4 weeks on Ibrutinib blood work has shown P53 Mutation

[mouseygirl]

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

[AussieNeil Partner Administrator]

Ibrutinib does work with TP53 mutated CLL, but perhaps just not as long. Venetoclax and Idelalisib could still work then.

[mouseygirl in reply to AussieNeil]

Thank you so much for the reply

[Hidden]

i am p17 deleted and tp53 mutated. I am on Imbruvica. one doctor thought it stopped working and the other thought not.

[mouseygirl in reply to Hidden]

Can I ask how long you have been on it? Thank you

[Hidden in reply to mouseygirl]

16 months

[81ue]

I lasted 17 months on imbruvica with TP53 mutation and 17p deleted. Now I'm on venetoclax

[mouseygirl in reply to 81ue]

Thank you.

[Yvbb]

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).

Wish you and your mom good care and good luck🍀.

Yvonne

[mouseygirl in reply to Yvbb]

Thank you Yvonne. Really helpful and reassuring.

[mrsjsmith in reply to mouseygirl]

Over two years for me also on those same mutations. At one point they thought I was resistant but it was a false alarm !

Colette

[mouseygirl in reply to mrsjsmith]

Thank you Colette, these things are so good to know.

[Hidden]

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!

[mouseygirl in reply to Hidden]

Thank you Madlily. Heres's to keeping your curly hair. Cheers.

[Green611]

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

All the best for you’re Mum

[AussieNeil Partner Administrator in reply to Green611]

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.

Neil

[Green611 in reply to AussieNeil]

Thanks for info, I’ve looked at my last results properly and the lymphocytes were 58 with a white cell count of 61 so not much difference yet

[mouseygirl in reply to AussieNeil]

Thank you again Neil.

[mouseygirl in reply to Green611]

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.

Wishing you all the best too and thank you.

[mja511]

I'm p17 and tp53 mutated - I've been on Imbruvica for 4 years 8 months. I'm 63 now.

[mouseygirl in reply to mja511]

That's great to hear. Thank you for your reply.

[morepork]

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.

[mouseygirl in reply to morepork]

This is what I have heard too. It threw me a little yesterday but I have been reassured. Thank you and wishing you all the best.

[CocoMolly]

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.

[mouseygirl in reply to CocoMolly]

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