Wednesday, May 27, 2015
Monday, May 25, 2015
Dr. Wiestner on Novel Therapies for CLL (chronic lymphocytic leukemia), Oral versus IV therapies, Idelalisib plus Chemo-immunotherapy Update and my Lingering Cold
I wonder if Dr. Byrd will add an antibiotic and chide me for treating myself, always an ill-advised choice.
Wednesday, May 13, 2015
Use of CME (Continuing Medical Education) to impact self-reported changes in the evaluation and management of anaemia in geriatric patients: An important topic for those of us with CLL (chronic lymphocytic leukemia)
Monday, May 11, 2015
ASH 2014: Professor Hillmen Discusses the Trials Acceleration Program for CLL (Chronic lymphocytic leukemia)
As we have discussed extensively in the issue of equipoise and crossovers, trial designs must reflect the needs of the patients.
Saturday, May 9, 2015
ASH 2014: Dr. Kipps Explains ROR1 and how CLL (chronic lymphocytic leukemia) is really treated in the Community
Thursday, May 7, 2015
Three Year Anniversary on Ibrutinib for my CLL (chronic lymphocytic leukemia)
On May 7, 2012, I swallowed my first three battleship grey pills of PCI-32765, later to be known as ibrutinib and finally Imbruvica when approved by the FDA for relapsed/refractory CLL in February, 2014. For us early adapters, most of whom like me, are still doing well in the subsequent extension trial, it is still the same grey pill and it is still called PCI-32765.
Clinical Trial NCT01217749 or PCYC-1109-CA out of Ohio State University (OSU) was a phase 1b/2 trial mixing the then very new BTK inhibitor with the then newest antibody, ofatumumab. I was in the last of three cohort. My group received the monoclonal antibody first so I actually started the trial a few months before I got to the ibrutinib. Details are described here.
Turns out that my cohort did the poorest as a bunch. Better to use the oral signal blocker first or even simultaneously to empty most of the cancer cells out of the marrow and nodes where the antibody can pick them off with no interference from their microenvironment enablers. That's why we do trials: do figure this stuff out.
But statistics predict for groups and here I am three years later in a deep deep remission. My absolute lymph count is at the low end of normal at 1000 and only 0.8% of those cells are clonal. If we do the math with just a few calculations we figure out that I only have 8 cancer cells in each microliter of blood. That not bad for someone who has a complex karyotype, 17p and 11q deletions, ZAP 70+, unmutated, CD38+, and a failed transplant.
Excellent disease control and a very deep remission, but not MRD negative. And certainly not cured.
For that elusive cure, I and most CLL patients will need a cocktail, preferably of target therapies. Fortunately some researchers agree and such trials are opening up.
During these last three years my blog has morphed from talking about my ups and downs in managing my CLL into a more universal story about the changing research and treatment paradigms in our disease.
Our newly launched nonprofit's CLL Society website: http://cllsociety.org will increasingly be taking on that educational role and my blog will return to being more my personal journey and the place for me to vent and pontificate.
Just this week, our website has several new articles: an article on the WHO statement on clinical trials, the news about the breakthrough therapy designation for ABT-199 or venetoclax for my fellow 17p deleted patients, and two cool interviews with Professor Roberts from Melbourne, part of our conference coverage, which were done at ASH 2014. Dr. Roberts talks about the mechanism of action of and the early result with venetoclax or ABT-199, a drug that he helped develop in Australia.
Every Monday, Wednesday, and Friday we will be adding new videos and articles, so check back frequently. Already on some days, the one month old http://cllsociety.org is helping more folks affected by CLL than this venerable blog.
I have been asked by pessimists and worriers: How long and deep will the CLL Society's efforts at education, support, news, and advocacy continue?
The answer is: As long as there is the need and the support for what we are doing, we will keep going.
Realistically, we desperately need to staff up in order to keep going at this pace and to expand what we are already doing. We have big plans that demand more than any one or two people can do, but we are just starting up and I am confident we will soon have the resources we need.
We are all in this together.
Tuesday, May 5, 2015
World Health Organization Calls for Results from All Clinical Trials to be Reported: An Important Concern for more than just CLL Patients
Betsy also has a strong oncology and patient education background. Please take a look at the article she wrote on the WHO recent push to ensure we hear the results of all clinical trials. No longer should negative results be buried and never see the light of day.
Please consider her commentary here on their public statement posted here, with a link to be found in our clinical trial section of our nonprofit CLL Society's newly launched website. Information on clinical trials will be a burgeoning section of our new website over the next several months.
You may find also more of interest in the many articles we used for our launch and in the new video material from ESH 2014 and ASH 2014 that will be posting every Monday, Wednesday, and Friday on CLLSociety.org until ASCO. As usual, I include my analysis, references, and summary.
We welcome your feedback through our contact link. Let us know what you like and what is missing.
We are all in this together.