My mum was diagnosed in 2008. Fast forward to now, she is currently on Ibrutinib which has been a journey in itself. She has been on it now for nearly 2 years.
So in 2020/2021 she developed SCC on her nose. That was treated with RT. And now it has been found on her kidney. For that she is on W&W.
Is this common, is this a side effect of CLL or the treatment? It's a coincidence that this has happened to her whilst taking Ibrutinib?
We have an appointment with her team to discuss beg of May but would really appreciate some advice/other peoples experience.
Thank you,
Mel
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mouseygirl
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Per, with my emphasis, en.wikipedia.org/wiki/Cytot..."A cytotoxic T cell (also known as TC, cytotoxic T lymphocyte, CTL, T-killer cell, cytolytic T cell, CD8+ T-cell or killer T cell) is a T lymphocyte (a type of white blood cell) that kills cancer cells, cells that are infected by intracellular pathogens (such as viruses or bacteria), or cells that are damaged in other ways."
CLL has a reputation for driving T cells into exhaustion, so they are less able to perform their cancer cell surveillance. That's probably why CLL unfortunately brings with it a higher risk of secondary cancers. Our greatest secondary cancer risk is for skin cancers - up to 8 times the normal risk. Some CLL treatments may slightly reduce T cells as well as B cells, for example FCR and venetoclax treatments. However, when CLL treatments reduce the CLL tumour burden, they also remove the cause of T cell exhaustion, so T cell cancer surveillance should improve. There was some research that concluded that ibrutinib considerably improved T cell function, but it hasn't been independently confirmed to my knowledge.
So in answer to your question, your Mum's CLL may have been a contributing factor for her developing skin cancer and ibrutinib might actually be beneficial in helping her stay in watch and wait. That she's in treatment for her CLL is a bonus in any case.
Hi Neil. Just to say a huge thanks for your posts. They are invaluable to me, and always give me positivity on my new journey with CLL, You’re a star!!!
Hello Mouseygirl, Neil has helped explain why we CLLers are prone to secondary cancers in such a clear way that I hope helps you and your precious mother as you gear up for your May appointment.
It also serves as a reminder to us all to be vigilant when out in the sun and shade to protect our skin. Take care, Carolyn
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