Hello and thanks in advance to anyone that replies to this.
My mum is 70 and was diagnosed in 2008. She has just had a follow up phone call with the DR who has said that 4 weeks in on Ibrutinib she looks to be doing well. Minimal side effects, blood stablilizing etc. However she has shown to have P53 mutation. The DR said that this could result in her becoming resistant to the drug within a shorter time frame than those without. It feels like yet another hurdle.
Has anyone had this experience and is currently on Ibrutinib? Or has anyone tried another drug? The DR has said there will be options.
Thank you
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mouseygirl
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38 months on Ibrutinib of which 12 months in a combi treatment with Venetoclax (trial, started in Sept 2017). Stabile disease, mrd <3, p53, without 17 del. IGHV mutated 13q del (dx in 2000).
Thank you Colette, these things are so good to know.
I'm 71, have the tp 53 mutation and am on Ibrutinib. My Oncogist has always said that if for any reason it was necessary to change my Ibrutinib that there are other options and new possibilities being developed all the time. The only real side effect has been that I now have curly hair and I would be sorry to lose that!
Hello, I’m still on 6 month W&W I would be interested to know what your Mum’s White cell count was when she was put on medication, I’m currently at 58 white cell count with a blood test soon
With CLL, the tumour burden is best measured by the lymphocyte count, not the white cell count. The treatment guidelines don't specify a lymphocyte count at which to start treatment, but one of the indicators that treatment may be necessary, is a lymphocyte doubling time of under 6 months. The highest lymphocyte count I've heard of was 1,400. We have members in watch and wait with absolute lymphocyte counts of over 400.
It's all in the numbers. My mum had had a five year remission and is still feeling well despite having to go on treatment now. They were definitely looking at the white count too but I cant remember what it was, but things changed very gradually.
Hi , I also have TP 53,17p- and have been on Ibrutinib around 3 years now.
So far so very good . My ALC reached over 250 each month after many years of W& W, and I could have stayed untreated as no problems. But the chance to go onto free Ibrutinib came up here( in NZ) , over a very short time-frame from the manufacturers, so my haematologist and I grabbed the opportunity. As someone else has said there are now other opportunities like Venetoclax if resistance develops.
I have been on Ibrutinib for just over 2 years,I also have a P53 mutation and P17 gene deletion. As of today all my bloods are perfect, and I have no side effects,I am 64 years old and was diagnosed in 2007,I wish your Mum well and have confidence in the current treatments, they are improving every day. One thing I have found is meditation and gentle exercises like Tai Che really help. also maintain a healthy diet, make sure You avoid constipation as I found it prevents the previous days medication exiting your body and you get very dizzy and nauseous from the buildup of toxins.Aside from that life is beautiful.
Hi CocoMolly, what a lovely message and thank you for taking the time to share your experience. It really helps. I will pass this valuable info on to my mum and may your life continue to be beautiful
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