Question:
I am getting ready to make a donation and join CLL Society. I was diagnosed last week with CLL by Integris Cancer Center at Stage 0. Is anyone recommending immediate medication as opposed to wait & watch every three-months approach?
Answer: We are sorry to hear about your diagnosis but so happy that you have found us. We hope that we can be the place you come to learn as much as possible about CLL throughout the years.
While that question seems like a simple one to ask, there is a TON to unpack. Generally, staging is not used much in CLL, and watch and wait is extremely common, especially after you first learn of your diagnosis. Additionally, medications are not generally considered until symptoms worsen and/or lab trends over time indicate it is time for treatment. We highly recommend you consider doing the following as a new patient:
- Take this time during watch and wait to learn as much as you can about the disease by reading information on the website, watching some of our on-demand webinars, as well as attending some of our live broadcast webinars. Here is a good article about watch and wait:
- https://cllsociety.org/2016/03/cll-watch-wait-start-treatment/
- Make sure you are very in tune with infection prevention as possible, especially since we are currently in the midst of a pandemic. We have a ton of information in the COVID section of our webpage regarding CLL patients and COVID. Those who have CLL do not have adequate immune systems, and you should now consider yourself as being an individual who is immunocompromised.
- Please make sure you are seeing not just a general hematologist or oncologist, but a CLL Specialist. You can find a list of them located here:
- https://cllsociety.org/toolbox/cll-doctors/
- Do not receive any therapies until AFTER you have had the appropriate biomarker/genetic testing performed to see whether or not they will work for your particular form of CLL. You can read more about that here:
- https://cllsociety.org/cll-101/test-before-treat/
- And perhaps most important for you right now, please consider joining a support group near you. Patients report this being one of the most valuable tools they have when they are newly diagnosed as they learn from others who have been in their exact shoes before. We have over 30 groups across the nation that meet virtually once a month right now. You can find more information on that here:
- https://cllsociety.org/cll-specific-patient-support-groups/
That should be plenty to give you a head start! Please know we are here for you should you need us.
