Any Knowledge of CLL in the eyes?

[cll2013]

A biopsy confirmed a diagnosis of CLL in both lower eyelids. This is a rare event. Neither my hematologist-oncologist or CLL Specialist have ever had a patient with it. They tell me that acalabrutinib, which I'll start next week, is sufficient treatment. From what I've read, I'm still uncomfortable with this advice. Does anyone have any information to pass along?

[Davidcara]

I will tell you, from a unscientific view I think they could be right. I had CLL in my small intestine, at least that is what I was told after it was biopsied. Was it CLL causing the inflammation and bleeding, or was the inflammation attracting the CLL. Either way I was getting close to treatment and started ibrutinib. No more inflammation or bleeding. I think it is possible for BTK inhibitors to treat CLL in most places of the body.

[cll2013 in reply to Davidcara]

The Calquence was quick acting on lymph nodes throughout the body, but has not yet shown any improvement in the eyelids. A year ago, I thought the issue of red eyes, itchy lids, and a lot of tearing was related to blocked tear ducts. Turns out that was not the case. The Calquence seems to have helped the tearing and redness in eyes; hoping it will help on the inner lids. It will be the beginning of April before extensive photography and ultrasound of the inner lids is done again and compared to those from this January.

[AussieNeil Partner Administrator]

Every body cell needs access to nutrients from our blood supply, which is how acalabrutinib can reach every CLL cell in the body and inhibit it and cause it to die. I would be very surprised if those remaining CLL cells in your eyelids didn't disappear within months of you starting acalabrutinib.

Neil

[unairdefamille in reply to AussieNeil]

SUCH A GOOD PROSPECT. Thank you Neil!!!!!!!!!

[cll2013 in reply to AussieNeil]

It is now 6 months after starting Calquence/Alcalabrutinib, but it will be early April before extensive photography and ultrasound of the inner lids that will be the telling story.

[unairdefamille]

Hi, what are the symptoms in your lower eyelids? I have a lower eyelid looking red and swollen in parts, losing lashes, and oozing an itchy clear liquid. that can crust in the morning Does it resemble your symptoms in any way? At the moment it is untreated, but I started ACABRUTINIB, so I'm hopeful. Best to you 🙏😊

[cll2013 in reply to unairdefamille]

Area of skin on the outside of lower eyelid is red. Inside lower eyelid is the classic symptom of a "salmon colored area just above the usual red area if you were to pull down your lid. Eyelids were itchy. Eyeball red, usually in the inner corner of the eye.I would recommend seeing an opthamologist SPECIALIST. Mine saw it immediately whereas my regular opthamologist did not see anything unusual. Diagnosis: Conjunctival lesion.

[unairdefamille in reply to cll2013]

Thanks, will see if mine clears with Acabrutinib 🍀🙏

[cll2013 in reply to unairdefamille]

Had similar symptoms. Best to see opthamologist specialist, as mine regular one did not spot it (inner lid has a salmon colored ridge that is a classic symptom).

[lankisterguy Volunteer]

Hi cll2013,

-

I agree with AussieNeil , and even though I have no medical training I have a theory ( if I am wrong, I hope that JigFettler or Jm954 will correct me).

Since blood and lymph fluid flows to every cell in our body (except your cornea) CLL cells will be present near every cell, so if your ALC is high enough and the doctors/pathologists use a test that is sensitvie enough, they will find CLL wherever they test.

-

Ocassionally something happens to cause T-cells and B-cells to accumulate in a specific area. It can be an injury, puncture, infection (viral, bacterial or fungal) or an Autoimmune reaction.

If that happens a higher level of CLL cells might be found in a biopsy. The CLL cells could be innocent drones hanging out with the other leukocytes.

-

An autoimmune condition called Sjogren's syndrome can cause dry eye lids etc. I would expect if a biopsy was taken from the eyelids of someone with Sjogrens, the pathologist could find CLL cells there. Whether the CLL cells caused the problem or are just at the scene of the crime, would be the mystery.

-

I have a skin problem that acts like Psoriasis (another autoimmune condtion) and biopsies show high levels of CLL cells in my dermis, as long as there were high levels in my blood. But the doctors cannot identify the cause. My CLL expert believes it is due to a refractory HHV6a virus. The top dermopathologist at Weill Cornell NY Presbyterian believes I have a early form of CTCL (Cutaneous T-Cell Lymphoma). My dermatologist treats it as Psoriasis, and photo therapy (light box treatment) eliminates the symptoms / side effects. So treating the symptom without knowing the cause works for me.

-

Len

[Sprietgemeente]

Good morning. I had swollen lymphnodes in both eyes under the bottom lids. They did not hurt, but caused my eyes to water. the whites went yellowbecause of broken down small veins. I had biopsies on both sides, and it was diagnosed as part of my mantle cell lymphoma. After two rounds of R-Chop chemo ( this was in 2013 ) eyes were back to normal, nodes gone. Again the

eye specialist had never seen this before. I am pretty sure Acalabrutinib will take care of it. Good luck.

[Sindy74]

I have glaucoma and wet macular and on third month of Acalabrutinib I recently had an appointment at eye clinic. the consultant did a full eye check , been no change .I know that what you have got is different and I wish you well.

[Hidden]

Hello & I hope you are well~May I ask if you had symptoms?

My husband has CLL & in w&w. He gets watery eyes, mostly at night. His lower inner lids seem redder than "normal" to me. He chalks it up to age & me being a worrier. Will not see eye Dr. due to covid (lost his Dad to covid).

Appreciate your time, thank you!

[PSP52 in reply to Hidden]

Hi, I am in W&W. I had cataract surgery for both eyes and retina surgery of my right eye just before the pandemic. For the past two years I see both my opthalmologist and retina specialist twice a year. Both doctors and office staff are extremely conscientious with face protection and every other infection protection protocol. I was nervous about going to these doctors but everything has been fine. As we age we can develop more sensitivity in the eyes especially dry eye. Perhaps some eye drops might help. I use gel eye drops and they are very helpful.

[Hidden in reply to PSP52]

Thank you so much for your reply, I appreciate it~Hope you are well!

Hopefully I can convince him to get checked asap. All of his appts. have been virtual with his specialist & he has a wonderful primary that visited our home in nov. last year. We both have lots of appts. to catch up on after 2 years of this. Hopefully by April he keeps saying. 🤞🤞

Take good care!!

[mrsjsmith in reply to Hidden]

I am seeing my dispensing and then hospital Opthamologists in London this month. It is extremely rare for CLL to infiltrate the eye. I have had treatment on a blocked tear duct and dry eyes. It is most likely something simple. Use your persuasive powers.

Colette

[Hidden in reply to mrsjsmith]

Hi ColetteThank you, will surely try lol~

Be well!!!

[Hidden]

So sorry, read further and saw your prior response to same question, my appologies!