Cataract surgery : I often read the experiences... - CLL Support

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Cataract surgery

attarintiki profile image
37 Replies

I often read the experiences on CLL shared by our group on HealthUnlocked, and it's reassuring. I was diagnosed with CLL in 2013. After a long period of watch and wait (W&W), I was given only 2 cycles of chemo (BR) in 2019 instead of the planned 6 cycles due to severe side effects. Fortunately, I experienced a five-year remission. Recently, however, my white blood cell and lymphocyte counts have increased. Once again, I am on W&W for starting treatment.

In the meantime, over the past year, my vision, particularly in my left eye, has worsened. An ophthalmologist diagnosed me with cataracts in both eyes, recommending surgery starting with the left eye. A second opinion revealed grey spots in the vitreous humor of the left eye, possibly cholesterol crystals or lymphocytes linked to CLL recurrence.

I'm unsure whether to proceed with the cataract surgery. If anyone has faced a similar situation, please share your experiences and advice. I shall be grateful.

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37 Replies
Ellieoak profile image
Ellieoak

I have not had cataract surgery but am interested in knowing how yours turns out. Anna

attarintiki profile image
attarintiki in reply to Ellieoak

Thanks for your response. I will keep you posted on the developments with my procedure.

attarintiki profile image
attarintiki in reply to Ellieoak

Thanks for your response. I will keep you posted on the developments with my procedure.

Mwagner profile image
Mwagner

I was diagnosed with CLL 7 years ago and my optometrist diagnosed cataracts later. My hematologist said no issue getting surgery. I had both eyes done and no problems so far after two years.

attarintiki profile image
attarintiki in reply to Mwagner

Many thanks for your positive feedback about the Cataract Surgery.

Nucleusman profile image
Nucleusman

had cataracts done stopped Acalabrutinib 5 days before and after don’t have them both done at once in case something goes wrong

attarintiki profile image
attarintiki in reply to Nucleusman

Thanks for providing valuable information about intake of Acalabrutinib pre and post operative period .

Zoy2004 profile image
Zoy2004

Had 2 eye cataract removed, did not stop imbruvica . Don’t need glasses now

attarintiki profile image
attarintiki in reply to Zoy2004

Many thanks for the feedback

thb4747 profile image
thb4747

I’ve had one done with no issues.

attarintiki profile image
attarintiki in reply to thb4747

Your kind response is very much reassuring.

Mijoed profile image
Mijoed

both eyes done just over a year ago. I was previously short sighted but opted to have good distance vision. Now I just need glasses for reading.

As for the vitreous humor, I too have some small "cloudy" patches. They weren’t noticeable while I had cataracts but were initially annoying once my lenses were replaced. Now, I don’t really notice them.

Overall, very happy that I had my eyes done.

attarintiki profile image
attarintiki in reply to Mijoed

I greatly appreciate your detailed explanation of the procedure. While examining my eye, my ophthalmologist found floating particles in the vitreous humor of my left eye, suggestive of cholesterol particles. This condition was diagnosed as Synchysis Scintillans. However, upon seeking a second opinion from another ophthalmologist, I was informed that these particles could also be leukocytes, given my preexisting CLL. He advised ruling out the presence of leukocytes in the vitreous humor. If leukocytes are present, I may need treatment for my CLL to bring down my leukocyte count before undergoing cataract surgery.

Hazel33 profile image
Hazel33

I’m watch and wait but due to have treatment. I had cataract surgery on only one eye and it seems fine.

attarintiki profile image
attarintiki in reply to Hazel33

Than you very much for the feedback

charliegirl profile image
charliegirl

I had one eye done 6 months ago while on venetoclax..Excellent result. Since then my CLL has become resistant to venetoclax and just started zanubrutinib. Second eye now urgent but I have to wait for CLL to be stabilised - as zanubrutinib will have to be stopped for one week. Good luck with yours

Charlie Girl

skipro profile image
skipro in reply to charliegirl

Hi

I’m on a 2 year V+O at month #15

Just curious how long you were on Ven before your CLL became resistant?

Thx

Skipro

charliegirl profile image
charliegirl in reply to skipro

Hi SkiproIt happened a year into retreatment. First time it worked like a dream.

Good news is that zanubrutinib seems to.be working.

Charlie Girl

skipro profile image
skipro in reply to charliegirl

I’m happy that Zanu is working well for you

Good luck and God bless you

attarintiki profile image
attarintiki in reply to charliegirl

Thank you very much for your kind feedback and also for your good wishes.

Graham64 profile image
Graham64

I have been on Ibrutinib for CLL for 6 years. About 6 months ago I had cataracts removed and new lenses inserted. I stopped the Ibrutinib for 3 days before and after, just to decrease the risk of any bleeding. Otherwise no problems at all, and I now have perfect vision for the first time in my life. The grey spots you refer to - could they be floaters in the vitreous of the eye and not CLL-related at all? Graham64

attarintiki profile image
attarintiki in reply to Graham64

Thank you very much for your kind response and clarification on the floating objects. During my second review, the ophthalmologist expressed concern that the floating particles might be cholesterol or leukocytes (given my CLL diagnosis) and suggested identify them before surgery. I was a bit confused. Nevertheless I greatly appreciate your input

ChristyAnne_UK profile image
ChristyAnne_UK

Hi..

CLL: Diagnosed Jan 2014. On W&W. Numbers low and stable since. No treatment to date.

Eyes: Been treated with Eylea injections for 6 yrs, and then Ozurdex steroid implants for the past year to treat macular oedema (caused by diabetic retinopathy, in my case). Could your floaters be macular oedema?

Cataracts in both eyes diagnosed as well, starting about two years ago. Worst in right eye, which was delayed for so long that I was blind in the right (could only see light and shade - nothing definable), and rapidly advancing loss of vision in the left.

Finally had cataract surgery in the right in April. The surgeon told me afterwards that the cataract was "so huge", it was putting pressure on the supporting structures, and "the bag" burst as soon as he started the procedure. I hadn't been aware of time passing, but it took about an hour. (Normally much less, apparently.) Process was painless, and I was quite happy on sedation.

Unfortunately, within a couple of days, the vision clouded over again, and although I can now see in that eye, and make out definable objects, it's very foggy, and reading is difficult. Do-able with a magnifying glass, but a royal pain, and my eyes soon feel sore. I am so jealous of all of you who can now see perfectly! But happy for you, all the same!

I haven't given up hope, though. My ophthalmologist has said I can have a quick laser procedure in a few months that should resolve the problem.

Meanwhile, I'm hoping surgery on the other eye will be done, and will be straight forward.

So.. my afvice would be don't delay. One at a time, as others have said, but if you have a choice (ie - not NHS), don't dither.

Hope it all goes well.

attarintiki profile image
attarintiki in reply to ChristyAnne_UK

Hello ChristyAnne,

Many thanks for sharing your experiences with vision issues due to delayed cataract surgery. Thanks for your kind advice to not delay cataract surgery and to opt for an early procedure instead. I would like to share with you my own cataract-related findings. During a routine eye examination, the ophthalmologist observed floating particles in the vitreous humor of my left eye, a condition known as Synchysis scintillans (floating particles of cholesterol). Upon seeking a second opinion from another ophthalmologist, he explained that these particles could also be leukocytes, given my preexisting condition, CLL. He advised ruling out the presence of leukocytes in the vitreous humor. If leukocytes are present, I may need treatment for my CLL to reduce the leukocyte count before undergoing cataract surgery.

ChristyAnne_UK profile image
ChristyAnne_UK in reply to attarintiki

Hi to you, too, Attarintiki..

That's very interesting. I was diagnosed with CLL prior to starting treatment for macular oedema. None of the ophthalmologists I've seen to discuss scans of my eyes have ever mentioned it. Is it because the differences between your floaters and mine are so clearly differentiated?

I am due for my next eye appointment on 29th May. You've given me something else to ask about. Too late for me to have CLL treatment prior to cataract surgery, though. I wonder what difference it would make? I don't think, given a choice, I would have opted to wait, though, as I was blind in my right eye already, and panicking about losing vision in the left. I live alone, so without support, I was worried about how I would function, as almost everything is managed on-line and requires sight.

attarintiki profile image
attarintiki in reply to ChristyAnne_UK

Hello ChristyAnne,

It sounds like you have been dealing with a lot, and it's completely understandable to feel concerned and have questions about your treatments and diagnoses. The relationship between CLL and eye conditions can be complex, and it's possible that the ophthalmologists focused on the immediate concerns, considering your normal blood reports which show a normal Leucocytic count.

Bringing it up at your next appointment is a great idea, as it may provide additional insights into your exact situation (When I first saw my doctor, she explained that floating particles are common, particularly in certain age groups due to cholesterol. She assured me that they do not interfere with cataract surgery, which is essential to relieve pressure and correct the vision)

It's clear that you've made the best decisions you could with the information and circumstances at hand, especially considering the urgency of your vision issues. The prospect of losing more vision, particularly when living alone, is incredibly daunting, and your decision to proceed with cataract surgery to preserve your sight is entirely understandable.

I hope your upcoming appointment goes well and that you get the answers and support you need. It's important to remember that you've shown great strength and resilience in managing these health challenges on your own. Don't hesitate to lean on the medical professionals for support—they are there to help you navigate through these complexities. Take care, and I hope you find some comfort and clarity soon.

ChristyAnne_UK profile image
ChristyAnne_UK in reply to attarintiki

Thank you so much for your kind, reassuring words. I hope your situation is resolved, too, which is where this thread started! ;-)

NaturalWaze profile image
NaturalWaze

Hi Attarintiki,

What did the 2nd opinion Dr advise about the spots? Do they need to be addressed, and if so, does it need to be before cataract surgery?

NW

attarintiki profile image
attarintiki in reply to NaturalWaze

I would like to share with you the second opinion of my own cataract-related findings. During a routine eye examination, the first Ophthalmologist observed floating particles in the vitreous humor of my left eye, a condition known as synchysis scintillans (floating particles of cholesterol). Upon seeking a second opinion from another ophthalmologist, he explained that these particles could also be leukocytes, given my preexisting condition, CLL. He advised ruling out the presence of leukocytes in the vitreous humor. If leukocytes are present, I may need treatment for my CLL to reduce the leukocyte count before undergoing cataract surgery.

Flute117 profile image
Flute117

I am two and a half years post V+O treatment and also have “floaters”. Ophthalmologist explained it is from vitreous gel detaching, is unfortunately quite common in aging and had no concerns about the cause.

I just had right eye cataract surgery last week (which was a breeze) and will have the left eye done next week. I have not become more aware of the floaters since the cloudy lens was replaced. It is so nice to see clearly again!

attarintiki profile image
attarintiki in reply to Flute117

Hello Flute,

Thank you very much for your positive feed back. Your message is really encouraging and reassuring.

BeckyLUSA profile image
BeckyLUSA

Just saw my CLL specialist last week and asked him about it as I am due for my annual ophthalmologist appt on Wednesday. Cataract surgery will be this year or next. He said not an issue and really did not HAVE to stop my Ibrutinib but if I felt better doing it, 2 days before and starting back day after would be fine.

BeckyL USA

attarintiki profile image
attarintiki in reply to BeckyLUSA

Hello BeckyLusa,

Thank you very much for sharing the information. I wish you good luck with the procedure.

rcusher profile image
rcusher

I just had cataract surgery on both eyes approx. 2 months go. First the left eye then 3 weeks later the right eye. Absolutely no problems and my vision is so much better, I don't even need my glasses anymore. I am currently on a clinical trial with Pirtobrutinib. The doctor in charge of the trial saw no problem going forward with it.

Best of luck with yours,

Jack

attarintiki profile image
attarintiki in reply to rcusher

What an encouraging feedback. Many thanks rcusher.

Newdawn profile image
NewdawnAdministrator

I had cataract surgery whilst on Venetoclax and it was very successful. This was in 2020. I’ve needed further laser surgery since due to capsular opacification (which is seemingly quite common) and this has restored my sight again.

Best wishes,

Newdawn

attarintiki profile image
attarintiki in reply to Newdawn

Hello Newdawn, It's been a while since I heard from you. Thank you for sharing your experience with cataract surgery and subsequent developments. It's very encouraging and reassuring. Thanks again!

Best regards

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