In 2011 CLL Tracker clltracker.co.uk was introduced to share patient specific data on their CLL experiences. This international website provides detailed information, in graphical form, relating to:
• Diagnosis and staging
• Prognostic markers
• Blood results
• Complications of treatments
As a result of changes in data privacy and the ever changing landscape of CLL, the website has been redesigned to reflect these developments. I would like to invite you to submit your CLL/journey details. The 2019 survey can be found at the following address: clltracker.co.uk/survey/
I would assure everyone that the data submitted will not, under any circumstances, be passed onto any 3rd party. The information collated is only for the benefit of you!
For this 2019 survey to be successful, it will require the investment of your time to complete the questionnaire (a few minutes if you have not received treatment, and maybe only 10 minutes if you have received a number of treatments).
The website can be found at the following address: clltracker.co.uk
I would add that I am a CLL patient with 19 years into my journey.
UK, Bournemouth. Dx May 2000. Age 63.
2002 Oral Fludarabine.
June 04 and Jan 05 4 weeks of Rituxan.
Oct 05/Feb 06 monthly Rituxan and Chlorambucil.
July/Dec 08 RFC.
June 2012 Bendamustine and Ofatumumab, but changed to Rituxan.
2014 to date IVIG.
Jan 2017 Ibrutinib.
Trisomy 12 (NOTCH 1 and SF3B1 unmutated), IgVH mutated, ZAP70 -ve, CD38 -ve.