Anyone have chronic lymphocytic leukemia (CLL)?

@philipschuyler wrote “ Do you think I need to get an oncologist despite being asymptomatic?”. In a word, Yep!
☺️
But you know me by now, I’m not economical with words. So here’s my 5 cents, adjusting for inflation.
I think it’s in your best interest to get a 2nd opinion at least. Plus you’re not happy with your current docdtor. I do suggest getting a hematologist oncologist. A cancer doctor who also holds a specialty degree in blood cancers and conditions.

Even though you pretty much decided you don’t want to see someone, there’s a little bit of something tickling in the back of your noggin that says you should do this, right? Honestly, it doesn’t mean the beginning of the end, which is your worst thought. This will be a means to get a proper diagnosis then you can move forward! As I said, if this is CLL and at the very early stages, active surveillance is most likely the game plan. What do ya think? Does that make sense?

@loribmt
It does. And I've decided to try to get a referral to an oncologist from my regular doctor on Monday.
Thank you for helping to persuade me to do what I inherently knew I needed to do, but was afraid to do.
@philipschuyler

Hi @philipschuyler Occasionally, most everyone needs a little nudge to take the first step towards resolution. ☺️

@slats Welcome to Connect. You’re already in a great discussion with members who have CLL..some in the beginning of their journey and some a little further along.

If you’d like to follow all the discussions regarding Chronic lymphocytic leukemia (CLL) here are the results of a quick search for you:
https://connect.mayoclinic.org/search/
Were you or a loved one recently diagnosied with CLL?

@loribmt
I certainly needed a nudge. Thank you again.
@philipschuyler

Hi @ksalvia, if that was less technical than you wanted, here are two of many DEEP rabbit holes you can venture down to learn more about CLL:
- https://cllsociety.org/newly-diagnosed/
- https://www.cllglobal.org/cll-educational-videos/
Enjoy!

@philipschuyler absolutely get an oncologist. For one thing, they are often booked way out. This is especially true with doctors that specialize in cll. You would benefit from developing a relationship with the doctor before things get really serious.

@dorothea58
Thank you for responding to me. The fact that most CLL patients are telling me the same thing
is gradually persuading me that I do need to get a new oncologist, despite not having any CLL
symptoms at the moment.
Thanks again for the feedback. Have a good one.
@philipschuyler

@loribmt
As someone who has been dealing with this for 6 years now, I have learned a whole lot bunch! Knowledge is key to you becoming a Partner in your CLL journey!

I highly recommend a Hematologist/Oncologist to assist you on your journey!

I was in watch and wait for only 6 months! I am now on my Second round of treatments the first round having failed to control things for me!

This is difficult to hear but it is very different for everyone who has CLL. While it is the same disease, we each have different Genetic abnormalities which effect this disease process in many different ways!

I am on the far right spectrum with Poor prognosis due to my genetic makeup, others are on the far left of the spectrum and may never require treatment and remain on watch and wait till they pass!

Once you get your Flow Cytometry and FISH tests you will learn where you are on the spectrum and where can not emphasize enough that knowledge is key to success in this process no matter where you are on the spectrum!

Best wish’s and I hope you enjoy a life time with No treatment!
Cliff Robinson

Hi @hissteps4u Welcome to Mayo Connect! And thank you for jumping into the conversation, sharing your valuable experience with having CLL. I’m going to tag member @philipschuyler so that he sees your reply. https://connect.mayoclinic.org/comment/1567026/

He’s had questions about his early diagnosis of CLL. So I think your input will be helpful for him to hear first hand from someone who has walked the walk. I fully agree with you about knowledge is the key to becoming a partner in your health journey. That’s how I arrived here at a mentor in the Blood Chancer & Disorders group, along with the Bone marrow transplantation group. My past involvement was with AML and BMT, 7 years ago. The more we learn, the better we’re able to understand what’s taking place, what’s required of us to deal with it and how we can learn to trust our doctors.
I wish you well on your 2nd round of treatments. What is your current treatment plan?