Treatment and ocular lymphocytic leukemia - CLL Support

CLL Support

23,258 members39,957 posts

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.

Written by
mickimauser11 profile image
mickimauser11
To view profiles and participate in discussions please or .
Read more about...
9 Replies
AussieNeil profile image
AussieNeilPartnerAdministrator

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
CLLerinOzAdministrator in reply toAussieNeil

Here ‘tis, I think:

sciencedirect.com/science/a...

mickimauser11 profile image
mickimauser11 in reply toCLLerinOz

Thank you for helping out

mickimauser11 profile image
mickimauser11 in reply toAussieNeil

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 toLeoPa

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 tojanvog

Thank you

Not what you're looking for?

You may also like...

Ocular Lymphoma

Weird as it sounds, I apparently have lymphoma in my right eye. I'm in the care of of an...
Eagle5327 profile image

Dr. John Allan - Chronic Lymphocytic Leukemia (CLL) Patients @Undetectable Measurable Residual Disease (MRD) after Ibrutinib Plus Venetoclax

ASH 2022: Dr. John Allan on Outcomes for Chronic Lymphocytic Leukemia (CLL) Patients with...
lankisterguy profile image
Volunteer

Chronic Lymphocytic Leukemia Therapy Guided by Measurable Residual Disease

From the New England Journal of Medicine 10th December 2023 "The CLL treatment landscape has...
Jm954 profile image
Administrator

BTK C481S-Mediated Resistance to Ibrutinib in Chronic Lymphocytic Leukemia

It gets kinda technical but this is some great research on ibrutinib resistance by Dr. Woyach....
bkoffman profile image
CLL CURE Hero

Chronic lymphocytic leukemia treatment algorithm 2022

This 29 November 2022 review article published in the Blood Cancer Journal presents an...
CLLerinOz profile image
Administrator

Moderation team

See all
Newdawn profile image
NewdawnAdministrator
CLLerinOz profile image
CLLerinOzAdministrator
AussieNeil profile image
AussieNeilAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.