CLL along with hemolysis

[Swanseacity]

i started OV treatment in April and have finished the cycles of Obinutuzumab. My Venetoclax dose has been changed a number of times due to counts. Last few weeks have been 300mg and blood has been pretty normal except for platelets which have often been low but are now 88 - with everything else pretty much in line. Oncologist has stopped venetoclax until next Tuesday to see what happens and look for hemolysis markers. Anyone been through this - know of treatment/ challenges? I’m not as knowledgeable as most of you so would appreciate simple explanations.

In Canada

[CoachVera55]

O&V is my next treatment plan. I do read that many things have to be modified based on your individual situation & blood work. From what I read, its normal to reduce the doses of Ventoclax & hold Obin based on the patient’s response. I did 13 months of Zanubritinib a BTK Inhibitor, which I was to be on long term but could not even tolerate 1/2 dosage of it. I believe getting through it with Non Detectable Level results & surving the side effects is the goal. #GODSPEED🙌🏾

[UKwoman]

I had a lot of problems with this treatment which I started in January 2023 and finally finished at the end of March this year. In fact, I never had the last two rounds of O as it caused a serious drop in platelets, at the worst down to 4 and also wiped out my neutrophils. I had to keep stopping the V for a week or two and then restarting and eventually I remained on 300mg for the remainder of the treatment. This was alongside G-CSF injections which I had to give myself at home for the neutrophils, and also the occasional injection by haematology to boost the platelets. Initially I had platelet transfusions but they only push the numbers up by a few that lasted for 10 days maximum. Apart from white cells, my blood numbers 2 weeks ago are all in normal range for the first time in 20 years! So I got there in the end.

[Cdub32 in reply to UKwoman]

Great news,,you got there! I'm about to start OBI and Ven and I'm anxious to say the least. After two failures, CalQ and Brukinsa, of bruising and bleeding..6 days in the hospital for the Brukinsa reactions..hematoma in left leg and now 6+ weeks healing..You give me hope..

[craterlake in reply to Cdub32]

what is OBI ? . i had very serious cytopenia with calquence ..i am now on my 21 month of O&V and doing very well .. blessings , james

[Cdub32 in reply to craterlake]

OBI is O..great to hear you're doing well. Thanks for sharing..gives me some needed confidence.

[craterlake in reply to Cdub32]

👍🙏