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I'll be at NIH Sept 21-24. I am doing scans, bloodwork and eye clinic all day on the 22nd. I have pretty much the whole day of the 23rd open and will be at OP 3 clinic on the 24th. I thought that if anyone else is going to be there at the same time maybe we could meet up.
Donna,
What do you do at the eye clinic since there isn't a study going on? Are they still following up on your eye tumor?
Just curious.
Marie
I am actually going to urology each year on an annual basis. I do see Dr. Chew when I'm there, she fits me in between my scans and stuff.
Dr. Chew is still following some of us and our treatments. So, she gets to see me and see how the eye is doing after radiation treatment. She also does a full retinal exam on both eyes which works out for me since I have been put on once a year exams with my local doctor, this works out so I'm actually seen every 6 months instead which gives me a little peace of mind that my good eye is being monitored more often.
I am starting the Sutent Study for my eye tumor.
I will be at NIH Flying in Dec 7th and Departing on Dec 12th. If anyone else will be at NIH during that time and would like to meet up let me know.
I'm just giving this thread another poke since I'll be at NIH next week. If anyone else is going to be there and would like to meet up let me know.
I'm flying in on Dec 7th and Fly out on Dec 12th. I don't have my schedule yet, although I should have it this week before I fly out, so I don't know what days I'll have free time yet.
Donna,
Wishing you all the best with the Sutent study! Wish I was meeting you in Maryland. I didn't qualify. I'm trying this all natural drug (from a doctor that practices Chinese medicine) which is supposed to bring my eye pressure down and give me some vision back. Yeah, right. But we shall see.
Lots of luck! Keep me posted.
Marie
Marie,
In 1996 or 1997, they wanted to remove my painful eye. I made a tincture for myself with many herbs in it, enough of the tincture to last me a year. After being on the tincture for 8 months, my eye got quiet. The doctor didn't know why the eye became quiet and till this day, I still have my own eye.
Wishing you much success.
Gale
Congrats on getting to the NIH -- hope they have some answers for you!
Thank you everyone.
Marie! *hugs* I wish you were coming too. I hope the natural medicine works and gets the pressure down in your eye for you. Keep us all informed on how that works. Take care of yourself and give your mom a hug from me too.
Donna- Hugs right back to you! Thanks! Have a safe flight. Marie
Gale- Are you currently taking any drugs to treat your eye-whether it be all natural herbs or ocular prescriptive medicine? I am taking pred forte and atropine twice a day each, in eye drop form. My glaucoma specialist tells me that I am to take these drugs for life. The alternative is ennucleation, as you already know. My all natural doc says that he can wean me off the eye drops, once his all natural pills begin to work. The natural drugs will actually treat the problem rather than treat the pain. The goal is to bring the pressure down permanently. Once the pressure comes down, I can discontinue the all natural drugs.
Sorry to babble. My main question is..........did your eye remain quiet without drugs?
Thanks,
Marie
Marie,
My eye did remain relatively quiet. I did take Voltaren drops as needed when my eye started to bother me. One bottle of drops lasted a year or more. I use some drops now more to keep the eye moist.
I did get a script for Xibrom, which is more when I get a lens; although I have used it when I feel the eye kind of different than the other eye. I guess I would describe it like cold in the eye. I actually put the ordering of the lens on hold.
Other than that, I have never been on prescription meds for the eye. More so, I guess, because I don't think anything was ever prescribed.
Gale
Marie3,
I am sure we would all be interested to know whether your natural doctor's method works. Predforte and atropine do work, but if there were a natural alternative that works, that would be even better. Please keep us posted.
Best wishes,
Joyce
Marie- When did you start the natural drugs prescribed by your naturalpath doctor? How long does he expect it to take to start working?
I started the drugs at the end of October. I wasn't given a specific time-line to take the drugs. I'm due back to the natural doc in January. I'm going to my Retinal Specialist in a couple of weeks. We'll see what he finds. If the pressure is decreasing, we will cut back on the predforte and atropine to once a day each. The part that makes me nervous is going off the predforte and atropine COMPLETELY------which is the plan eventually.
Gale, what is Voltaren and Xibrom for? And why a new lense? Your docs didn't prescribe anything when your eye was painful???? My eye has been constantly dialated for almost a year now, and it looks a little different lately; like the color of the iris is off.
My concern is being on predforte and atropine for life. Systemically, there has to be side effects. Anyone know? I got a few different answers from a few different people.
Marie
Marie,
I think the Voltaren was a steroid drop. The eye would bother me a bit like wind or a cold in it or I might have felt uncomfortable. The beginning of pain I believed. I would put a drop or two in, then the feeling would go away.
I recently had a problem with my eye all of a sudden, so I thought there may be an infection of sorts. I had to see my eye doctor's peer because she was on vacation. She said that the eye looked to form an elongated calcium deposit (because the eye wasn't focusing on anything) and a piece of the calcium broke off, which caused me the eye pain. She prescribed Xibrom. I talked to her about the lens since this was her area and she said I had to use the Xibrom 2x daily with the lens. My eye color is also different, that is why I asked for the lens.
It seems you have to be measured for this lens and it takes a lot of work to have one. This includes changing the lens solution about every two days if you're not using the lens. You can't just leave it in. Constant care does not work in my schedule at this time, so I put the process on hold.
Gale
How does the eye color change? The reason I ask is that my Father mentioned to me over Thanksgiving that his father was blind in one eye. The color of his eye changed in this eye as well as he lost his sight.
We have never been able to figure out if the VHL came from my Fathers paternal or maternal side. (It's a long sordid tale for the times back then, but the brothers, sisters, half brothers and sisters are all first cousins because my grandfather married the sister to my grandmother first and had kids, then he married the sister - my grandmother- and the ex-wife/sister married his brother- yes, it's confusing).
His father said it was from an accident where he got something in his eye once. But, Dad said his father never went to an eye doctor over it and he always thought the story just didn't sound right.
Wow Donna!
Gale- Is the lense you are referring to a contact lense? Were you considering this lense for cosmetic reasons or does it help the eye in some way?
Marie
Gale,
Thanks for all the information. I feel a little more sane knowing I'm not alone with these eye issues: pain, drugs, ennucleation, eye color. Don't think you are in the clear- I will be calling on you in the future with more questions (ha ha ha).
Thanks again,
Marie
Well, I guess that is something else I can keep an eye on. ;)
When I'm in line somewhere, I usually look at the back of people's head for an incision line. Now I can look at their eyes too.
I once saw an older man with an incision line in the back of his head, but he seemed too grouchy to approach.
Be well,
Gale
Would sutent be suitable for me, I have no vision in my right eye and still have small tumors in my spine and brain area. My left eye has again became active with tumors and it will be treated with cryo,. Do you sugggest anything else,
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