Happy to be in this group and read all your stories. They have been supportive.
My husband was diagnosed with CLL in 2007 August. His counts were high then WBC about 150,000. He declined chemo then opting for alternative treatments. We tried that for a year. Numbers got worse to almost 300. Sorry don;t remember specific numbers. He agreed to chemo because he was so sick and we almost lost him. He responded very well to rituxan and something else. Then while watching news one day, i saw imburivica being approved. We called the oncologist and actually informed him. He was among the first people to be started on it and it was magical. Life went normal and except for labs every three months, we forgot he was living with CLL. That drug gave us life, allowed us to be family, have vacations and have an almost normal life. We have two kids below 10 and 11.
Come this year, he started getting sick. Has had multiple hospital admissions this year from pneumonia, mosquito bites that left huge skin pain sores, flu, fever of unknown origin etc.
We requested for a second look at Imbruvica. His numbers were going up again and we got to 120,000. They did tests and he had 17p deletion.
Woke up some morning last month with extreme pain to left side. Could hardly walk. He was appearing confused. I rushed him to the ER. His pott. was 7.00; critical value Spleen was severely enlarged giving him the severe pain. The oncologist had to figure something out. He decided to go venclexta. His WBC count them was about 150.000. He is now on week 4 with 200mg. He was in the hospital for 2 weeks then. He went back last weekend for fever of 103. He was released on Monday. We have been home now almost a week and praying he does not go back. He is extremely tired. He has extensive mouth sores which have been a story this year.
His number are low low with WBC 15; Lymp 14.1 and neutrophils 0.00. I am worried about the neut being at 0. He was given IG and is on levaquin for prevention of res. infection purposes.
He gets to 400 next Thursday. The numbers have been drastically climbing down. His hg and plate have been low before treatment but seem to be holding steady.
We will like to know any experiences with this drug. Thanks for listening and thanks for the support.