Anyone taking obinutuzumab + Calquence (acalabrutinib) and venetoclax?

Hello I’m 75 this month and was diagnosed and monitored with CLL since 2023. I also had a jump in WBC count in 2017 and 2019 my primary doctor casually mentioning high WBC count because my count returned to normal until 2023 WBC and levels continued to rise slightly.
I don’t want to scare you and I’m stressing…..my body has extreme medications reactions.
My hematologist started me on Calquence with good results for 30 days. 6 days into the second 30day Calquence prescription I started severe painful burning hands forearms, calves and feet.
The doctor insisted it was not the Calquence and more orthopedic due to my orthopedic cervical fusion and metal in both ankles. I want to tell you the months of research and joining MAO I have not found any person complaining of severe side effects from either Calquence or Zanubrutinib.
After a week the pain faded and orthopedic ruled out it being orthopedic related.
Two weeks later the doctor suggested Zanubrutinib a similar pill. I asked because I have a $20,000.00 prescription of Calquence I have to throw in the trash because I can’t give it to a needy patient, can I try with 10 Zanubrutinib pills? Answer… NO. Well 6 bills of Zanubrutinib and the same side effects severe burning pain in forearms hands calves feet.
A 16 hour ordeal of severe pain rubbing my feet wringing my hands drinking about 2 gallons of water I could feel the pain fading a little more every time I urinated. The Calquence and Zanubrutinib cost about $20,000.00 for 60 pills. I now have $40,000.00 worth of pills for the garbage. We just received our medicare supplement prescription insurance premium increase of 90% just a few dollars short of doubling.
Enough complaining lol.
The doctor 1 was anxious to start Iron Infusion and Ventoclax.
With that I made an appointment with another doctor.
After we discussed my CLL treatment and my past monitoring I was asked……Did you have symptoms ya know night sweats, no appetite, short of breath. My answer NO symptoms & looking at my bloodwork history I was asked Y was pill therapy started ? Answer I was told Hemoglobin low enough to warrant therapy.
Docs answer….. we don’t start therapy for Hemoglobin as close to normal as mine was and is presently.
I’m not criticizing doc 1 I know all intentions are to help.
New doctor 2 showed me my numbers are showing……and I’ve never been told I have stage 3 chronic kidney disease. Even after my July visit to the urologist with pee test & ultra sound of both kidneys.
New Docs diagnosis summary…. Asking did you have a pet scan? Bone marrow Biopsy? …..No.
We’re starting there because the doctor 2 wants to know if there are underlying factors causing my CLL. I have a PET scan scheduled for starters and we’re going from there. I admit I’m more comfortable with Doc2.

Hello, my CLL was treated with Obinutuzumab infusions and Venclexta in I completed the 6 months of Obinutuzumab and had to stop after 7 months of Venclexta due to severe pulmonary issues. Trips to Mayo and NJH determined that I had Bronchiectasis and CFTR (Cystic Fibrosis related disease). My immune system was wiped out from the CLL treatment and I am now on weekly infusions of Hizentra (SCIG) for my immune system. The good news is there is no sign of the CLL as of now (treatment began in August 2024).

Thank you for the reply. These are definitely issues I will address with my Hematologist. I'm glad to hear that your CLL is gone!

@gails53 I’m sure it’s a relief to know you have no trace of CLL. It’s a relief to me! Your story is really educational for me. Thank You. I hope your next therapies cure your new diagnosis. Prayers from me.
Did you have CLL symptoms when you started Obinutuzumab infusions and Venclexta ?
Doctor 1 intended the same Obinutuzumab infusions and Venclexta for my next therapy. Doc2 felt my numbers and my no CLL symptoms is not where DOC2 starts any therapy.
My being on Calquence 1 month with severe side effects then Zanubrutinib with the same side effects ? stopping left my blood numbers a mess. I am reluctant to start another therapy and doc2 is as well. For me ? The side effects were 1. painful and 2. Throwing thousands of dollars of medicine in the garbage if my body can’t tolerate it.

@mulle I was diagnosed with CLL four years ago (at age 69). My main issues during watch and wait were fatigue, very swollen lymph nodes , and frequent lung infections that got progressively worse. When it really affected my activity levels (I'm an avid hiker), I opted for treatment. My pulmonary issues got worse with my treatment until I needed supplemental oxygen and my Oncologist stopped the Venclexta. A visit to Mayo uncovered the Cystic Fibrosis and Bronchiectasis as well as my severe immune deficiency. I currently take Brinsupri for the Bronchiectasis and Pulmozyme for the CF along with my AWC. I'm back to hiking, did a half-marathon in Acadia in June and will do the Mammoth March in Georgia next month. So, there is life after diagnosis and treatment! Good luck to you in your journey.

@gails53
what do you take for the CLL ?

MAO must have shocked you with their diagnoses. The fact they have you diagnosed and getting stronger is easy to believe. I’m sure improvement will continue.
I already see a difference in doctor 2s progress in determining the stage of my CLL

MAO had an impact on our family when ophthalmology when my daughter’s stroke team ophthalmologist wanted to sew her eye shut.
MAOs ophthalmologist gave instant's management direction saving and maintaining the eye. Today You wouldn’t know her eye has a problem.