached retina). If they don't do this now, will I lose my eye?
I'm also not sure I would put my eye in the hands of someone I didn't trust 100%.
There is a new study open at NIH with Dr. Catherine Meyerle. It is for a drug named Sunitinib Malate(Sutent). No idea if it will work. There will also be a study coming up in 6 mo-1 year for a radation treatment to put the radation right at the tumor with a quick drop off rate on the radiation seed they put in there, they are hoping that may be a good option to treat the tumor without damaging the optic nerve.
- By batley
- Posted September 29, 2008 at 5:25 pm
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thanku everyone who replyed to me , i have deceied im not havin the treatment , not because my doctor may not be good enough i mean she may well be very good and really has to be in her job but for the fact she said it to me very lightly, and made comment on my age ok i may look older but stress of vhl does that to u and my family have been threw alot with it so yeh i look a bit done in ha ha , also im very supized as well theres no new bleed in the eye i went for yet im told the jelly or somethink is commin away with age i found that a very strange comment to make , yet the black things are the same as i had befor in that eye , and vison is poorer than befor , so ive had long thoughts on this tumor on or next to optic nerve and i dont want to risk what sight i have , ive had lots of computer photos took with this eye with the dye put in , i wish we had the trails of that new treatment here as i would go for that , but good luck to all that is goin for that , thanks everyone lesley
- By donnab
- Posted September 30, 2008 at 1:02 pm
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Do you have the option in the UK to see another Retinal Specialist for a second opinion?
If something is going on with the eye, doing nothing may not be the best option either.
Leslie- I figured out who you are. How are you doing? I spoke with you a few times while on your family forum that your brother put up a couple years ago.
- By batley
- Posted September 30, 2008 at 4:08 pm
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hi there , i didnt notice as well , ha ha , i dont have anythink to do with my brothers site anymore, we had big fall out about a yr ago , so i dont see family here now , i deal with vhl myself , and just suport me and my kids , im ok just things startin up again and my other brother so hard times at moment , how are you doin ,
- By pupa
- Posted March 21, 2009 at 2:04 pm
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Hi Iam in the middle of making a decision if I shoul try sutent The drs want me to wait for the results of the lasar before I consider that type of strong treatment because they have know prive that sutent weould help in thr eye What do you say please suggest thanks Iam only 20 and my vision in my right eye is gone and my left eye the situation is not the best
pupa
- By joyceg98
- Posted March 24, 2009 at 12:35 am
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There is another thread here about Sutent. We do not yet have clear evidence of its usefulness in the eye. It sounds like we should talk on the phone, Pupa. Please call me at 800-767-4845 and we can talk about what is available near you. The two articles I mentioned from the September newsletter contain the most current information, and we can connect you with one or more experts if you would like another opinion on your particular case.
Best wishes,
Joyce
- By pupa
- Posted April 5, 2009 at 7:31 am
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My situation is getting worse, now I am scheduled for a cataract surgery tomorrrow two weeks later avastin in the eye and than 5 days later a VITRECTOMY. Wish me good luck , Thank you
- By TinaDiane
- Posted April 5, 2009 at 11:30 am
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We will all be thinking of you and praying for you this week, Pupa!!! Keep your chin up and go with a positive attitude.... You can do it! I am proud of you for taking action.
Best of Health to us all,
Tina
- By pupa
- Posted April 6, 2009 at 8:37 am
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Dear TinaDiane
Thanks for the e3ncouragement I wish only good to all .
Pupa
- By marie3
- Posted April 7, 2009 at 5:12 pm
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Hello to all. I just thouht I'd let the group know I'm going in for my pre-surgical appointment next week for enucleation surgery. I'm unsure how to feel right now.
Talk to you soon,
Marie3
- By TinaDiane
- Posted April 8, 2009 at 9:30 am
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Our prayers will be with you. I always feel somewhat removed from reality before surgery, the feelings seem to catch up with me later, then I cry like a baby!
Hang in there, my best advice from my Dad has always been "Keep your chin up." I'm sure you are feeling very overwhelmed, and taking big deep breaths always helps me....
Best of health to us all
Tina
- By marie3
- Posted April 9, 2009 at 9:28 am
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Thanks Tina for your comforting words.
I have good days where my eye feels fine, and I think "Maybe I'll wait." Then I have days where the eye is irritated and tearing all day long, and it brings me back to reality. I know what I have to do.
Then I think that I should not have had radiation. Radiation completely destroyed my eye. Now Photo Dynamic Therapy is working well. Six or seven years ago that wasn't even an option because PDT wasn't successful in treating tumors, I was told back then. You all know the saying, "Would've, should've, could've."
I'm just venting. I feel like maybe I didn't make the right choices. My Ophthamologist tells me,"You were seen by the best people in the world (Northwestern Memorial Hospital, NIH, Mass. General)". I know my doctors are very good-they're friends with Dr. Chew.
Sorry! Once again, I'm just venting.
Thanks!
Marie3
- By joyceg98
- Posted April 9, 2009 at 1:22 pm
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Feel free to vent. We all need to do that sometimes.
My son and I were talking the other day too about the times about which we can only say, "it seemed like a good idea at the time..."
Like you, we asked the best people we could find at the time, and thought we had the best possible plan. And we did. It's just that there was so much none of us knew at that time. Since then, we have learned a great deal, the technology has improved, and the doctors are learning. Using new methods, they are getting better results with PDT than they did before.
I keep telling myself, we can't go back. We can only go forward. We can wish it would have been otherwise, but we can't change it now. All we can do is learn and move forward, and be glad that we are making the course easier for the next person down the pike.
Once the retina is no longer feeding the eye, it deteriorates. Whether or not you had had the radiation it would likely have gone the same course. At this point it's time to get the pain and tearing taken care of. I will look forward to seeing you the next time with two beautiful, pain-free eyes!
Love,
Joyce
- By donnab
- Posted April 9, 2009 at 11:46 pm
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Marie,
I think you are doing the right thing, your decision is what's best for you.
We can't play the what if game, who knows what would have happened if you'd done nothing and instead decided to wait for something better to come along. Heck, we're always waiting for something better to come along.
I think doing something rather than sitting back and waiting is usually the best course anyways.
You're in my prayers and I can't wait to see you again one of these days.
Hugs,
Donna
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