Ocular Lymphoma

Weird as it sounds, I apparently have lymphoma in my right eye. I'm in the care of of an outstanding team of specialists at Johns Hopkins Hospital in the US and have no reason to doubt it. They have now ruled out retina issues, infections, and all other possible causes. They took a biopsy of the eye two days ago and it'll be awhile before results are back.

They are not speculating on what kind of lymphoma it might be. I don't yet have a firm diagnosis, treatment plan, or prognosis. Meanwhile, I can't see out of that eye and have trouble with the other due to an unrelated problem.

I'm pretty anxious. Does anyone have any suggestions for me, especially credible sources of information? I would love to have a much better idea of what different kinds of ocular lymphoma exist and what treatment options there might be. Heck, any sort of relevant experience or resource would be welcome.

On the CLL front, after five years of W&W my disease took off in 2014 and was treated with BR in early 2015. I have since relapsed but I have no significant symptoms other than a fast doubling time, about every four months. I don't need treatment yet for that all on its own and will have excellent choices when the time comes. My CLL specialist said it would be extremely rare for my eye problem to be CLL but he couldn't rule it out.

Thanks for all. You folks are great. Carry on!


Washington, DC


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5 Replies

  • There is very little on this topic... but here is an overview of CLL infiltrates of the eye.


    It is very rare, I have only known two patients diagnosed with it in almost 20 years. Both were treated successfully...

    Older study



  • Thank you, Chris. I'd never heard of this and am just getting my bearings. Guess I'll find out when pathology sends its report inn a couple of weeks. I'll let you know.


  • Please keep us posted... the risk of this is tiny, but not zero...


  • Hi Geoff my husband had swollen and painful ear lobes for 2yrs and it wasnt untill we moved and changed consultant that a biopsy was done and CLL comfirmed. After scans and bonemarrow biopsy she decided treatment was now needed so he went on F C R trial and he is now 12 months post chemo and ears and bloods are fine .Like you they were doubtful it was CLL i no its not easy but keep positive . jenny Uk

  • Thank you, Jenny. I found this very reassuring. Much appreciated.

    It'll still be a week or two before all the pathology reports come in. Lots of people have been telling me this entire occurrence in my eye is extremely rare, including every single specialist I've seen. They think I'm interesting.

    I'm hoping the final diagnosis is CLL just because it's fairly easy to treat. Who knows where this will go, though. We'll see. I'll let you know. Thanks again--


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