What a journey

[CAM729]

THANKS FOR THE ADD....Back in 2010 I was sent to a local oncologist, and he was my doctor for 3 years, he pushed for FCR straight out of the gate, I had done so much reading and research, I knew better than doing it. So, a trip to the James to a CLL specialist, after multiple tests and a lot of sole searching, with a neck that looked like a basketball, WBC at 390,000 I done 12 weeks of Rituximab and Benadryl, that took my neck size to normal, but gave me time to look for a clinical trial, soon after stopping my cancer came back really quick, so I started a trial using ACP-196 ( Acalabrutinib) in 2015 and the drug worked well for me all this time, side effects was muscle pain, bone pain and tiredness, but the cancer was held at bay until recently, now I'm in search to find something else and not sure which way to turn, we all know with each treatment, we create mutations, that make our cancer harder and harder to treat, I'm not real sure what my next move is, but it has to be the right one and has to last at least several years, praying for answers and hoping I find the right path.

[lankisterguy Volunteer]

Hi CAM729,

-

I think most CLL experts would suggest Venetoclax next, and depending on your medical history and CLL progression, they might add it before you stop the Acalabrutinib.

-

I got 6 good years from Venetoclax after 30 months of success on Idelalisib / Zydelig.

-

Since there are no cures, we each must look for the best way to get a few years more time and string together treatments and temporary remissions.

-

Go back the CLL experts at the James and listen carefully to the options they suggest.

-

Len

[Palmetto]

Since you did well previously and did you really mean Benadryl or bendamustine? Seems like obinutuzumab and Venclexta would possibly be next step?