Great to have you aboard and to hear of your successful treatment on your CLL journey. I'm sure many of our community will be encouraged to hear of your successful treatment.
Thank you for sharing, long may you continue to feel good and enjoy life.
This is terrific. I'd love to speak with you directly to hear more about your story and feature it on patientpower.info/cll of the Patient Cafe to help give inspiration to more patients.
It's wonderful to have you as a member of our group ! Welcome! Your story gives a lot of encouragement for many. I'm on the clinical trial at UC San Diego with GA101 and ABT199. Both drugs have been absolutely fantastic for me. I'll end the ABT199 in Dec2015 and ended GA101 June 2015 Great picture !! It's a great time for so many wonderful new drugs for us.
Hi Joe! Fellow western suburban myself - did clinical trial with Dr. Ma at Northwestern last year - July - Dec 2014 - for CLL vaccine. Who is your doctor there? Just curious. Glad you're doing well and here's hoping for a long remission. ABT-199 has been showing a great deal of promise so I hope it holds out for you.
Dave, Thx for msg. I also see Dr Ma. My initial journey started with Dr Rosen @NW in 2007. I have an appt and CT's on 9/3. Were or are you on the ABT w/Rituxan trial?
Joe - I'm not in treatment now... still W&W. DX in Oct 2011 and switched to Dr. Rosen several months after diagnosis. I really liked him - very good doctor - but Dr. Ma is great, very patient, answers lots of questions and seems very knowledgeable.
May need treatment this year or next - we'll see at the next quarterly visit. Depends on my platelets which are right at borderline. ALC has steadily climbed from 11k to about 65k last visit but did taper and drop a bit during the vaccine trial. IgG was 600 (range 700-1600) and IgM was 20 (range 40-230) so they are low too but so far no real infections or sickness (knock on wood). So treatment would be driven by those things not the ALC - Dr. Ma said it can go up to 500k or 600k in some people with other good numbers.
So if I need treatment I'd like to consider something like ABT-199 if its available. I think I would be considered treatment naive though, so we'll have to see what is available for me at that time.
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