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FNHL in retina

GKH
Posts: 288
Joined: Jul 2012

Has anyone ever heard of an instance of follicular lymphoma behind the retina? I understand it is rare but does sometimes happens. Most retinal lymphomas are large b-cell type. In any case it is very serious as the inside of the eye is part of the central nervous system protected by the blood brain barrier. This means Rituxan doesn't go there. Any first hand info would be appreciated.

GKH
Posts: 288
Joined: Jul 2012

mean survival time is 3-9 mos.

Machir
Posts: 32
Joined: Mar 2013

Hi Gary. I'm very sorry to hear about what you are going through. Having to deal with your and your mom's health issues at the same time is a heavy burden. I hope you can find some peace to help your through all of this. I've never heard of the condition you described so I'm no help experientially. It sounds like you are getting good advice. All I can think of is what you are already doing....talk to the best doctors you can find. When I was diagnosed I was fortunate that one of the top lymphoma doctors in the world was in my area. As it turned out all that brain power wasn't needed for my run of the mill diagnosis.  Sounds like what you are facing that brain power could be key.  I hope you find someone with an answer for you.  I'll be praying that comes true. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

Since it is so rare, statistics do not mean much. Let us hope for years !

max

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

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)

GKH
Posts: 288
Joined: Jul 2012

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.

anliperez915's picture
anliperez915
Posts: 740
Joined: Sep 2011

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

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

Ohhh, I'm so sorry about your mom...makes my heart sad for you. Please take care and know you are in my prayers. I miss my mom so very much. God bless you. Love...Sue

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

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

GKH
Posts: 288
Joined: Jul 2012

Thanks for all the kind thoughts. Mom went to hospice today. I will be ok. Thanks again for being concerned about my situation. As I said I actually feel pretty good right now. I changed my glasses which helped a lot even though they were only six months old.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

GKH,

I have an older friend who has been Stage 4 prostate cancer for about three years now. He has been off and on various pallatative drugs during this time, and currently feels better than he has felt in the last ten years.  I take him for drives in my antique car whenever I can.

Statistical estimates of life expectancy mean nothing, as best I can tell.  I hope to be talking to you 20 years from today...

max

GKH
Posts: 288
Joined: Jul 2012

I am a bit strained at the moment. Watching my once beautiful, young and vibrant mother die is difficult.

i am just hoping for the best on the eye and waiting for my appointment on April 8.

Courage is when you are scared to death, but saddle up anyway

John Wayne

You can run but you'll just die tired

Unknown

i agree on the stats. Hopefully I will know more after the 8th. 

illead's picture
illead
Posts: 476
Joined: Aug 2012

Sorry for the difficult days ahead GKH.  Please know that our thoughts are with you, your mother and your family. Bill & Becky

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