CLL Transform to Lymphoma?

[cll2013]

My ophthalmologist specialist is pretty sure I have ocular lymphoma. I will have a biopsy on August 25th.

Does anyone have background on CLL combining with lymphoma?

[lankisterguy Volunteer]

Hi cll2013,-

It may be confusing but CLL is a lymphoma and the diagnosis when CLL cells invade the nerves like the spinal cord or occular nerve could be CNS lymphoma.

Here we present the first case of ocular relapse of CLL with leukemic retinopathy successfully treated with Ibrutinib.

ncbi.nlm.nih.gov/pmc/articl...

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lls.org/central-nervous-sys...

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SNIP: Central nervous system lymphoma is a rare non-Hodgkin lymphoma in which malignant (cancer) cells from lymph tissue form in the brain and/or spinal cord (primary CNS) or spread from other parts of the body to the brain and/or spinal cord (secondary CNS). Because the eye is so close to the brain, primary CNS lymphoma can also start in the eye (called ocular lymphoma). The cancer can also involve the spinal fluid that bathes the spinal cord and brain. This is called leptomeningeal lymphoma.

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I hope you are being seen at a top blood cancer research hospital, since the diagnosis and treatment of this is challenging to the world class experts. Hospitals like MD Anderson or Weill Cornell NY Presbyterian have the deep bench of expert pathologists, lymphoma experts, and opthamologists that can sort out if the cancer cells are CLL, DLBCL or T-Cell lymphoma.

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When my CLL expert suspected I had optical nerve involvement, I saw a series of 4 different doctors including a neuro-opthamologist - each specializing in a different area. They eventually concluded that I did not need a spinal tap or biopsy to exclude occular lymphoma.

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I hope your biopsy comes back negative, or a treatable indolent form.

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Len

[cll2013 in reply to lankisterguy]

Thank you for your input to me. I see CLL Specialist Dr. Malek at the University of Michigan as well as a hematology-oncologist at Beaumont Hospital. I decided to call on Monday to appraise them of the recent event and see what comes next. Heavy on my mind as my husband is on dialysis and needs surgery to remove his gallbladder but the surgeon wants to wait to see if he can get off dialysis.

[Ashwas]

In 2011, I had a small eruption below the left eye.It was slowly getting bigger. Initially, the doctor after examining did not take it seriously.

Suddenly, it grew bigger to 1 cm dia ball and I had a MRI and Biopsy.

The doctor suspected Hodkins jumphoma. They started treatment with rituximab and fludarabin.

After 2 cycles, it became so enhanced and the onco recommeded extraction as the tumour was floating inside skin.

The extracted tissue biopsy indicated as related to CLL and treatment stopped after 3 cycles.

Now on wait and watch

[cll2013 in reply to Ashwas]

It seems that CLL in the eyes is not so rare after all.

[Railmaster]

My ocular lymphoma was diagnosed over 6 years ago. I am 64. There are many different types and thankfully most are indolent. Your biopsy results will determine the way forward.

My biopsy confirmed a conjunctival lymphoma (MALT) comprising mixed phenotype Marginal Zone Lymphoma (MZL) and Chronic Lymphocytic Leukaemia (CLL) cells.

Following the biopsy, I had both head & body scans which were clear and I was initially treated with Interferon eye drops. But, I have had no treatment for years and remain on watch & wait, for both the lymphoma and the systemic CLL ( diagnosed nearly 16 years ago) All in all, I’m fit & healthy and the lymphoma causes no problems.

Hope this helps. Try mot to worry too much, once you have the biopsy results , things will become much clearer.

[cll2013]

Many thanks for responding. Getting informed is half the battle to handling the roller coaster of CLL.