CLL comeback

[Ricotta]

Hi everyone! I haven't been on the forum for 4 years.

When my white blood cells were 100. I was diagnosed with chromosomal breaks and unmutated status. I received ibrutinib as my first therapy and was referred for a hematopoietic cell transplant. In 2021 I got remission and was happy.

But in 2024 I started having b symptoms and yesterday I got the answer that I have 0.8% residual disease in my blood. I am broken.

Does anyone have the same experience?

[AussieNeil Partner Administrator]

Welcome back, though I'm sorry for the circumstances of your return.

I'd be less worried about the residual disease result than the recurrence of B symptoms, provided you've had your spleen and nodes checked for enlargement and your blood counts are good. You might be seeing your CLL/SLL return with an SLL expression. The reason I say this, is that a low percentage of circulating B cells are found in those with CLL who have undergone spontaneous regression. See ashpublications.org/blood/a...

Have you investigated possible other reasons for your B symptoms?

Neil

[Ricotta in reply to AussieNeil]

Neil, thank you so much for your reply! It got me thinking.

I have had many symptoms every month for the last year. Headache, low grade fever, body aches, weakness. Had a few night sweats. The blood is normal. And now I have enlarged lymph nodes and spleen. Tests have shown that I have active EBV. DNA-EBV 65*

Tests are still ongoing, I have had a PET scan and possibly a lymph node biopsy. I will hope for a good outcome.

[LeoPa in reply to Ricotta]

Epstein Barr virus?

[Ricotta in reply to LeoPa]

yes, this virus

[LeoPa in reply to Ricotta]

I have high levels of antibodies against it too. Not active, but it had me sometime in the past. I never knew. Who knows whether it can have something to do with CLL developing. Quite possible I think.