Anyone have chronic lymphocytic leukemia (CLL)?

When my oncologist diagnosed me I was 29 and he said "you will have this your whole life and it will kill you". I wish I had some of yall's doctors that were more encouraging. It's been a difficult 10 years dragging those words around with me into everything I try to do.

I have my first second opinion @Mayo Tuesday.
I had lots of questions After my 1st diagnosis I was not satisfied with my Doctor's Answers to some of my questions. So I requested 1⁄2 opinion and was pleased to hear from mayo. There are lots of treatments from what I understand and improvements and hopeI am anxiously . I am anxiously awaiting my appointment.

Very encouraging. Thank you!

I am having cataract surgery next week, and I know there are eye drops prescribed to prevent eye infections. Hopefully it doesn't have an immunosuppressive agent in it!

You might want to discuss with your oncologist what to be alert to with regard to immunity. I am beginning to track down one item now. I was given a script and sample packs by an ophthalmologist of an eye drop that is an immunosuppressive agent. Thankfully I did not fill the expensive script until I saw if the sample packs of drops help. Now to check with my oncologist if they do help with "dry eye". I had come across a study that the life expectancy if someone with CLL gets an eye infection is measured in months.

Welcome, @ksandusky86. I’m just blown away with the callousness of your oncologist with regards to your diagnosis of CLL. Talk about hanging a 50 pound sack of despair around your neck with a comment like that! No wonder you’re feeling weighed down with negativity.

First thing I’d suggest is finding another oncologist. We don’t have to be BFFs with our doctor but having one with a defeatist attitude is a real downer! From my understanding, CLL statistically remains one of the more treatable forms of leukemia. It’s often very slow to develop and for many patients, treatment can be delayed for years. The newer treatments available now are highly successful in helping to keep the condition under control. Telling you that you’re going to die from CLL, in my opinion, was inappropriate. Obviously life holds no guarantees and none of us can avoid ‘pushing up daisies from the underside’ at some point. But that comment just seems heavy handed. Words have consequences and this obviously impacted you for 10 years already.
So now it’s time for new words. Live your life! You’ve had 10 years of worrying about something that hasn’t happened. At 39, you could have another 50+ years ahead of you to enjoy your family, friends, hobbies and activities that bring meaning to your days. Work with the premise that “if something happens, then I’ll deal with it”. It’s so much healthier than living with worry and fear.

“Fear does not stop death. It stops life
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.”

You haven’t mentioned if you are currently in treatment? What has your oncologist discussed with you? Are you in active surveillance?

Yes, since 1996 with only having oral chemo 3 time when my white count became 80-100. I have been stable since 2015 with just blood work twice a year to check. It was scary at first, but I remember my first oncologist telling me to go about my life as though nothing had changed. It took a while, but eventually I did.