Anybody on Treatment for CLL?

Yes. I started treatment this past March. It a targeted and immunotherapy combination treatment of daily oral Venetoclax (Venclexta) plus 6 cycles of intravenous Obinutuzumab (Gazyva). The treatment is working well so far and side-effects are much lower than traditional chemo. There are options for treatments of CLL/SLL and every oncologist has their favorites.

I can’t get weblinks to go through on Mayo Connect yet so go to ChemoExperts.com and search for Treatment Regimen for Chronic Lymphocytic Leukemia (CLL) if you want more detail.

I can send you a lot more in the way of helpful resources once Mayo Connect allows me to.

abide:

Attached is the best resource for CLL/SLL I know of.

Understanding CLL/SLL - Chronic Lymphocytic Leukemia and Small Lymphocytic Lymphoma

Hi @abide, in addition to the helpful information from @fortunateoldguy, I'm tagging other CLL members like
@normahorn @aleeab @marytheresacll @sue58 @remimor @mylove to share their treatment experiences.

If your chronic lymphocytic leukemia doesn't cause symptoms and doesn't show signs of getting worse, you may not need treatment right away.

@abide, is this a new diagnosis for you? What treatment is being recommended for you?

I am fortunate as I am in stage 0 and may never need treatment due to the deletion type I have.

Providing more information about your cll may elicit more responses.

I have not had any treatment yet. White cell count is just below the rec'd range, but it has been stable at these levels.

I've been on IVIG since 2010. Developed Pyoderma Gangrenosum in about 2015 as a result of CLL. Underwent treatment with Rituxin and bendimustin then back to IVIG every 6 weeks. Have developed Pyoderma Gangrenosum again and now half way thru 4 weeks of Rituxin only to determine if it is effective. May be adding ibrutinib if Rituxin doesn't control sufficiently. Have been advised I may need Rituxin monthly. Guess I'll not be Stage 0 after this. Rituxin did cause some hair loss, thinning on top of scalp and have been using Men's Extra Strength Rogaine since '17. It has helped about 70%

I 67 years old and live in Canada. I was diagnosed with CLL in December 2021, so 2.5 years ago. From the begining smudge cells were present. Every blood test showed a rise in white blood cells and lymphocytes. Although I was told they would probably level out, they never did. Exhaustion was my biggest factor and always being very active was really denting my style as I could only do half of what I used to do and that was with a nap after any activity. I had swollen lymph glands everywhere. Finally in October 2023 I was told I had high risk cll with poor prognosis.
I have:
chromosome 17p deleted
TP53 variant identified
IGHV hypermutation
status: unmutated
In april 2024 I finally had a CT scan which is leading to more tests particularly on my thyroid which shows some large nodules. I will see a specialist in September.
On April 17, 2024 I started on Alcalabrutinib, or Calquence. With three more bloodchecks, the WBC count and Lymphocytes continued to climb but at least my lymph nodes were not as swelled . Finally on June 5, the numbers started to decline. They are still very high but at least are going in the right direction. I remain very tired. The joint pain increased, sometimes i feel itchy and my lips get very dry so i do keep them moisturized. I am going for another appointment next week so will see how my numbers are at that point.
I hope this information is helpful for some people out there who have just started their cll journey. And here is hoping that your numbers do level out and never reach the point of needing treatment!