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I am a 33 year old female diagnosed with VHL in 1998. I have been treated for retinal angiomas since 1998. I have had cryotherapy, retinal detachment and ongoing laser surgeries. I would like to find out information about the drugs Avastin and Lucentis as they have been offered to me as experiential treatments. Has anyone tried these drugs with injections to the eye? I would greatly appreciate any information that anyone can share.
Hello, your story is VERY similar to mine. I am a 27 year old male. Also had retinal detachment because of an angioma in the right eye back in 99. I had multiple cryos and have laser treatments regularly. I did have both avastin and lucentis injections. If I recall correctly about half a dozen of each. They didn't do anything for my eyes, but I did pass out after one and hit my face on the thing they pull in front of you and chip a tooth. The tumor in my right eye is LARGE, but even the smaller ones in both eyes were unaffected. I don't know what others have experienced, but obviously mine wasnt positive. I hope things turn out way better for you. And if the injections don't help, at the very least, I hope you dont lose any teeth!
I have been treated for retinal angiomas since 2003. After cryotherapy and several laser surgeries, I had so much scar tissue I developed a tractional retina detachment. The scar tissue was severely pulling on my retina. I have had two vitrectomies and membrane peel; my eye is getting fragile so the specialist decided to try Avastin injections. A word of caution - many insurance companies have quit paying for the injections (they are considered experimental); I don't know yet if my insurance company will pay for my latest injection. As for the injections themselves - they are not as bad as they sound. They will numb your eye somewhat and it is over before you know it.
Thank you for sharing your stories. My doctor is hoping the injections will prevent new angiomas. Were the injections successful for you? I was also told they would only last about two months. In addition I am concerned about the risks infection, stroke, heart attack...
I had Lucentis injections for a year and then had 3 avastin injections after the Lucentis injections. During that time I had a large tumor on the optic nerve which it didn't seem to help. But, I had a very small tumor which it seemed to stop. I also did not develop any new eye tumors during that time (but, there is no way to know if I would have developed any otherwise).
I now have 2 new hemangioma's in the affected eye, but have not had lucentis or avastin injections for 3 1/2 years. It's hard to say if it would temporarilly prevent tumors since there is no way of knowing when a tumor may occur.
I really didn't have any side effects from the eye injections, and was given antibiotic eye drops to use for a week after each injection to prevent infection.
My son has had a similiar situation. Diagnosed when he was 12 now 20 .,. Right eye blind because of lasars cryos and virtrectomy. While he was going through the process of spine tyreatement , his eye was getting worse and he klost his vision while concretatimng on the spine . Anyway he had had avastin and it did nit help him. His left eye last year developed tumors and treatment easd lasar, Afterv that lasar things got worse and he almost lost his vision in his good eye, He was lucky and had a virtrectomy in that left eye and now he is vision impaired, Consult with Dr Chew at the NIH before you consider any treatment because they are ther experts and compassionate and helpful like a guardiasn angel
I have never heard a time frame for effectiveness. Three years ago I was given one injection in each eye (at different times). The right eye has not yet required another injection, but the left eye has (just last month). I am being told now that "they" feel a series of injections are a better course of treatment. No more tumors yet, but as the others have said, who can say for sure why. As far as I can tell, the best recommendation for the injections is that they don't create the scar tissue that other treatments do.
I too was in the Lucentis trial with Donna B. (Hi Donna!) I had a tumor on the optic nerve. I had 14 Lucentis injections and 1 Avastin. Didn't experience any side effects. Treatment was not successful for me. That doesn't mean it won't work for you. Good luck!! We are all here for you.
Marie
Thanks again for sharing. I am going to the NIH 9/30 to see Dr. Chew for a second opinion.
I am so glad you are going to see Dr. Chew, she is the best person you could see for this. She is wonderful. Let us know what she says.
(Hi and Hugs Marie!)
Dr Chew is wonderful an angel as well as Dr Willey
Another doctor you might see for a second opinion is Dr Richard Gorin at UCLA Jules Stein Eye Institute. Some of you may remember him as a speaker at the VHL FA annual meeting in Anaheim.
I've been doing this since 1987. He is simply the vest VHL retina specialist I've ever seen. (performed laser twice)
He will be able to tell you what all the research says about the use of Avastin (and cryo for that matter... which I think I remember from the annual meeting has been determined to be ineffective treatment for large tumors, but don't quote me).
Has anyone gone to one of the Retinal Specialists at UCSF? I have been going there more often for treatment lately and I would like to get my eyes taken care of there too. The place I go to now is in the town I live in so I pretty much go to them just because of proximity. Not that they are bad Dr's by any means, I would just like to see what's out there.
Hi there. Can I have the contact number for Dr. Richard Gorin at UCLA? Thanks! Marie
Oops, it's Michael Gorin. Here is his link...
http://www.uclahealth.org/body.cfm?id=458&action=detail&ref=7202
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