Treatment and ocular lymphocytic leukemia - CLL Support

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Treatment and ocular lymphocytic leukemia

mickimauser11 profile image
9 Replies

My diagnosis in 2017Trisomy12 unmutated 500000 wbc 397 absolute lymphocite Count 6.1 hemoglobin I joined a threefold trial Ibrutinib, Obinutuzumab and Venetoclax. When I had uveitis on both eyes I felt it was temporarily but treatment was necessary. I didnt know then that there is ocular CLL and that it was also treated with Ibrutinib. No cancercells were detected and I went Off drugs. My Eyes are back to normal. Sources sciencedirect.com Dr. Chaucan 10/16 successful treatment of ocular CLL with Ibrunitib( case report and Review of literature)

Eye cancer.com CLL Dr. Finger Eye cancer Center New York That is why I recommend having your eyes checked regularly.

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mickimauser11
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9 Replies
AussieNeil profile image
AussieNeilAdministrator

Thanks for your update on what is a rare condition - CLL eye involvement. Glad treatment cleared that up for you.

I couldn't find that Science Direct reference and I'm sure others would like to be able to locate it. Are you able to share that reference via a computer (much easier than on a mobile device), or provide some more clues?

Thanks,

Neil

CLLerinOz profile image
CLLerinOzAdministratorVolunteer in reply to AussieNeil

Here ‘tis, I think:

sciencedirect.com/science/a...

mickimauser11 profile image
mickimauser11 in reply to CLLerinOz

Thank you for helping out

mickimauser11 profile image
mickimauser11 in reply to AussieNeil

There is another source eyecancercenter.com New York Eye Cancer Center Dr. Finger CLL in other groups are quite a few people with eyeproblems and uveitis that is why I thought it is important to have your eyes checked as it can serve es a hiding place for CLL cells

LeoPa profile image
LeoPa

Wow, some numbers you had at diagnosis. Did you have no telltale problems during the time they rose to that level?

mickimauser11 profile image
mickimauser11 in reply to LeoPa

Yes B symptoms but I attributed it to age because I was always healthy and had no other health issues still dont - just my thyroid medication and still on Venetoclax Im u MRD but they want to ge t me in a deeper remission had to restart treatment Oct20 due to reactivation of EBV invading bloodcells

tesoro5858 profile image
tesoro5858

Thank you for posting this. I am currently experiencing scleritis, initially in one eye which progressed to both eyes. I am being evaluated by opthalmologists at my cancer center. I have been prescribed different eye drops which seem to be helping. Treatment naive for CLL but am on obinutuzumab for AIHA. The opthalmologists have referred me to rheumatology for suspicion of other auto-immune underlying conditions which could manifest in the eyes. I am a work in progress.

janvog profile image
janvog

We are in an age where eyes need special attention. I recommend the 200 page book by Mayo Clinic GUIDE DO BETTER VISION which provides the "education" and "orientation" we should have to take care of vision. But it also details the procedures and consideration which the eye specialist consider. Nutrition and vitamins have assumed an increasing importance for avoiding age-related deterioration. Example the AREDS 2 formula developed over several years of large studies.

mickimauser11 profile image
mickimauser11 in reply to janvog

Thank you

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