I am new to this community and to CLL. I was recently diagnosed but have, apparently, had it for years. Despite this, I am early stage. Nothing's changed. I don't feel any different than before they said I have it. Had they not diagnosed it, I would have gone on not knowing and wonder if that may have been better. I'm hoping that I can learn from what others have done and perhaps bring some insight of my own. Thank you for being here.
Nice to meet you: I am new to this... - CLL America Support
CLL America Support
Buona sera anima siciliana!
I also was just diagnosed less than 2 weeks ago. My hem/onc said I most likely had CLL for 3-5 years and didn’t know it. So far I am asymptomatic and just had a “clear” on my CT scan for enlarged nodes and spleen, however my CBC shows a wbc of nearly 40,000 with a large lymphocyte %. I go in next Thursday for a follow up on my bone marrow biopsy done yesterday to find out my stage. So yay! Lol!
I was talking to my brother-in-law and we agreed that the timing for knowing is peculiar. Had I found out 3-5 years ago would I have been as active and vibrant during those years? Because I feel I’m not really now. Although I feel like I’m constantly battling the flu now, not sure if that’s all CLL related or partly psychosomatic...or both. The body/mind connection can be a mystery!
Btw if you haven’t seen it there’s also the CLL Support Association group on this site as well. It seems to be a much more active group and has over 10,000 members, so you might want to check that out. There’s also the CLL Society that you can check out with a blog by Dr. Brian Koffman that is inspirational! Here’s a link: cllsociety.org/
I’m encouraged by the stories and data I’ve read here and elsewhere about living with CLL for years as a treatable and manageable disease! And they’re constantly coming up with new ways to battle it...with a few whispering of a cure. Time will tell. I know that I’ll take all of the good news and vibes I can get!
Anywho thanks for sharing your story and I know you’ll find this and the other forum very helpful! I’ve recently posted my first post on the CLL Support Assoc page if you want to read a bit about where I’m at. My best to you!!