Nice to meet you: I am new to this... - CLL America Support

CLL America Support

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Nice to meet you

siciliansoul
siciliansoul

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.

6 Replies

Buona sera anima siciliana!

siciliansoul
siciliansoul in reply to Lola69

Buona sera! Come stai?

Lola69
Lola69 in reply to siciliansoul

Bene grazie spero anche lei.

siciliansoul
siciliansoul in reply to Lola69

Si, bene. I understand Italian better than I speak it. :)

Lola69
Lola69 in reply to siciliansoul

Like my kids.

Hello siciliansoul!

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!!

GP