tp53 mutation

[Fortheloveoffarming]

Hi All, my dad has been diagnosed with CLL and has just had it confirmed that he has the TP53 mutation/deletion. He is stable at the moment and is currently on watch & wait. His consultant has said if and when he starts treatment it will be for life or until it isn’t effective. I’ve read lots that say that tp53 is associated with poorer prognosis. Of course I’m now worrying! Can I ask with new treatments is this still the case please? Thank you in advance x

[AussieNeil Partner Administrator]

Hi Fortheloveoffarming, and welcome to our community in your role as carer for your Dad. You'll find that we have quite a few carer members looking after a parent, partner, etc., so other members understand what you are going through.

I gather you already appreciate that there has been a revolution in CLL treatments, so yes, you need to ignore what you find about TP53 survival times unless they relate to patients who have only been treated with one of the newer targeted therapies. Older 'chemo' treatments relied on a functional TP53 gene to work, whereas the newer, targeted therapies kill CLL cells differently.

Your Dad's consultant has effectively stated that he will be treated with a BTKi maintenance targeted therapy drug (currently acalabrutinib, ibrutinib or zanubrutinib), should your Dad ever need treatment. A third of those diagnosed never do - which is more likely if they are older. (You won't easily find up to date information via general on-line searches on this topic, but there are regular updates on how well those with mutated TP53 do on the newer treatments in posts to our community. Clinical trial data is still being accrued to determine how long it is until 'it isn't effective' - if that actually happens.)

Neil

[spi3 in reply to AussieNeil]

Neil is absolutely spot on - I call these pills my husband's Angel warrior pills and am excited that my hubby is doing terrific on them (for he is TP53 muted)

[Walkingtall62]

Hi to Fortheloveoffarming. Pleased you have found this site already. I have found it to be very supportive no matter the question. If a feeling or question is important to you/your dad, it’s always worth asking. There are very knowledgeable people here from around the world. Wishing your dad all the best

[Shepherd777]

My wife was diagnosed 2015 with 17P and TP53 deletion. It is almost nine years now and her CLL has been treated with the newer drugs that are very effective. What once was considered the worse scenario for CLL, TP53 and 17P is now on near equal par with all the other CLL cases.

It is often stated that with the advancements in CLL treatment one will probably die with CLL, but not from CLL.

CLL is somewhat like diabetes in that there is no cure yet, but it is treatable. Many like my wife are able to get off of treatment for 3 or 4 years until the CLL becomes aggressive again and then retreat for a year and take another vacation from meds.

Stay away from Google it is behind the times by 5 to 10 years. You are in the right site with knowledgeable people that can direct you to some great hospitals, doctors, (CLL specialists) and meds that are most encouraging.

[thompsonellen2]

I have the TP53 mutation and also other mutations and prognostic markers, e.g. 17p, unmutated, that are less than ideal. Everyone is different and you can't assume his path. As AussieNeil said he may never need treatment. I did 6 months after diagnosis at 47. That was 8 years ago and I am going to adult figure skating camp and jumping and spinning for 3 days this week. The good news with the newer treatments he will have any options that can be taken sequentially if he needs them. He will be on them for life, but it's not that big a deal to take a few pills in the morning.

I am mentioning this side of the story because if he starts feeling unwell he could need treatment sooner than others and you should know he will be fine and feel a lot better if he has to take meds. In the meantime, he should live his life and you should try not to worry so much now (I know this is hard - my son was 16 when this happened).

[gardening-girl in reply to thompsonellen2]

⛸️Jumping and Spinning!⛸️ 👏🏽 I'm clapping for you Ellen!

[234me]

Hi there, I got the 3 so called bad markers, PT53mutatetd/17 P deletion/IGHV unmutated and the new treatments as others have said work wonderful. But, keeping in mind everyone reacts differently and responds differently. I was treated the first time with the old stuff, FCR in 2016. They don't offer that kind of treatment anymore for us people with PT53. I've been on acalabrutinib and now zanubrutinib. I'm doing great in having little side effects from the treatment.

And like others have said, your father may never need treatment.

Good luck and this site is just wonderful for support and knowledge.

[MSUdawgMom]

I was diagnosed in 2013 with 17p/TP53/unmutated. I’ve had 2 treatment regimens. Started Ibrutinib in 2014 & remained on it for 6 years (with NO side effects) until I developed resistance. In 2020, I was switched to O & V, 2 year treatment. I did not reach uMRD, but was in clinical remission. I’ve been “med free” since August 2022.