First THANK YOU, THANK YOU - the amount of support we received from this forum has been overwhelming and has helped us tremendously, AGAIN THANK YOU
We didn't think it could get worse then last week but yesterday was certainly the scariest day we have had since we were diagnosed 7 years ago. TLS was not our issue the CLL has/had decided to take its own course. My husband was not responding to the venetoclax and his WBC had risen to 390 - we have a great relationship/partnership with our oncologist and it was the 1st time we saw the "fear" in his eyes. After we went through all the negatives and what was not working - I asked him if we were in trouble and his response was yes.
He left us alone for a few minutes to catch our breath and have a good cry as both of us were like "deer in the head lights".
The plan - my husband was to be re-admitted to hospital and we moved forward with 2nd dose of 50mg, he also introduced a steroid dexamethasone (sp?) to help with the breakdown of the nodes and we were going watch till the end of the week and if nothing worked then switch to Idealasib (sp.).
This morning my beautiful husbsnd woke up and looked and felt like a new man - we decided to increase the venetoclax to 100mg vs. waiting till next week - the goal was to try to force the drug to work. If everything remains "stable" we will increase to 200mg by the end of week. We are on the FAST TRACK plan vs. the recommended plan and we will remain in hospital for 7-10 days. At this point our DR. would like to see a threat of TLS - just so we know it's working.
Again, thank you for all the prayers, love and support - this fight is a tough on.