the bad prognostic markers

[anongirll1927]

I know there are multiple posts like this but I just need some help and guidance. My dad just got his FISH test back and it’s all the bad markers…unmutated/17P/I believe TP53. He’s currently asymptomatic and the NP thought there was hope for indolent disease. I’m so upset and my mom burst out sobbing when she realized he had the worst ones. Idk what to do, this sucks. I know there’s been a lot of people living with this diagnosis for years, so would appreciate any insight.

[Spark_Plug]

Try to highlight that the worst markers are not so bad that CLL can still be dealt with successfully.

Many will be on to share the same markers it still translates to years sometime. A lot was based on an older method of therapy (chemo) not the newer effective drugs.

It may just be getting a little more information and surveilling it a bit more closely.

Further talks with his doctors may be very helpful.

[thompsonellen2]

I have the same nasty markers and I remember feeling devastated. It is less likely this will be indolent, but unlike 10 or so years ago, there are ton a treatment options. I'm going to say it doesn't suck and that you won't have your ups and downs but I'm 8 years into this I feel good and I'm going on vacation to a week long adult figure skating camp (think skating 4-5 hours a day, i.e. a lot of physical activity) and I have remained my normally happy self 98% of the time. When I have felt sad or had questions, I have use this amazing forum and always gotten the support I needed. I hope this helps a little. Hang in there.

[Hoffy in reply to thompsonellen2]

I had the same markers and I am eight years out as well. Things are changing on what is good and bad.

Besides that there new drugs every year that seem to be available for CLL.

Be well,

Hoffy

[Snakejaw]

I have all that and more. That generally means he will need to be on some kind of medication or treatment sooner than if he had the "good markers". The prognostics of these markers as poor generally come from using traditional chemotherapy, methods that are basically outdated. The prognosis is still good, the diversity and effectiveness of treatment options are out there and there's legitimately a bunch of things coming out. Practically every week it seems I hear about advancements or new options.

I'm 38 years old with lots of nasty CLL markers and I live a normal active life. I take pills in the morning and go about my day. If he had to get a cancer, he generally chose a pretty good one.

[MSUdawgMom]

I was diagnosed, age 55, in March of 2013 with those same “nasty markers” (17p/TP53 del, unmutated). I’ve also developed 5 other mutations since then. Even though I’d been an RN for 35 years at the time, I didn’t know much about CLL ( I delivered babies 😊) so I turned to Dr. Google…… which sounded grim with an “average survival of 4-5 years”……….. that was 11 years ago & I’m still kicking (pretty high for a 66 yr old 😜). I had a relatively short W&W & began my first treatment in March 2014 (Ibrutinib clinical trial). I started my third treatment regimen yesterday (Pirtobrutinib). (Had a 2 year fixed treatment of V&O in between). Be careful when you’re searching the internet for info, as much of the data is outdated & refers to earlier treatments of traditional chemo, which didn’t work well on the “bad markers”. The newer targeted drugs (BTKi & BCL2) work very well on these markers & there are many to choose from & even more on the horizon…….it’s no longer a death sentence 😊