Anyone have chronic lymphocytic leukemia (CLL)?

@philipschuyler
People usually no longer die from CLL due to all the excellent treatment options available. No more chemo. It may be many years before you need treatment. Be sure you see and oncologist, who is a CLL expert.

@califirniagal
Thank you for your comments. I know that I should get a new oncologist,
but I'm dragging my feet. Frankly, I'm scared to death to start seeing another one,
esp after my first one wanted to do a CT scan, an MRI, and a bone marrow biopsy.
(He told me this minutes after telling me I had CLL and when I asked him
why all these tests were necessary he would only give me unresponsive answers like,
"to keep you healthy." He never told me a single specific thing about my tests. I learned more
from people on MayoClinic than I did from him. Even if I could find a better oncologist, I
can't justify getting test after test (some of them invasive) when I feel fine. I also can't take the
horror of waiting for test results. Each feels like it's going to be a life/death reckoning, but each turns out to be inconclusive, leading to another test. I think I'd rather do nothing at all, at least until I become
symptomatic, than continue to go through that.
Thank you again for responding to me.
@philipschuyler
thereby requiring another test.

@philipschuyler
They can often tell what they need to know by special blood tests and you don't always need a bone biopsy. Doctors often want a pet scan as a baseline for the future .

I just wanted to tag @philipschuyler @ksalvia @minnesotajim @hikerny @ftmolloy @lepkowicz @stynak2000 @normahorn @em1959 @califirniagal and other members in this CLL discussion to take a look at a recent news article from the Mayo Cancer Education Center regarding chronic lymphocytic leukemia. It was posted this morning by Patient Educator LizWaugh, @lizwaugh

Here’s the link!
https://connect.mayoclinic.org/discussion/questions-about-chronic-lymphocytic-leukemia/
It’s very informative and encouraging. I loved the line. “ Some people say that CLL stands for “Choose Life over Leukemia”. Let me know what you think!

@loribmt thank you so much for sharing! Really appreciate and enjoyed reading it. Helps confirm my hopes and thoughts. Very excited about the positive momentum in treating CLL.
God Bless and stay well!

@califirniagal
Thank you for the info.
The more people I talk to on Mayo Clinic, the more I'm realizing that I need to get an oncologist, despite that I'm still asymptomatic. From what I've been told, CLL can progress for a long time without the patient having any symptoms, and then things can get far more serious.
Apparently, someone with CLL can't just presume that he's a wait-and-see patient. A doctor has to tell you that. Is this a sentiment that you agree with?

@loribmt
Thank you very much for the info you've given me so far.
I've been scared to death to find an oncologist, so I was planning to do nothing at all unless I started to experience symptoms of CLL, but most of the feedback I've been getting says that I should start seeing an oncologist despite being asymptomatic. Otherwise, the CLL can progress for a long time without you even knowing it, and become far more serious. I just wanted to get your two cents. Is this a position that you would agree with? Do you think I need to get an oncologist despite being asymptomatic?

Want to follow all discussions about chronic leukemia

My primary care doc referred me to an oncologist in the network 3 years ago, because my lymphocytes were high. The oncologist checked me for symptoms in my lymph nodes and other areas where I would potentially feel pain if the CLL were progressing. He is also keeping a watch on my white blood cell count. He says I am still in the pre-CLL stage.
At first, I came back quarterly to watch for changes. Because there were none, the visits extended to every 6 months, and now have extended to annual checkups.
We are in a wait-and-see mode, but I do feel better knowing that I am being watched for potential changes, and feel even better seeing that there is nothing to be alarmed about. The oncologist visits give me more peace-of-mind than I would have trying to monitor it on my own.

@loribmt Thanks for this. It was less technical than I was hoping for but a nice gentle and calming look at CLL…. Pretty much exactly what the hematologist-oncologist told us. I’m going to give the link to all the friends and family who keep asking what’s going on. Should calm everyone down!