Extranodal Lymphoma

[livinglifewell]

Having just read about one of our members succumbing to an infection following treatment for CLL/SLL manifesting in the person's eyes made me wonder about other extranodal manifestations. Has this happened to you? I was surprised one day when I was rubbing my tired, sore eyes to find the telltale rubbery feeling of a tumor and knew immediately what was happening. I made an appointment for a surgical biopsy and it was followed by a horrendous six weeks of radiation for which I am still paying for the "fallout." How about you? What are your stories?

[Cllcanada Top Poster CURE Hero]

You had a Richter's transformation? To which lymphoma or was the tumour a secondary cancer?

I had an extra nodal transformation in my spine, that grew out to my skin and formed a sarcoma... it was biopsied as DLBCL.

Immediately into treatment for 6 rounds of RCHOP then 30Gy of spinal radiation on L2... in 10 Frames...

7 years have passed.... no return. I'm full of mets of adenocarcinoma, but how related that is anyone's guess..

~chris 🇨🇦

[livinglifewell in reply to Cllcanada]

My extranodal manifestation was the same SLL tissue as the rest of my disease so it wasn't a transformation (as far as I know) just a weird twist. But, having read these stories it'll be on my questions list when I return for a follow-up. It was in 2011. Just prior to this was the removal of neuroendocrine tumors in my abdomen: stomach, gallbladder, lymph nodes. And a year later tumors in my parathyroid that were benign. The fallout from the ocular radiation that I'm dealing with includes cataracts, pseudo cataracts, wet & dry macular degeneration, trichiasis, dry eye, and cornea burning. The wet md is treated with EGFR injections.

[Cllcanada Top Poster CURE Hero in reply to livinglifewell]

Thanks for the details, you have been thought a lot...

This thread shows the diversity of CLL/small lymphocytic lymphoma (SLL) , and why we can't take anything strange for granted.

~chris 🇨🇦

[Eagle5327]

Mine was spread of the CLL itself to my central nervous system. It manifested primarily in the brain lining and behind the retinas, causing seizures, temporary blindness, and permanent eye damage. I'm told my presentation is an extremely rare event for CLL.

I was successfully treated with high-dose cytarabine (an old-line chemo) to my spinal fluid and high-dose ibrutinib. I'm currently in remission again and hope to stay that way.

Coincidentally, yesterday I accompanied another CLL patient in my area to a specialized eye facility at Johns Hopkins University Hospital in Baltimore. She is now diagnosed with B-cell lymphoid infiltration to the tissues surrounding her eyes. The presumption is that it's CLL since she has a number of enlarged facial lymph nodes but it might be MALT, which is a form of marginal zone lymphoma. It doesn't matter which type it might be since both are treated the same: localized injections of methotrexate into the affected conductiva and other nearby tissues. Prospects for her recovery are excellent.

Good luck to you with your own treatment and recovery!

Geoff

[livinglifewell in reply to Eagle5327]

Sounds like you're on the right path. Have the seizures ceased?

[MarySLL in reply to livinglifewell]

I had an extra nodal site in the breast whilst on watch and wait. Same tissue type as my sll. Consulted cll specialist and he recommend to leave. Nothing was done and it went away when I had FCR treatment about 7 years later.

[livinglifewell in reply to MarySLL]

Mary, so did I!! I found a lump in my breast while I was on W&W. It was verified by ultrasound and they used the ultrasound to locate and biopsy it and it turned out to be the SLL. Knowing my diagnosis before the biopsy allowed them to have the correct colored tubes to process the biopsy. It also went away following treatment. It's unnerving to discover lumps where they're not supposed to be. In fact, my lymphoma was discovered following maintenance mammography and ultrasound discovered the multiple enlarged lymph nodes in the axillary which led to more scans and the diagnosis.

[Eagle5327 in reply to livinglifewell]

Hi! My seizures did not stop even after treatment, unfortunately. There was physical damage to my brain lining from the CLL spread. I was having 4-7 seizures per day plus sometimes while sleeping. They were absolutely awful, the worst thing I've ever experienced in my life. A neurologist finally prescribed the right anti-epileptic drug that controlled them. My last seizure was in August 2017 and I was finally able to wean off the anti-epileptic drug about eight months later. Haven't had one since, thank goodness.

CLL can get pretty weird sometimes, right?

But what about you? I'm so sorry you're having such a tough time. The eye is so incredibly sensitive that every trauma causes all kinds of ripple effects. My eye that was most affected by the CLL infiltration has had lots of problems. I am scheduled for my fourth surgery in May, including the biopsy surgery at the beginning of my ordeal about two years ago.

My wish for you -- and myself -- is simple stability and maybe some decent vision. What are your prospects? I think, and I hope, that mine are reasonably good.

We can talk offline if you want. Best of good luck to you!

Geoff

[livinglifewell in reply to Eagle5327]

I get EGFR injections into my one of my macular monthly but am being considered for a gene splicing study.

[Eagle5327 in reply to livinglifewell]

K, sounds good. Hang in there!