FNHL in retina

Hi GKH,

 I have no personal information to share on this and didn't find much on the internet to help either. Is this something you are dealing with right now? I suppose one could talk talk to their eye doctor and see what information they may have. Hopefully somebody will pop in with info to help you out. Take care...Sue

(FNHL-2-3A-6/10-age 62)

unknown said:

Maybe

I have known for some time something was going on in my eyes. My onc suggested I go to John Hopkins ASAP. Though its rare, it is a very serious condition, so he reasons why take a chance? My ophthalmologist sent me to a retina specialist. He said I had a cavity with a small set of radiating fissures from it on my left retina. My right eye has a dark spot on the lens. Neither appears to be cancer but he is not sure what they are. However my right retina has a thin film on it which could be dead cancer cells. He wants to wait till April and do the extensive exam again and look for changes.if it proves to be this rare condition then the prognosis is very poor. Only treatment is radiation.

My Mom is dying. She was curled in a knot today and told me goodbye. Age 89. Its hard to deal with all this at the same time so I decided to wait till after my next eye exam to decide about Johns Hopkins. I actually feel the best in months except for the vision.

I'm so sorry Gary about your mom and everything that you're going through! I will keep you both in my prayers. Loosing one's mom is so hard, it doesn't matter what age you are, you still need your mom! Take care sweet man and please keep us updated on your situation. (((Warm Hugs)))

Sincerely,

Liz

unknown said:

Maybe

I have known for some time something was going on in my eyes. My onc suggested I go to John Hopkins ASAP. Though its rare, it is a very serious condition, so he reasons why take a chance? My ophthalmologist sent me to a retina specialist. He said I had a cavity with a small set of radiating fissures from it on my left retina. My right eye has a dark spot on the lens. Neither appears to be cancer but he is not sure what they are. However my right retina has a thin film on it which could be dead cancer cells. He wants to wait till April and do the extensive exam again and look for changes.if it proves to be this rare condition then the prognosis is very poor. Only treatment is radiation.

My Mom is dying. She was curled in a knot today and told me goodbye. Age 89. Its hard to deal with all this at the same time so I decided to wait till after my next eye exam to decide about Johns Hopkins. I actually feel the best in months except for the vision.

Hi Gary.  I'm sorry to hear about your mom and the issue with your eye.  When it rains it pours!

Maybe you shouldn't wait on the appointment with Johns Hopkins.  I realize you want to be with your mom, but she probably would want you to take care of yourself - right?

I'm not aware of anyone with exact condition as yours but Carol (cbpgill26) just emailed me yesterday and she had the more common Diffuse B Cell type in her retina and went through radiation I believe. She's doing pretty well but has hernia surgery coming up on the 22nd.  You might contact her for some info regarding her experience.

Sorry I can't offer more than this and some big hugs and positive thoughts.  Hang in there and please keep us posted.  You know we are here for you.

Jim

unknown said:

Maybe

I have known for some time something was going on in my eyes. My onc suggested I go to John Hopkins ASAP. Though its rare, it is a very serious condition, so he reasons why take a chance? My ophthalmologist sent me to a retina specialist. He said I had a cavity with a small set of radiating fissures from it on my left retina. My right eye has a dark spot on the lens. Neither appears to be cancer but he is not sure what they are. However my right retina has a thin film on it which could be dead cancer cells. He wants to wait till April and do the extensive exam again and look for changes.if it proves to be this rare condition then the prognosis is very poor. Only treatment is radiation.

My Mom is dying. She was curled in a knot today and told me goodbye. Age 89. Its hard to deal with all this at the same time so I decided to wait till after my next eye exam to decide about Johns Hopkins. I actually feel the best in months except for the vision.

GKH,

Like everyone else here, I have never heard of this odd eye involvement. When I was on abvd, my eyes watered badly for a time and were very red. My NP said the drugs were in the tear ducts had inflammed them, but it only lasted a short while. You most likely have heard of the "blood-brain barrier," so there are some areas where even  systemic chemo cannot reach. Since you have not been told that the issues are explicitly cancer, perhaps it is some side-effect, or something else. You are in my prayers,

Max