I just read that more than 80% of CLL patients have this issue... I guess many docs either don't test for it or they don't tell us or they don't understand enough themselves about it, so why mention it. TP53 deals with the body's inability to suppress cancer tumor growths.

The best things anyone can do is be positive, exercise daily to keep your lymph system moving and not clogging up and to eat good whole food and not junk food. Let's face it doctors are merely trying their best to help individuals but there is no cookie cutter cure or path. Each of us needs to take responsibility for our own health.

We need to encourage one another and share possibilities. It beats being a "nay sayer". There is no cookie cutter cure. We need to encourage one another. Doing things that aren't harmful like watching ones diet and exposure to chemicals is plain common sense.

There are many who have beaten the odds and you too can be one of those. Don't give up! Don't let negative comments rule your health. Be positive! Believe you will beat the negative words from nay sayers. You can!

Suzanne, may I ask if your doctor specializes in CLL or are they a Hematology/Oncology Generalist...meaning, they work with a broader range of cancers? A CLL specialist has a patient load of mainly CLL/SLL and is more likely to be current on the daily evolution of treatment options..even for the most difficult of prognistic cases. There are new treatments being developed with seeing promising results. If you do not have a CLL Specialist on board, I highly recommend seeking a second opinion and getting one on your care team! They will be able to walk you through your questions, help you understand your specific markers along with possible paths of treatment. There are also trials they may be able to involve you in for your specific situation. Regardless, please try not to google or seek information on any sites other than verified sources of CLL/Cancer specialization. Much of what is out on the general web is "outdated". That being said, while your marker(s) may be more challenging, you still have a story to tell and the right care team will be the best resources to help you navigate that so BEFORE AGREEING TO ANY TREATMENT, BE SURE TO CONSULT A SPECIALIST! For today, please take self care and don't let someone elses story be the one you paint for yourself in your mind...

Very well stated Iolene:):) As you mentioned there is no cookie cutter cure. Taking care of our entire system by eating healthy, resting when we need to, daily movement of our lymphatic system, positive mindset and advocating for ourselves when we see any doctor is a win win. The choice is ours and ours alone to make changes. Baby steps as they say:):) Thanks for your positive post and have a super duper rest of your day!:):):)

When I look up Ash conference on YouTube, that's where you can get most answers to this blood cancer treatments. These conferences are a meeting of blood cancer doctors from prominent research hospitals. There's a promising drug for TP53 on clinical trials. The drug is called Magrolimab. There may be others too. If your hospital does not conduct clinical trials, ask your doctor for a referral. Usually the drug companies pays for this drug trials. Your insurance will only pay for the cares you receive during the trials. Some doctors will let you know about them, some don't. Do your own research and know where the trials are being done. Be your own or your loved one advocate. Go to this trials, you never know you might be one of the lucky ones. Blood cancers are really terrible. Let's try untill we can't try no more. Never back down, never give up!

Sorry to see you have the TP53 mutation. I’ve been doing a lot of research on CLL/SLL since my diagnosis in 2021 and this mutation is one if the markers with a less favourable prognosis along with 11q , 17q and unmutated IGHV status. However new medications currently used and a few currently on trial are proving to be very effective in treating individuals harbouring these markers. We all know this illness cannot be cured and it becomes part of our daily life but science is getting better at managing it to help us have good quality of life. I hope you will be able to benefit from these new agents and upcoming ones. Wish you the best and God bless you!