Ocular Lymphoma

[Eagle5327]

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!

Geoff

Washington, DC

[Cllcanada Top Poster CURE Hero]

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

eyecancer.com/eye-cancer/co...

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

Older study

nature.com/eye/journal/v17/...

~chris

[Eagle5327 in reply to Cllcanada]

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.

Geoff

[Cllcanada Top Poster CURE Hero in reply to Eagle5327]

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

~chris

[very]

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

[Eagle5327 in reply to very]

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--

Geoff

[Cindy1462 in reply to Eagle5327]

How are you now Geoff? I know this is an old post but I am being tested for something like this and wondered what the treatment was. I hope you got it sorted.

[Eagle5327 in reply to Cindy1462]

Hi, Cindy--

Sorry for the delay getting back to you. Would be interested to know what you're experiencing.

Long story very short, my vision problems (and later, seizures) turned out to be spread of my CLL to my retinas, optical nerves, brain lining, and elsewhere in my central nervous system. It's an extremely rare condition -- it almost never happens with CLL (I'm told that I'm only the second person in the medical record).

One-of-a-kind treatment by my team of specialists was two rounds of intrathecal cytarabine (chemo normally for brain lining cancer via a spinal tap) and ibrutinib (at high doses used for follicular lymphoma). The brain chemo wasn't too bad but I couldn't tolerate the high-dose ibrutinib due to internal bleeding.

The treatments have worked, though. I am now on acalabrutinib and doing fine. I'm in hematological and neurological remission at the moment.

Most important, I feel great. Permanent damage to one eye but so it goes. But the seizures have stopped completely -- they were the worst. Yay!

So all is good. Good luck with your own investigation! Please let me know how it goes. I'll be thinking of you and sending you best wishes.

Take care and be well--

Geoff

[Cindy1462 in reply to Eagle5327]

Hi Geoff

Thank for your reply. Fantastic that you are in complete remission after what sounds a scary time! Yes my symptoms only started a few weeks ago with one semi dilated pupil and blurred vision in that eye. After loads of tests and scans the ocular oncology team are of the conclusion that cll has infiltrated my eye. They say there is thickening of the skin and pooling of some liquid. I am due a retinal biopsy on Friday. I am a very anxious person and this is so scary for me. I have had a brain MRI and nothing showed up on that so hopefully it is just the eye. I am reassured by your story and great full that you have shared it. Long may your remission continue. Take care. Cindy (UK)

[Eagle5327 in reply to Cindy1462]

Hi, Cindy --

For better or worse, this might be a longer and more technical exchange than suits the general discussion board. Let's go offline -- I'll send you a personal message in a few minutes. Would you please let me know if you don't get it?