It's been a very rough two weeks for mama, but thought I'd post an update for others on this journey..
When I last posted mum continued to suffer from frequent fevers and heavy night sweats (soaked bed sheets) which they thought could have been an infection combined with aggressive CLL. Disease transformation (richters) was also considered and she underwent multiple biopsies and a PET scan on a painful inguinal node (groin area). Then we waited...
In the interim mum became weaker and bed ridden, stopped eating and there was concern the dose of Venetoclax (50mg) was not high enough to see her through to the next escalation the following week Thankfully the Drs added flucanazole to her medications, which amplified the strength of Venetoclax until we reached the next escalation day.
A week ago, whilst half way through the 100mg dose week, plus 2 x flucanazole, multiple IV antibiotics and blood and platelet transfusions, her fevers started to lessen. It was much needed relief for her as she was so weak from them. An infectious diseases specialist confirmed they hadnt found anything suspicious that could cause infection and then we also received the amazing news that her biopsy results did not show transformation!! Best part was it showed necrotic (dead) CLL tissue!!! Venetoclax has started working!!!
Today she is day 4 of 200mg. She has perked up a little, is starting to eat very small amounts, she has been free of night sweats for 3 nights and her fevers have stopped. She continues to require blood, platelets, and filgrastim twice a day (G-CSF) and a top up of immunoglobulin every few weeks. She is suffering from nausea, lack of appetite and weakness however she is on the up..... the biggest challenge now is avoiding infection however her neutrophils are slowly creeping up too
Emotionally she is totally drained, it has been such a fight for her life, and she feels very down to be feeling so unwell but gradually things are getting a little easier.
We are taking it a day at a time.
Reflecting on things, it seems that the period between ibrutinib and starting Venetoclax allowed the CLL to ramp up quickly to a very challenging level. I know the 'wash out' period between medications is something they are continuing to research (and now even combine the two with overlap) so maybe shortening this time between the two could have helped mum. We don't know, but it's a consideration.
This coming Wednesday she starts the final escalation dose of 400mg, and if her bloods improve we hope to get her home soon.