My CLL relapsed last year in a very rare form: presentation in the central nervous system, brain lining, and eyes. Partial blindness and localized seizures were some of the problems. Since this presentation is so rare, there is no standard of care.
My CLL specialist teamed with other specialists to create a customized treatment regime -- cytarabine (a brain cancer chemo) infused into my spinal column plus good old fashioned ibrutinib. Ibrutinib penetrates the blood-brain barrier and works in the central nervous system as well as peripheral blood.
Nine months later, there is no observable active disease in my eyes. Spinal taps and MRIs are negative. My blood numbers are now completely normal. I'm tolerating ibrutinib easily.
Last week, my specialist, Dr Bruce Cheson, told me I'm now back in remission. I'll stay on ibrutinib for as long as it's effective. The docs will monitor my CLL through bloodwork and observation of my retinas.
I'm ecstatic. That was a very scary time. No one knew at first what the problem was nor what to do about it. Now I'm allowed to drive again, back at the gym, and feel great. Quality of life is excellent. Wahoo!
Many thanks to all of you on this list who supported me at the onset of my rare presentation, especially Chris of CLL Canada. You're all wonderful. Thank you for being there for me and for each other.
Geoff
Washington, DC
Written by
Eagle5327
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Wow! I am thrilled for you, Geoff, and can only imagine how ecstatic you must be! This is also so encouraging for others, where treatment for CLL is especially challenging. Your story is really stunning and makes me feel so good. I am so happy for you!
Geoff, so glad for your remission! Sounds like you've really been through it and have stayed strong. Hope all continues to go very well for you. Prayers from Ohio.
Sushi, hi! I like to see your smiling photo. (-: I just got my port yesterday and will be starting FCR. Hope all is going better for you. Prayers from Ohio.
Thank you so much ohannie, good luck with the fcr i wish u all the success in your journey. Question how come you're doing fcr and not starting on ibrutinib or another med.
Eagle way to go, start living life!! Wonderful!! CLL tried to take a bigger part of you but you fought and denied it. Always great to hear these stories and inspiring to the rest of us. STAY STRONG J.R
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