confused about survival

[Sunshineatleast]

I just watched this video

healthunlocked.com/cllsuppo...

I was and then all I heard was survival chances. I was always told that CLL will not kill me but I will die with it. Luckily, I am still on Watch and wait but this shocked me. Of course that’s what got my attention !

[lankisterguy Administrator Volunteer]

Hi Sunshineatleast,

Since I wrote that posting 7 years ago and updated it several times, I'm unclear what it is about defining when treatment is needed is upsetting you.

The post and all recent studies continue to confirm that early treatmenofof CLL (as is done for most solid cancers) will not improve our survival, so watch & wait is still the standard of care.

In other posts and studies show that our weakened immune system puts us at higher risk of infection- especially in our lungs, and higher risk of 2nd cancers (this means that other things might kill us before CLL does). However close attention to getting early treatment for both infections and 2nd cancers will extend our lives to match other people with normal immune systems.

Please LMK if you have questions, and I will try to help.

Len

[wizzard166]

I'm the fourth in a row in my family with CLL, so you might say I have some insight into survival with it. Me, My Father, his Mother, and her Father. My Grandmother went to 93 and my Father unfortunately 71. I'll be 78 in March. My Father unfortunately in my opinion had an HMO on Medicare, and might have gotten quicker attention when his symptoms were obviously an internal bleed. I suspect he'd be here today with better observation and treatment, but who knows.

In any case I think a very big danger with our illness is Pneumonia. I once read that it is the leading cause of death with CLL, due to our very low immune systems, but I haven't done a study on it. The treatment most of us are on is Novel Targeted Theraputics with BTK Inhibitors. My treatment started January 2024 after six years of Watch and Wait with Brukinsa, and my WBC went from 150,000 to 12,000 in one Month. I like my chances to go a long time, especially because my Specialist had me started on IVIG infusions every four weeks back in October 2023. I idea was to boost up my ability to fight infections, and its worked beautifully in doing just that.

Carl

[Sunshineatleast in reply to wizzard166]

Thank you for that information. Very useful