The Eye as a Clue to CLL: Rare according to Yale

[Guest guest]

We are looking for anyone w/experience on treatment as the

doctors at Yale say this is a very unusual case and we have

no clue as to who we can go to for a second opinion. We

want to reach out to see if there are others in this

situation (and understand what the situation is!!)

BACKGROUND

Our close family friend (Gene, 54 yr old, " single " dad,

feels fine, no night sweats/weight loss/tiredness, etc) was

diagnosed with CLL in December 2010.

This was ultimately discovered through his eye. Gene had 2

years of redness, discoloration, pain and vision " dots " in

his eye (s)..and saw the eye & regular doctor quite a few

times. He was treated with prednisone but the condition

always came back and at time, was quite painful. To this

day, Gene has no other symptoms (a little lymph swelling but

nothing extra-ordinary).

Finally, he went to Yale because he was getting nowhere with

local yokels and saw Dr. Huang, Associate Professor of

Ophthalmology and Visual Science; Residency Program

Director; Director, Clinical Trials and Translational

Research; Director, Ocular Immunology and Uveitis)for the

eyes.

With just one look, Huang @ Yale told Gene something was up

and wanted to do a biopsy (but he needed to get his blood

pressure down).

So it was back to the PCP and she did a WBC (~48,000). Gene

was sent directly to a local yokel oncologist. The local

oncologist didn't think eye was related to CLL and put him

on watch and wait.

Gene went back to Yale to get another opinion from Dr.

Dennis , Professor of Medicine (Hematology and

Oncology); Director, Stem Cell Transplant Program; Co-

Director, LLM Program Medical Oncology (Cancer Treatments).

They took more blood (he's been there 2x); we are requesting

the results but felt Gene should be on watch and

wait.

On a parallel path, the tissue of the outer eye was biopsied

by Huong with the following results (these are the only

actual CLL results we've seen):

CD20+

CD38+

CD5+

CD23 (variably pos)

CD3-

CD4-

CD8-

Flow cytomertic mom Bcell - 70% of nucleated cells in left eye;

10% in right eye.

dim kappa - restricted

CD 19+

CD20+

CD5+

CD10-

CD43-

FMC7-dimly +

CD11-dimly+

CD38-100% positive

CD38 expression in CLL is associated w/immature phenotype

(unmutated IgG heavy chain)

FISH-Neg

Drs. /Huang finally consulted and Gene was contacted

last night while he was working in the garden. They want

him to start FCR on June 15 and in addition, will " shoot his

eye up with Rituxin " ). The feeling is that an ocular biopsy

is too dangerous.

At Yale, they keep saying this is really rare. Is it? Who

should we talk to? Who is studying this or wants to study

this???

Gene obviously doesn't want to go blind and has a young teen

to take care of.

Thanks in advance for your warmth and help. I have been

reading the posts from this group for the past few months

and it really is great.

MattBethMad

[Guest guest]

Personally, I would go to Boston and get another opinion. I

have a co-worker, Manchester, Ct, that couldn't find anyone

to treat her daughter, and had extraordinary results in

Boston. I think it was the Mass Eye clinic. If you have an

interest, I'll find out exactly.

Wish you the best.

On Mon, Jun 6, 2011 at 10:17 PM, mattbethmad wrote:

/message/15285

[Guest guest]

Here is a site I found on the eye and CLL.

http://www.eyecancer.com/Patient/Condition.aspx?nID=49 & Category=Infiltrative+Int\

raocular+Tumors & Condition=Chronic+Lymphocytic+Leukemia

or http://tinyurl.com/42wxfl4

I would suggest seeing a CLL Specialist along with the

Opthamalogist. This is most likely very rare for Yale, but

not for clinics that specialize in CLL.

JLOU

On Mon, Jun 6, 2011 at 10:17 PM, mattbethmad wrote:

/message/15285

[Guest guest]

Hi, My layman's guess is that the CLL cells are migrating

to the eye for an uncommon reason, perhaps in response to a

stimulating antigen. So I would inquire of the experts if

antibiotic therapy of the eye is worth trying. The model

for this is MALT an indolent b-cell lymphoma that is

sometimes driven by h-pylori infection, which can regress

when treated with antibiotics.

All the best in your search.

Karl

[Guest guest]

I had some trouble in the past had to have a stent put in my

eye the Dr at the eye clinic said he's seen a lot of

patients with a blocked tear duct that had cll at Mass

General in boston it was very painful

diagnosed cll in 2002

[Guest guest]

This is in reply to MattBethMad and the involvement of CLL

and eye pathology. So sorry to hear about your eyes. Eye

pain/problems are the worst! I have had CLL six years. My

eyes became very red and painful three years ago. I was Dx-

ed with scleritis, pseudo-tumor, chronic progressive

external ophthalmoplegia, and more. I saw ten, yes, ten

specialists! No treatment worked...... at all. Treatments

being standard eye medications, prednisone, antibiotics, eye

drops of every stripe....

The pathology of my eyes continued to worsen and my monster

red eyes began to become paralyzed in the sockets.

Eventually the eyes ceased to move at all; the eyeballs were

literally frozen in the sockets. I lost my vision and

everything was simply a big blur. I could see only with

prisms in my glasses. I had never even worn glasses prior

to this. I could not even take photographs for my eyes

looked so painful and bad. No one could help me, no one had

seen anything like it or come up with an explanation. And,

most everyone said it was NOT related to the CLL. I did not

need treatment for the CLL, however, in desperation, someone

said, you might as well try Rituxan. It might have been

Byrd, or my local oncologist, or even me, I can't

remember anymore. To make a long story short no one really

thought Rituxan would help, but I was desperate. So, I did

four standard treatments in a period of a month. And, over

the next few months, like the biggest miracle of my life, my

eyes began to resolve! I do not wear glasses and for the

first time in three long years my eyes are white and I can

see! I did not need the Rituxan for CLL, my numbers were

stable, with the exception of my neutrophils which were very

bad. For me Rituxan was unreal in how it healed me. I

would suggest you give it a try. Good luck to you and I

hope your story turns out well!

Simpson Cincinnati, Ohio JSimpson@...

feel free to contact me if you need help. I think the

Rituxan might help as a single agent and I would try that

before you add the big chemo guns to it.

[Guest guest]

provides a powerful story ... Thank you, !

Just to clarify , I think if you otherwise don't require

therapy, and the eye problem isn't yet acute, antibiotic

therapy seems a plausible try - even if a long shot - given

its safety.

But treating the CLL could well be what's best to protect

his eyes.

As always the decision should come from the experts he

consults ... but it can't do harm to ask the question.

All the best,

Karl

wrote:

/message/15296

[Guest guest]

It is extremely rare for CLL to involve the eye. What is

often called occular involvement is actually lacrimal gland

involvement. The one thing regarding this case is whether

the CLL that is in the eye is just a result of some bleeding

into the eye and the CLL cells ending up there as a result.

I have never heard of intra-occular Rituxan being done.

Since there are no other immune cells in the vitreous, it is

unclear whether Rituxan would have any efficacy in this

situation.

My recommendation is to consult with a CLL expert and let

them connect you with a good ophthomologist that they trust.

Rick Furman, MD

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