CSR - CLL: Hello. I have had CLL since 201... - CLL Support

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CSR - CLL

Lapo
Lapo

Hello.

I have had CLL since 2012. Recently diagnosed with Chronic Central Serous Retinopathy in my right eye, which is a permanent build-up of fluid behind the macula causing sight distortion.

There is medical research suggesting that leukemic infiltration is a possibility, albeit a rare one. Have any of you CLLers experienced eye problems of the sort?

Stay cool. Lapo

19 Replies
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What are the symptoms

Lapo
Lapo
in reply to Ironj

Distortion in one eye; lines are not straight and there is a blur in the centre of the field of vision, colours are dulled.

Yes, I have posted before about my eye issue. I gave been on Ibrutinib for over a year abd 1/2 at reduced dosage due to other side effects. Early this year I noticed decreased vision in my right eye and saw the retinologist. She said dry eyes plus pupil stuck to the lens. It looked like I had a double pupil. It was treated with anticholinergic and steroid eye drops. Several months later the pupil looked like it was back to “normal” but I still have some blurry vision. The MD said part of the pupil is still stuck to the lens. She said cataract surgery will fix it. But it has to approved by my CLL specialist. So we’ll see. My numbers are all within the normal range although when I had to hold Ibrutinib for dental work, axillary nodes recurred within 3 days. I am also on IVIG every 4 weeks. Please keep us in the loop as you monitor the fluid build up. Best wishes.

Lapo
Lapo
in reply to MsChief

Thanks MsChief.

Did your specialist think the Ibrutinib was to blame for the the blurry vision?

MsChief
MsChief
in reply to Lapo

The retinologist said “ Maybe, but if Ibrutinib helps you then stay on it “ which is not the most comforting response. My oncologist is aware of the problem. Otherwise, except for ibability to sleep at night, severe neck, joint pain and GERD, I’m doing well on Ibrutinib and do not want to stop it. I would like to have the cataract surgery and understand it is “bloodless” - will see onc MD end of month to further discuss.

Lapo
Lapo
in reply to MsChief

Thanks and good luck with cataract surgery, if you are able to get it.

I understand it is a "straightforward" op.

tamlee4664
tamlee4664
in reply to MsChief

This sounds crazy but I’m so glad to hear your neck and joints are hurting! I can’t hardly move my shoulder and my neck is killing! At least I’m not alone! Keep up the fight! Stay strong!

Lapo
Lapo
in reply to tamlee4664

Me too. Can hardly move.

Was diagnosed with CLL/SLL in 2013. About a year ago or so, I had surgery on one eye to remove a tissue growth on my retina. I had to have 2 surgeries since the original surgery did not do the trick and the growth reoccurred. My symptoms are blurry vision and when I look at straight lines, they are wavy. But according to my eye doctor, doing that surgery apparently resulted in inflammation occurring within the retina of my eye. One can see multiple pockets of fluid buildup within the retina. These pockets are apparently causing my sight distortions. I have been on several different anti-inflammation eye drops and anti-inflammation steroid injections. All have had no effects with the inflammation continuing to increase. Apparently, these treatments are not effective because during the initial surgeries, some floaters and its associated fluid were removed. Apparently, I am told that without this floater/fluid, the effectiveness of anti-inflammation eye drops of steroid injections will not be effective because it is this floater/fluid that retains such eye drop or steroid injection medication. In other words, without the floater/fluid material, any anti-inflammatory medication applied to the eye simply and very quickly dissipates. It is, i am told, this floater/fluid material which attracts and stores anti-inflammation medications, resulting in long term exposure of the medication to my chronic retina inflammation issue. So due of the fact, that I have no long have any of this floater/fluid stuff in my eye, the next step is to insert a pellet into my eye, which is a slow dissolving anti-inflammatory medication. the theory is that this pellet will expose the pockets of inflammatory fluid to a more constant and sustained exposure of anti-inflammation medication and hopefully will have a position effect on shrinking my pockets of retina inflammation and improve my vision, My doctor thinks that it was the surgeries that I originally had with caused this issue and not my CLL. Note that I am not under any CLL medical treatments, other than some nutritional supplements. When I see my eye doctor next I will ask him about Chronic Central Serous Retinopathy.

Lapo
Lapo
in reply to markjeep51

I am not under any CLL treatment at the moment either.

What you are writing does not inspire to seek eye surgery of any kind. I have read that laser treatment is an option...

Hello, Lapo -- I may have a very similar condition. I have been diagnosed by my CLL expert and my retina specialist with "CLL with leptomengial and ocular spread." It's extremely rare for CLL to infiltrate the eyes but mine did, along with the brain lining and cerebrospinal fluid.

My eye problems began in early 2017 with a similar condition to yours -- buildup of fluid behind the retinas. I found a retina specialist at Johns Hopkins Hospital in the US, who first eliminated infections as a possibility. An eye biopsy was inconclusive. Because there was so much activity in my eyes, he worked with my CLL specialist and ordered an MRI. That in turn led to a spinal tap which finally confirmed the underlying CLL cause. (I'm leaving out lots here, including seizures due to lesions in my brain lining, prior treatment, etc.)

I was successfully treated last year with a very unconventional approach of high-dose cytarabine, which is brain cancer chemo infused directly into the spinal fluid, plus high-dose ibrutinib.

It worked. I'm in remission again, feeling great, and tolerating the ibrutinib just fine.

My retina specialist said that I am only the second person in the medical record with documented spread of CLL to the optic nerve and retinas. He and his colleagues think it probably occurs more often but ophthalmologists are trained not to look for CLL because, the theory goes, that it never happens. I'm proof that it does.

My retina specialist and two of his residents are now writing a paper for a medical journal on my case in collaboration with my CLL expert. I've given permissions etc but have not yet seen the draft paper.

Bottom line is that an eye biopsy and/or an MRI and maybe a lumbar puncture (medicalese for spinal tap), would probably necessary in order to clearly diagnose CLL. If you're in the US and would like a referral, please let me know and I'll help you out. Or, if you just want to vent with someone who's been through a rough journey with similar eye issues, let me know via a private message.

Best of luck with your journey. CLL is a beast for sure.

Geoff

Washington, DC

Lapo
Lapo
in reply to Eagle5327

Thanks Geoff. I live in London and will be seen by a specialist at the Kingston Eye Hospital, Retina Unit. Hopefully they will shine a light on this...not too bright, please! I expect they will carry out a fluorescein angiography.

The big question is always: is it CLL-related or not?

I find specialists reluctant to:

a) talk to each other

b) go out on a limb and suggest causes outside of their filed of expertise

Agree with your observations for sure. Good luck with your appointment. Please let us know how it turns out!

BTW, if an eye biopsy is indicated, I've had one. It's significant surgery and not fun at all. Plus it comes with its own set of risks. Hope you can avoid that and end up with a more straightforward diagnosis than CLL. Fingers crossed for you!

Following this thread closely, as I have been diagnosed with extreme PVD— posterior vitreous detachment—after experiencing most of the symptoms others described above—wavy lines and blurred vision in one eye. I had floaters for a while that made it seem like I was looking through a black veil. They’ve gone away however. I’ve seen 2 ophthalmologists and am scheduled to see a retinal surgery specialist tomorrow. They’ve so far told me surgery is the only option for clearing this up because it won’t heal on its own. However surgery on anything is terrifying to me now, and more so after reading the posts above. Nothing heals properly for me any more, and this is my eye! I’m currently 3 yrs into W/W, no treatments because I still feel pretty good. Will most likely try and postpone any recommended surgery until I see my oncologist in Oct. and just hope my eye doesn’t worsen. It never occurred to me that the issue could be CLL related.

Hi - I had a detached vitreous of my right eye several years ago. I have only been on Ibrutinib for a couple of years. The retinologist repaired it with laser surgery. This is the eye that I am having some blurry vision in and also have had floaters for years, now have a black spot that floats around occasionally. This is the eye that has the pupil stuck to the lens - now better - but the retinologist says cataract surgery is the only way to correct it. Not sure of the etiology of the current issue. Hope things resolve for you fairly soon.

I also have CSR in the right eye, diagnosed about 7 years before my CLL diagnosis, but flaring up, with choroidal neovascularization as well, in 2013, two years after the CLL was diagnosed. I get it treated with injections every 5-8 weeks, and recently had surgery for a traumatic cataract that likely developed in response to all the shots. Vision is still impaired, but it’s great that the light once again gets in.

No one has linked the CLL with the retinal problem. But I wonder....

All the best to you and other CLLers struggling with mysterious and unusual vision issues.

And to you my friend.

😇

Thanks to all for all the very informative comments.

An internet search dug up this:

researchgate.net/publicatio...

yes I have on and off bouts of swollen eye lids and conjunctivitis for two years now . occasional eye ache , cll for 3-4

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