CLL treatment and Lymphoma detected.

[AM0000]

Hi my mom just started treatment for her CLL 4 months ago. Her doc put her on Brukinsa (Zanubrutinib). After her 1 month and 3 month follow-up, her WBC are coming down and she is regaining her wight. Prior t this, she was on W&W for about 14 years and thought to have had CLL likely for about 16 years. It was very slow progressing CLL but in the last year sped up a bit and dramatic weight loss.

Before she started treatment, she noticed bumps forming in her lower inner eyelid. She had them removed and biopsied after starting treatment. The opthmologist has called back and spoke to her and given my mom is the not the best communicator in English, not sure if I am getting all the information and waiting for him to call me back.

Turns out the biopsy detected lymphoma. I'm wondering if this is the CLL or another type of lymphoma? My mom reminded him that she is a CLL patient and started treatment (although she didn't calrify that she sarted treatement after theese bumps in her eyse formed)

He mentioned he would had to tlak to her oncologist but she may have to change her treatment?? This is so upsetting because my mom has been tolerating Zanubrutinib quite well. I'm thinking thinking her Opthomologist doesn't have all the information and is thinking the Zanubrutinib has something to do with this.

Does anyone have thoughts on what this could be or has anyone gone through a similar experience?

Thank you in advance!

[SofiaDeo]

If those cells from the biopsy are lymphocytes, they likely are a CLL infiltration. CLL *IS* a type of lymphoma. A Flow Cytometry test would verify if whatever this is, is the same as her CLL.

I recently had a colonoscopy, and "if any abnormalities are found & they are lymphocytes, have the gastroenterologist do Flow Cytometry on it to verify it matches your CLL" is what my specialist said, so I am confident my recommendation is what at least some specialists would do.

Please note that you don't want to just be checking her WBC. That's not what is monitored. *Lymphocytes* going down, with *neutrophils* NOT going down, is what you are watching for. It's possible for neutrophils to drop dangerously low, and this would show as part of the total WBC dropping. Look at the subsets in the differential section of the Complete Blood Count, not the WBC itself.

[AM0000 in reply to SofiaDeo]

Thank you so much! This all very helpful!!

[Spark_Plug]

I don't think you're going to get much until you get the full story from the doctor themselves.

I know it's frustrating but I'm sure you want to give your mother the best.

[AM0000 in reply to Spark_Plug]

Thank you! Yes, for sure. I've emailed her CLL specialist!

[LeoPa]

The ophthalmologist probably knows zip about CLL. He should be more careful about saying things like"she may have to change her treatment". Especially before talking to the haemato-oncologist.