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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attarintiki
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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.
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.
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.
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
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
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
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.
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.
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.
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.
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.
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!
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.
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.
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.
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!
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