My dad has CLL with TP53 mutation

[Ornate2001]

As i am writing this im very frightened

And i need someone with similar condition

My dad was diagnosed back in 2019

With CLL he did about 3 sessions of chemotherapy and went back to remission

Lately in January he noticed some lymph nodes in his neck as well as in his face

After examination he discovered that Tp53 was positive with deletion (17p13)

Anyone in similar case or someone with information will bee so helpful to meet thank uu

[Jm954 Administrator]

Hi and welcome here where I hope you will find support and information.

Try not to worry too much, I don't know which country you're in but your dad is extremely unlikely to be offered Chemotherapy again as it doesn't work well with 17p deletion. The good news is that there is a range of targeted, new treatments that work very well with 17p del CLL. The particular one that will suit him best will depend on a variety of factors including any other comorbidities that he has.

The usual options are a BTI inhibitor such as Ibrutinib, Acalabrutinib or Zanubrutinib and the other class of drug is the BCL2 inhibitor Venetoclax with or without Rituximab. The BTKi's are ongoing treatment and the Venetoclax is usually fixed duration of 2 years.

There's obviously more to this than I've outlined but generally, these treatments are very well tolerated and most people lead a normal life whilst taking them.

Have a look at the Pinned Posts to the right hand side of the screen, there's lots of useful information there for new members. Here's a link to the list

healthunlocked.com/cllsuppo...

Let us know how he is.

Jackie

[SofiaDeo]

I got diagnosed in 2011 with a complex karyotype, meaning multiple mutations. I also have a del 17p gene on one allele of my DNA, as well as a TP53 mutation.

My variant gets beaten down, grows back, I have to beat it down again. Multiple treatments of various things. Some worked, some didn't, there can be side effects we don't want to deal with even if the drug is working. Us 17p del folk may have more problems beating our variants down than others, but we now have many more options compared to 2011!

[spi3 in reply to SofiaDeo]

As my husband who is also TP53 muted and 17p depleted- these mentioned treatments are miracles treatments!

[LeoPa]

Availability of treatments depends from where you live.

[Ashlar677]

I to am Tp53 positive with deletion (17p13) from 2017, I was on W & W until 2019 at which time I started treatment. I tried all the things, I read about Green Tea, eating different, trying Turmeric in my diet..None of that did any thing to help, so don't waste you money, unless you just like green tea. Once I started treatment the swelling in my neck, face, under arms, and spleen went down. I was treated for 6 weeks with IVs and steroids then placed on ibrutinib. In 2023, I had hip replacement I was taken of meds for for 4 or 5 weeks. Afterwards my numbers stayed good, my doctor decided we would try staying off meds for a few months. My Doctor presented my case to a Mayo Clinic review team, they supported leaving me off ibrutinib, the team thought I would not need treatment for 4 or 5 years. But in my clinic I have another doctor that said after 4 weeks post surgery I should be back on meds. ----Boy am I confused---. Anyway, I am back on ibrutinib and except for the tiredness I am doing good. My doctor and the review team believes something else will get me before CLL will--I hope their RIGHT. In my case the Doctor said it was like high blood pressure I would be on meds for a long time, unless meds have to be changed should the CLL progress. I have read that doctor don't recommend using ibrutinib much any more, there are newer and better meds out now.

One thing I would tell you is keep your dental care up!!!, I have a good dentist and he keep on my teeth good, when I first started treatment my mouth would be sore for no reason. I guess I had to get my body used to the meds. The other thing I would say is have vitamin "A" checked. I have read the lack of vitamin contributes to the development of CLL. I had my checked and it was LOW, needless to say I started taking vitamin A, with doctors approval, it took a while to get my levels up. I live in the South, USA and I drink milk, you would think I would get plenty of vitamin A, not the case. Sorry for the rambling on, just information I wanted to share. One never knows what might help.

[AussieNeil Partner Administrator in reply to Ashlar677]

Thanks for sharing your quite relevant experiences. I suspect though, that you meant vitamin D, not A

[Ashlar677 in reply to AussieNeil]

Sorry, Yes vitamin D, I typed that before I had my coffee this morning. Thanks

[AnneHill in reply to Ashlar677]

I was told I had low vitamin B12. That made my tongue sore. I needed jabs and I will have more. We dont always absorb it. Its worth checking, Anne uk

[Sojomama13]

Hi,

I have the same markers as your Dad. I am on a clinical trial treatment, AVO (Acalabrutinib. Venetoclax and Obinutuzumab). Due to my “unfavorable”markers, I am not a candidate for chemo.

Please rest assured, those “unfavorable” markers do mean that folks like me and your Dad have a quicker time to be treated. With the development of these very awesome, non-chemo drugs, “unfavorable” markers no longer are synonymous with unfavorable outcomes. That is a huge development. Yippity dippity Science!!!

I was diagnosed when my 3 children were much younger. My Oldest daughter will be starting her 3rd year of college and my son is starting college in September.

My best advice is to see a CLL Specialist. If you are too far away, zoom is always an option. There have been many developments in blood cancers in recent years. I wholeheartedly believe there will be even more coming. I’m thinking that we may see this treated much like diabetes in the future.

Forever Hopeful,

Sandy

[Motorman]

Not much to add, just to say I never knew there are so many of us (relatively). Makes me feel less alone. TP53 17p deleted and on W&W for 5 years and still no treatment. MM

[thompsonellen2]

TP53 17p deleted and on treatment 6 month after dx. On 4th treatment plan. Chemo doesn't work with us so not sure why they did that. Like everyone else said, see a CLL specialist and if you are in the US, you'd have many pill-based choices that let you take the pills and live your life. Not sure what your options are where you live, but do know there are options now that can give longer term remissions which weren't available even 10 years ago. Good luck!

[Adlucy]

Hello there. I was shocked when I was diagnosed in 2020 although my GP had suspected it in 2019 then even more shocked after I got the genetic testing results and learned that I was TP53 mutated with 13 q deletion. I felt worse when I looked it up and learned that TP53 is the protector of the genome. My consultant told me that chemotherapy did not work on people with my markers but he was reassuring and said there were new treatments coming along. That was in 2020. He warned me that although CLL was regarded as indolent wth my markers I might need treatment earlier. It was indolent at first then suddenly it was not with my lymphocytes doubling in under six months. This was the case in June/July time last year when I started treatment on Venetoclax and Obinutizimab which NICE had approved for first time treatment earlier that year, I think for people with my markers. Well, talk about a sledgehammer cracking a nut, my white blood cells went down with a bang immediately. I have tolerated the treatment well and currently I am in haematological remission.

I hope this is reassuring and I wish you all well.