Hi all,
I'm a CLL and ITP patient and have had many different treatments in the past number of years. Following a recent CT scan and an increase in the size of my lymph nodes, my consultant is proposing that I start the new drug Ibrutinib.
My history of treatments hasn't always been successful and I have been hospitalised several times due to bad reactions and/or infections, so naturally I'm very cautious and concerned about starting this new drug.
As far as I am aware, Ibrutinib is for people whose CLL has relapsed after treatment and who have certain genetic changes (17p deletion, where some genes are missing) in their lymphoma cells that make their condition harder to treat.
I would love to hear from other members who have experienced this new drug, or perhaps who know someone who is going through treatment with it. I've read and re-read the clinical information but some human experience would be much welcomed.
Thanks in advance.
Hi Jimimajimbob
I have been on Ibrutinib since February last year. I was a relapsed patient with no deletions, as far as I know. I'd had just one series of Chlorambucil / predisnone chemo back in 2014.
Ibrutinib reduced my enlarged spleen and lymph nodes back to a normal size in 6 months, mainly eliminated persistent diahhrea with some occasional recurrence, and left me generally feeling well and energetic. I do still experience the normal aches and pains of a 70+ male. I have some skin problems continuing from pre treatment times and currently have a heart monitor implant to monitor an irregular heart beat. This may be from Ibrutinib but my father suffered heart attacks from 64 until his final one at age 89.
I know that I am extremely lucky that the NHS funded this treatment and that the treatment arrived "just in time" for me.
I certainly hope that you will find Ibrutinib equally efficacious and live a long and happy life.
Regards
David
Thanks for your encouraging news. Keep well
Jim