Recent CLL News!
Dr. Stamatopolous is one of its directors and in these short videos he talks about ERIC in general and its first big meeting. He then discusses his research on the “cognitive dissonance” we all know so well when we are diagnosed with an incurable cancer and then told we need no treatment. Next he explains the importance of IgVH testing and how ERIC and the CLL Society are working in different ways to improve patient care.
- CAR-T therapy is a great choice for the right CLL patient and now there are 28 sites across the USA offering the trial with JCAR017 including my doctor, Dr. Tom Kipps at UCSD. Read more.
- Designing the right trials for all patients takes careful planning, deep understanding of where the research is moving and also what the patients need and want. Dr. Wierda discusses his trials at MD Anderson Cancer Center. Watch the interview.
- Next in importance to controlling our CLL is rebooting our immune system. Dr. Wiestner from the NIH discussed his research on improving our immunity from ASH 2018 and much more. The CLL Society is particularly interested in this area of research. If you can help, please consider a donation. Watch the interview.
- In no particular order, Dr. Koffman listed some of his personal highlights from the 3 day iwCLL biannual meeting in Edinburgh, Scotland. Many more interviews to come.
- Our Third 2019 issue of The CLL Society Tribune has just been released! This quarter’s issue brings you the latest news, answers to your questions from our Medical Advisory Board, research, stories, and creative efforts shared by patients and caregivers.
- Dr. Wiestner of the NIH discusses the importance of acalabrutinib’s ability to “occupy” and inhibit BTK to control CLL. Watch the interview.
- The large trial that showed that ibrutinib plus rituximab was superior to FCR for frontline treatment of younger CLL patients was arguably the biggest news at ASH 2018 and has been the research news that we covered most deeply and broadly. This week, Dr Neil Kay, a co-investigator adds his perspective in our ASH 2018 interview. Watch the interview.
- Our own director of the CLL Society Support Network, Terry Evans has been instrumental in helping establish and train facilitators for over 30 support CLL Society groups in Canada and the USA. CURE magazine wanted to hear his story. You can read the interview here.
- Dr. Furman discusses how he decides on what single drug or combination of drugs to use to treat CLL based on all the research being reported at ASH 2018. Watch the interview.
- CLL is directly killing fewer of us, but the complications of our decreased immunity remain a major risk for life-shortening infections and second cancers. In my ASH 2018 interview, Dr. Kay shares his research on the source of this problem, the bone marrow. Watch the interview.
- The trial that compared FCR to ibrutinib and rituximab for treatment naïve, non 17p deleted patients was the biggest news at ASH 2018. Here is a fresh perspective from Dr. Kay, one of the researchers. Watch the interview.
- At ASH 2018, Dr. Roeker discusses the early data from the CORE study that gives us a glimpse at why it is important to have a CLL specialist on your team. Watch the interview.
- Dr. Nabhan left direct patient care and interventional research to see what other questions he could answer and what other ways he might help. In some ways, I have done the same, so this ASH interview was personal – Dr. Koffman.
- We need to know the total cost of therapies, but it is remarkably hard information to get. Dr. Nabhan researched the cost of venetoclax versus chemotherapy or chemo-immunotherapy. Watch the interview.
- New drug approvals are too lengthy and expensive. At ASH 2018, Dr. Maddali discusses how this is changing.
- At the EHA (European Hematology Assoc) Annual Congress in Amsterdam in June 2019, Dr. Koffman was interviewed by EHA TV for their educational purposes concerning his CAR-T experience.
- TEST BEFORE TREAT Make sure your doctor does predictive/prognostic testing. Evidence pointing to a need to educate about this is presented in this ASH 2018 video interview with Dr. Anthony Mato. Download our TEST BEFORE TREAT one-pager for you and/or your doctor.
- Patient Reported Outcomes (PROs) should be part of all drug development from the earliest trials to what’s on the label. At ASH 2018, Dr. Nabhan and Dr. Koffman talk about how we are falling short.
- This is really important: patients are getting the wrong care and not only is it not helping and often hurting them, it even costs more. See Dr. Koffman’s interview with Dr. Nabhan.
- Acalabrutinib, a potent targeted oral therapy moved one step closer to approval for CLL with the FDA’s granting Breakthrough Therapy Designation on Aug. 14, 2019. Read more along with a link to the press release.
- It is only by understanding how CLL cells grow and resist treatment that we can develop successful therapies. Dr. Kay has done basic science research on the bone marrow stromal support of CLL and in doing so has learned a novel approach that might be able to improve treatment and it’s already in a clinical trial. Watch the interview.
- Dr. Hill gives us the physician’s perspective on biosimilars.
- Dr Koffman’s CAR-T Blog: I lost my friend Andreas yesterday after a noble and difficult struggle with two cancers.
- Dr. Koffman’s take on Ibrutinib and Rituximab (IR) is Superior to Chemo-immunotherapy (CIT) in CLL: Big News, or is it really? And did they get it right?
- Lorna Warwick is the CEO of the Lymphoma Coalition. At ASH 2018, we had two discussions, the first about the important work of her international nonprofit, the second about the research they were presenting at ASH 2018 on the value of being an informed patient, a familiar theme to our readers.
- Giora Sharf is a CML friend and advocate who lives in Israel who interviewed Dr. Koffman about his medical journey and the founding of the CLL Society last December in San Diego at ASH 2018. We are happy to share the update that Dr. Koffman remains in a deep remission now 16 months post receiving his living drug. Here is Dr. Koffman’s interview with Giora.
- The Cancer Moonshot lead by VP Joe Biden started with such promise, but it is on hold now due to VP Biden presidential aspirations presenting ethical concerns. Read Glenn Sabin’s interactions and opinions with the Moonshot team here.
- CAR-T therapy in CLL is both challenging and promising. Dr. Siddiqi presents the positive early results with Liso-cel or JCAR-17.
- While biosimilars hold the promise of reducing cost, realizing that can take a long time. For more on the recent approval of a biosimilar to rituximab, please see what our CLL expert pharmacist Tom Henry had to say.
- Professor Hoffbrand gives us a remarkable history lesson on the last 50 years of CLL treatment. His metaphor of weeds and flowers is not to be missed.
- CAR-T was been in the news. Please take a look at Larry Marion’s introduction and link to Pulitzer Prize winner, Dr. Mukherjee’s overview and commentary in the New Yorker.
- The CLL Society is periodically asked to help recruit CLL patients for marketing surveys. For more information click here.
- Tired? You are not alone. See Dr. Koffman’s latest blog post.
It may not be enough to just target the cancer, we might need to target where it lives. Dr. Yucai Wang looks at these issues in CLL and Richter’s Transformation.
The Transcend 004 trial offers a CAR-T living drug very similar to what Brian Koffman received. Learn more.
- A Phase 1/2 Study of Oral LOXO-305 in Patients With Previously Treated CLL offering a novel drug that non-covalently blocks BTK is now open.
- Enjoy Dr. Koffman’s interview by an Italian reporter here.
- Welcome to the Second 2019 Issue of The CLL Society Tribune!
- While in Dublin to speak for CLL Ireland on the occasion of their Annual CLL Information Day, Dr. Koffman was interviewed on the popular Irish radio show, FutureProof with Jonathan McCrea concerning his CAR-T experience. Listen to the PODCAST.
- Richter’s Transformation is when CLL turns bad. More research is needed to improve outcomes. Dr. Yucai Wang from the Mayo Clinic in Rochester, MN shares his important findings at ASH 2018.
- PI3K inhibitors have been largely neglected in CLL due to the tremendous success of ibrutinib, a BTK inhibitor. Both classes of drugs block the B cell receptor and are very effective in controlling CLL, but the side effects are different. At ASH 2018, Dr. Davids shares the latest encouraging research on duvelisib.
- Too often outcomes in the real world, especially far away from academic centers are not as good as they are in trials. Dr. Roeker at ASH 2018 shares that the real world outcomes with venetoclax were similar to those found in the clinical studies. This is also important as Dr. Roeker is part of a new generation of young CLL researchers that we patients need to support and encourage. Read more details on this promising news and Dr. Koffman’s commentary here.
- Having undetectable CLL in your blood or bone marrow is increasingly a realistic possibility. When and how it is important is the topic of my discussion with Dr. Wierda at ASH 2018.
- There are many powerful combinations of drugs with and without chemotherapy being studied in CLL that offer the promise of being able to stop there with no detectable cancer. At ASH 2018, Dr. Koffman interviewed Dr. Lamanna for her overview of all this research.
- FDA approval of the combination of venetoclax and obinutuzumab for treatment naïve CLL patients marks the first fixed duration non-chemotherapy options. The deep responses and clinically significant advantage in terms of progression free and overall survival are hopeful indicators that this will be a serious alternative frontline and perhaps the first of many innovative non-chemo combinations.
- If ibrutinib is good at stopping CLL from growing and venetoclax is good at killing CLL cells, then Prof Hillmen asks the question: What happens when we combine them? He shares the exciting results of the CLARITY trial in Dr. Koffman’s ASH 2018 interview here.
- Acalabrutinib is a newer BTK inhibitor that is now proven to prolong life for previously treated CLL patients. It is already approved for mantle cell lymphoma, but not yet CLL, but can be approved off label.
- Dr. Mato is researching a new combination of three novel agents that both directly target CLL and Richter’s Transformation and boost the immune response to our disease.
- Dr. Kipps at ASH 2018: “We may have an answer to patients who are resistant to the new therapies.” An update on the antibody that blocks the ROR1 protein.
- High risk CLL is known to more likely become resistant to any therapy. Despite much better responses with the novel targeted treatments, relapses can happen. This trial tries to prevent that from happening by harnessing a smart combination of novel targeted drugs and potent immunotherapy. You can read Dr. Koffman’s Q&A with Dr. Wiestner about the details from the NIH here. Remember that trials at the NIH have all the expenses covered.
- Venetoclax works amazingly well for most CLL patients but for those who develop resistance options are limited. At ASH 2018 in the first part of a longer interview, Dr. Kipps discusses way to reduce the risk of developing resistance and sets the stage for next week’s post offering new options targeting ROR1.
- It is with a broken heart I share the news of the passing of a giant, a friend and a true CLL Hero, Chris Dwyer.
- At ERIC 2018, Dr. Kipps shared his enthusiasm for the use of antibodies to control CLL with a special focus on ROR1
- Welcome to the First 2019 Issue of The CLL Society Tribune
- It’s been one year since Dr. Brian Koffman received his CAR-T therapy in Seattle, and what a year it has been. In his CAR-T blog post, Brian shares his good news.
- At ASH 2018 there was a plethora of important CLL data that should change how we treat CLL going forward. Dr. Siddiqi provides an overview of where we stand now.
- FDA places a partial hold on all venetoclax clinical trials for multiple myeloma (MM) patients
- At ASH 2018, Dr. Furman discusses the possibility of being able to treat CLL with a fixed duration of novel oral agents.
- Dr. Maddali brings the perspective of an executive and scientist in the laboratory industry to addressing biomarker testing in CLL.
- Dr. Hallek discussed how two of the most important trials presented at ASH 2018 are changing how we treat CLL towards using more targeted novel therapies alone and in combination
- Venetoclax Will be Paid for in Australia
- Expert Access™, the CLL Society’s no-cost expert 2nd opinion program, is the subject of this video with Dr. Nicole Lamanna.
- ASH 2018: Seven years of positive ibrutinib data for CLL presented by principle investigator Dr. John Byrd
- CMS approves CAR-T therapy payment, but with significant strings attached
- We know that blocking BTK helps control CLL. Dr. Byrd shares the results of his trial of the second generation BTK inhibitor, acalabrutinib in treatment naïve CLL patients.
- PI3K inhibition is a powerful way to stop our CLL cells from growing. Dr. Pagel share some exciting research from ASH 2018 on this effective class of drugs with advice about how to best handle potential side effects.
- Though I am retired so I can focus exclusively on the CLL Society, I will always be a family doctor. Here are my reflections on this life changing transition.
- Dr. Rick Furman discusses the changing role of clinical trials in CLL in the era of novel therapies
- Dr. Matt Davids of Dana Farber Cancer Institute and Harvard Medical School in Boston, MA was interviewed as one of the co-authors of our research presented at ASH 2018 for the Journal of Clinical Pathways (JCP). Read the interview.
- Dr. Jennifer Brown from Harvard shares some of the subtleties of correctly diagnosing CLL in our interview from ERIC 2018 in Barcelona.
- ASH 2018 had so much important CLL research, but perhaps the most important abstract was the ECOG trial that compared FCR to ibrutinib plus rituximab (IR) for frontline treatment in chronic lymphocytic leukemia. The strong superiority of IR has major practice changing implications that we will be reporting on in this interview with Dr. Stilgenbauer and in other articles over the next weeks.
- Welcome to the Fourth 2018 Issue of The CLL Society Tribune!
- There are many powerful medications for CLL and even more potent combinations. In Dr. Koffman’s ASH 2018 interview with Professor Hillmen we learn that the timing of when the drugs are given may determine their efficacy.
- Dr. Brian Koffman shares his bittersweet retirement from family medicine in order to focus solely on the CLL community. Read about this transition in his blog post.
- Day 3 at ASH 2018 was a wonderful day full of great info culminating in reaching a CURE 2018 CHRONIC LYMPHOCYTIC LEUKEMIA HERO AWARD: ASH 2018 DAY 3 UPDATE
- Day 1 at ASH 2018 is in the books. Here is my quick end of the first day wrap: ASH 2018 Day 1 Update
- Combination therapies have traditionally fared the best in preventing cancer from mutating around a single drug’s attempt to block its growth. While chemo cocktails have proved enormously helpful in many other cancers in chronic lymphocytic leukemia, their role today is very limited. However the good news is that they may soon be replaced by promising combinations of oral targeted therapy. The early CAPTIVATE trial data from ASCO 2018 that presented the exciting finding of the combination of ibrutinib and venetoclax (I+V) in the frontline setting in CLL.
- We all learn different ways. Our friends at SILLC, the French charity that helps CLL patients produced this fun and informative introduction to CLL or chronic lymphocytic leukemia (and Waldenstrom’s Macroglobulinemia) in comic book form. You might want to compare and contrast with our CAR-T comic book. Different styles but similar goals to make us all smart patients.
- In the third and final section of my interview with Dr. Utkarsh Acharya we hear about unanswered and his sense of the future for CAR-T and related therapies
- Prime Education in partnership with the Leukemia & Lymphoma Society (LLS) and The CLL Society has just posted two new FREE archived webinars! Click here for more information!
- Dr. Utkarsh Acharya answers three more questions about the challenges, sources of pride and frustrations of being a doctor caring for CAR-T patients so early in the therapy’s development
- At the first ERIC meeting in Barcelona, Dr,. Brian Koffman had a chance to interview one of the researchers, Dr. Cameron Turtle, involved his trial in Seattle at the SCCA/Hutch
- At the first ERIC meeting in Barcelona, Dr,. Brian Koffman had a chance to interview one of the researchers, Dr. Cameron Turtle, involved his trial in Seattle at the SCCA/Hutch
- I remain cancer free today due a remarkable team of doctors who have dedicated their life to researching and improving the safety and efficacy of CAR-T therapy. This week is the first part of my interview with one of the best young physicians in that field, Dr. Utkarsh H. Acharya. Also this week is my blog post on my great news that there was no detectable CLL in my my bone marrow at my recent 6 month restaging.
- Watch and wait is the classic approach for all newly diagnosed CLL patients, but in the era of new targeted therapies, does it make sense to intervene early in high risk patients. This new trial for early stage high-risk CLL patients will examine that question. Enrollment is open now.
- For patients such as myself who progress on ibrutinib have limited options. Commercial venetoclax, duvelisib or idelalisib are all good possibilities, but so are clinical trials such as this one using the investigational drug vecabrutinib.
- Dr. Brian Koffman was interviewed in Prague at the CLL Advocates Network Horizon Meeting about what was critical for international advocates to understand about CLL
- The Third 2018 Issue of The CLL Tribune Has Launched
- Duvelisib approved for relapsed and refractory CLL
- ASCO 2018: Dr. John Pagel shares CLL highlights from ASCO (American Society of Clinical Oncology) Annual Meeting and there are very promising positive results.
- A US-Based Survey: The Experiences of 1147 CLL Patients
- Blood Cancer Awareness Month
- Watch and Wait
- Swimming, joy and sadness and MRD negativity
- Dr. Wierda on CLL patients that progress on ibrutinib
- Ibrutinib’s Approval History and Its Use as Frontline Therapy for CLL
- CLL/SLL patients in the US can advance research NOW with just a few clicks!
- ASH 2017: Dr. John Pagel on Quality Improvement in CLL (chronic lymphocytic leukemia)
- Stan Kurtz and his team, with help from so many of you – did it! He swam the Catalina channel and raised over $25.000 for the CLL Society. We so ever grateful. Let’s not stop there. If you have already, please consider a gift of $22, one dollar for each mile he swam. Or more! Now I need to get some sleep. Thanks https://www.gofundme.com/swimcatalinaforleukemia
- ASH 2017: Dr. Adrian Wiestner on Resistance Mechanism in CLL (chronic lymphocytic leukemia)
- ASH 2017: Dr. Thomas Kipps on the ROR1 Antibody, Cirmtuzumab
- Dr. Koffman Reporting from EHA 2018
- ASH 2017: Dr. Adrian Wiestner on Combination Therapies for CLL
- Accredited Live Webinar: Managing Toxicities of Novel Therapies and Coordinating Care for CLL/SLL and FL Patients
- Stan Kurtz/ Swimming Despite Loss of Father-in-law, So That Others Can Get Best Care
- Accredited Live Webinar: Real-world Patient Experiences & Evidence-based Treatment Strategies in CLL/SLL and FL
- Cancer Drug Parity Act – HR 1409 – An Awakening