I'm back

[WestCoast_1]

Hi All,

I'm back after a several year hiatus. My CLL had been very slowly progressing when I first joined, so I didn't keep up with this group.

I just received my bloodwork today. I'm now over 106,800 (70,000 3 months ago) which concerns me. No phone call from my hematologist/oncologist yet, however he did say last year that he would get concerned when I get over 100,000.

I'm looking forward to getting up to date with all the posts here and to gain some comfort.

[Rrriver]

Hi West Coast _1, I live a couple of Provinces over from you and wish you all the best. I was diagnosed with cll in 2014 , did chemotherapy in 2018, and I am taking the new BTK treatments acalabrutininib and now zanubrutinib. The new treatments are great and I am feeling well. All my bloodwork #’s are normal , spleen and lymph nodes are back to normal. My platelets are at 60-65 , and are my only concern, but I am feeling blessed. Rrriver

[WestCoast_1 in reply to Rrriver]

Thank you so much for your reply Rrriver. I read your comprehensive bio and appreciate your feedback and well wishes. I'm so happy to hear the treatments have gone well. Wishing you continued improvements Rrriver.

[AussieNeil Partner Administrator]

Welcome back after a 5 year break! Obviously we'd like to hear better news for you actively rejoining, but with respect to your absolute lymphocyte count and WBC counts, with CLL, there's nothing particularly special about 100k: yhealthunlocked.com/cllsuppo... We have some members with counts over 400k still in watch and wait.

What's of concern, is how fast your ALC is starting to rise. If that doubles in under 6 months, that's when you need to be decided on your preferred treatment option. How are your other CLL symptoms going, in particular your other blood counts, nodes and spleen going?

Neil

[WestCoast_1 in reply to AussieNeil]

So nice to hear from you again AussieNeil. Your reply already calmed me down. Yes, I remember something about doubling time, so I'm glad you mentioned it.

I'm in a unique situation as I recently moved away from the vicinity of my hematologist/oncologist (5 hr drive) but thankfully he has kept me on as a patient by phone. I may have to make a trip to see him in person if he can't send me somewhere local.

Monocytes are high (subpopulation of larger variant forms in this category), MCHC low, platelets normal. I do have slightly some swollen lymph nodes and fatigue. The report says prolymphocytes are seen, accounting for 5% of lymphocytes. I don't feel any discomfort in my spleen area, but who knows.

I will have to start doing some research again to get myself up to speed on all this. As always, your feedback is so helpful AussieNeil.

[neurodervish]

Welcome back!

[WestCoast_1 in reply to neurodervish]

Thank you! ☺️

[Skyshark]

Welcome back. You have probably missed all the excitement and relief for the introduction of new non chemo treatments. You can discard any report you find prior to 2017 and even later if it uses chemo as anything other than a comparator.

[WestCoast_1 in reply to Skyshark]

Good to know. Thanks so much Skyshark,

[Stavrou1]

Welcome back 😀.

[WestCoast_1 in reply to Stavrou1]

Thank you Stavrou1