I am emailing from the Kafe Kerouac on High St. in Columbus OH on the ending of my 7th year for successful containment of my CLL with PCI-32765 (Ibrutinib/Imbruvica). It is a bittersweet anniversary in the knowledge that it has also been just 2 days past 10 years ago that our community lost P.C. Venkat the CLL patient/husband of Chaya Venkat who together gave so much to so many. P.C. never had the option of the new KIs (Kinase Inhibitors) like Ibrutinib that has been such a game changer in the treatment of CLL and for me. Chaya has most generously continued to keep an active archive of all her knowledge and perspectives online. Much of the material is highly relevant today and beautifully written with the lay patient in mind. Chaya’s selfless work on CLL/SLL can be found by clicking clltopics.org and or updates.clltopics.org
With today’s triple scans I am over 30 CTs in my CLL journey and positively radiate good health😆 I have been tracking efforts to develop super sensitive and accurate blood tests that promise to detect all cancers way before they have a chance to present with clinical symptoms. The company Adaptive Biotechnologies's ClonoSEQ assay was on my radar and I just became aware of more recent progress in achieving that goal which has the potential to replace many scans. The focus of this article is on lung cancer but other cancers to include blood cancers have had “sub-study” info presented at ASCO 2018.
A salute to the considerable progress in treatment efficacy and safety in the ten years since the passing of P.C., to the increased number of survivors, to the work ahead and to all of the good souls we have lost along the way.
Blood test shows potential for early detection of lung cancer - Dana-Farber Cancer Institute | Boston, MA
Thanks for this very illuminating post WWW. I’m so glad for your continued ‘successful containment’ and good health, and you’re right in saying so much has changed on the CLL landscape in those 10 intervening years since Chaya’s beloved PC died (and so many other good people too). I found myself reading this article again the other day from Chaya Venkat and readily admit it made me cry like a baby! Worth a read for newbies not familiar with her dedicated work and commitment to the cause.
If anyone ever hears about Chaya Venkat writing anything else at all, I'd be interested in reading it. She wrote in such an accessible, understandable style that I never seem to attain myself.
Thank you WWW for your heartfelt tribute to Chaya and P.C.. CLLTopics and my communications with Chaya provided critical support to me as I was learning about CLL so many years ago.
Wayne, thanks for reminding us of P.C.’s great contribution to our cause. She is certainly a special lady.
Also I wanted to ask if Dr. Byrd has ever mentioned anything in the works to try to “ease over” to MRD negative those of us long term Ibrutinib users with minimal residual disease? I am seeing him in August and will be asking.
I do not get to meet with J.B. since I have been in a stable remission MRD+ (Minimal Residual Disease with small residual monoclonal B cell population). I am a boring patient and content mostly to be so. That said I ask every time I go for monitoring what plans might be afoot to get us really clean. Nothing to report and my probing about the rumors of CAR-T coming to OSU indicates that is also on hold for now. Advances and choosing the right company with best techniques for optimal CAR-T are still being deliberated by Dr. Byrd.
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