My husband George’s WCC has jumped from 28 to 60 in 6 weeks, Haemoglobin dropped from 127 To 118 & Lymphocytes from 22 to 55.6 & Platelets 87 to 67. Doesn’t know if there are lymph nodes as Oncologist kept in Brisbane this trip so no examination so a Pet scan would need to be done. No weight loss. Been on Ibrutinib 4 years this March. Just over 2 years on 320 mg then 18months ( we think) on 280 mg now back on 320 mg since September (?) [Would like to ask the Oncologist for actual figures but not available] Does anyone have any ideas about looking like starting new treatment of Venetoclax on the above data? Dr was to phone from Brisbane after George’s Intragram infusion day here yesterday, but still no word or our busy phone has caused us to miss his call. Just a bit concerned not knowing what’s ahead?! Thanks in advance.
What’s going on ? Time for new treatment? - CLL Support
What’s going on ? Time for new treatment?
I'm sorry you have had such a disjointed meeting with your husband's oncologist.
He would indeed be able to switch to venetoclax per leukaemia.org.au/media/brea...
Venetoclax/Venclexta"is approved for Australians with relapsed or refractory CLL with 17p deletion, a mutation that makes the disease resistant to standard treatment, as well as for people with relapsed or refractory CLL who do not have any other treatment options available." (My emphasis)
Even though it appears that management of your husband's CLL by ibrutinib is waning, it's important to stay on ibrutinib until he transitions to his next therapy to prevent what's known as tumour flare.
Neil
Thank you AussieNeil, we have had such a mixup this month between our hospital here in Rockhampton sending the list of patients to Brisbane to receive treatment here and then the oncologist not being able to come to Rockhampton due to Covid in Brisbane, him having to phone said patients: not receiving a call but Sisters on ward & Physician said to expect a call with those results; messages not passed on properly last month, person on switchboard transferring to incorrect office being told Oncologist is in Rockhampton knowing full well he wasn’t! having just spoken to Oncology at our end who said Doctor is not here on Wednesday either! What a show! All reminding me to e-mail Doctor’s office, instead of phoning with messages getting lost in future. George’s bloods have been misbehaving now since September and Dr has said more than likely he will have to start Venetoclax . He’s not looking forward to it since we’ve been told he will be confined to hospital for 3 to 6weeks while ramping up the dose, but I suppose that’s the best place to be. Still awaiting a call, maybe no beds available? I just don’t know? Thanks again, Veronica
Is it possible in instances such as this to have a few obinutuzumab infusions to bring the lymphocyte count down?
With platelets and haemoglobin counts dropping this low, the lymphocyte count is a secondary issue to the bone marrow involvement. A few infusions are unlikely to provide a long remission.
Neil
Thank you, got it.
Veebeegeebee, I wonder why they said your husband would be "confined to hospital for 3 to 6weeks while ramping up the dose"? I was classified as fairly high risk at the time I started venetoclax. They kept me in hospital for the day and overnight for the first couple of dose increments, and then in the day ward for the later dose increments (staying in a motel at night, as I was away from home). They had to see my blood results the next morning before I was allowed home with the rest of my pills. That was in a clinical trial which was closely controlled. So surely your husband would have to be at exceptionally high risk of tumour lysis syndrome to be kept in hospital for such a long time?
Tumour Lysis Syndrome has been mentioned; George's CLL was supposed to be one that didn't "run off the rails", "may never need treatment" when he was first diagnosed in 2007 (at age 55) [more than likely had CLL for much longer, just not diagnosed], since in December 2010 everything went haywire! He's been running uphill ever since! Thank the Good Lord he's still running..........LOL! You know he's always been a 'cup half full' person and I really think that attitude has helped him in his journey. Richter's (?) syndrome? has been mentioned as well.
Yeah, they always give you the hopeful stuff at the beginning. But as you (and I) are finding out, no-one knows how the CLL will evolve over time, often with increasing mutations.
I was on zanubrutinib for a year - it was like magic for me, and then between one 3-monthly check and the next it suddenly stopped working. They changed my treatment within days. Seems like George has also become resistant to ibrutinib.
If he had Richter's syndrome he would probably know about it by now if his bloods have been deteriorating since September - it's usually a pretty acute lymphoma. You would also hope that if your doc suspected Richter's he would be acting with urgency. So you should be able to put your mind at rest over that issue. It will just be a change of treatment. Make sure you note AussieNeil's warning above - George shouldn't stop his ibrutinib until he goes onto the next treatment. They told me to stop mine a few days before, but I kept taking them until treatment change-over day.
finally.....
New CLL patient having mild sweats on n off 
Feedback on my new treatment options, what to do?
Is anyone on Essential Oils for W&W?
Is anything known about time to first treatment after diagnosis?
