I'm 4 1/2 yrs into my W/W status. Stage 0 = N... - CLL Support
I'm 4 1/2 yrs into my W/W status. Stage 0 = No symptoms Should I be looking for a Trial of some type OR leave well enough alone for now?
Leave well enough alone... it could be years before you need treatment... get healthy, through good diet and exercise...
Not too many treatment clinical trials for stage 0 CLL... 
Thanks everyone I appreciate your help on this. Have a great day and stay warm.
I agree with Chris. Even if you could gain access to a trial, what do you expect to gain from it that you don't already have? Why risk side effects if there is no need?
Neil
As Chris and Neil have said make the most of the W&W. It is very frustrating when we are encouraged for other cancers to detect early and get treatment immediately but evidence is compelling that there is no advantage to treatment before your cll symptoms require it. Long may you remain on stage 0
In the US there is a study at the NIH called Natural History Study and they glean much information from you and your bloodwork every three months. I felt that since I had an incurable disease it would be an important contribution to an eventual cure. Their good team of doctors are on top of all the studies and trials. They will work with your local hem/onc on making decisions when the time comes for treatment. I was in it a year and a half before Ibrutinib. Email me if u have questions. It's an option to WW.
Personally, if I had not had any kind of treatment, I would look into the NIH Study.After the first appointment travel is paid for and there is a stipend for lodging. You are being monitored by top world class specialists who work with your local doctor and should you need to consider treatment later you are on the top of the list for their trials.
Beyond that, I agree with Chris. - Sensible diet, exercise, and enjoy life.
And here is a Patient Power Video interview with Dr Andrew Wiestner of NIH where he explains this study and how to contact NIH:
patientpower.info/video/und...
Neil
As all above say, leave well alone. My haematologist is very clear early intervention does not help.
Enjoy your health and celebrate your luck.....and long may it continue!
It is tempting to want to DO something. However if you have no symptoms then what exactly are you treating? I look at it this way - the current treatments reduce symptoms but leave some core disease and other unwanted effects. They do not offer a cure. So there is little point adding to our burden. When the research and science gets closer to the root of the problem then things could look different.
