I just blogged on how my recent blood work and bone marrow biopsy looking for MRD status could have a big impact on everything. See: cllsociety.org/2020/01/very...
At iwCLL 2019, Dr. Kipps discusses how he approaches first CLL treatments with a heavy focus on fixed duration venetoclax based therapies. Read: cllsociety.org/2020/01/iwcl...
Stay strong. We are all in this together.
Brian
I'm trying to stay strong but psychologically it's been really really hard.😢
It is hard, but I try to under react to everything. Friends with CLL can help. Let me know how I might help.
Thank you Brian i appreciate that very much sometimes it just gets to me really bad and i cry all day.
Dear Sushi
I really appreciate your raw honesty on the forum. You express what many of us feel. I was diagnosed in October and have been pretty much spinning ever since. I have read many of your comments and found them helpful. So thanks 
The good news though is that I have just recently found a way to reset my system. I started meditation again and it has grounded me and calmed me down again. What a relief to be able to find a way to break out of that worry loop.
I still spin when faced with CLL reminders but for shorter periods of time. Out of interest, I practice Vipassana mediation (one can attend a ten day retreat to learn more about it). Working on making it a daily practice now via Insight Timer app.
Knowing how important it is to avoid stress with CLL, I now see meditation as medicine.
Sharing this in case it is helpful to you.
Thanks again and as Brian says... we are all in this together 💛
Thank you, i only post what's on my mind and what I'm going through at the moment sometimes it's with tears flowing down my eyes. It's what makes me feel better and releases my stress. And everyone always listens to me and i get the best advice ever. (Emotionally it's what I've been battling with this monster since diagnosis) you're very new too cll within time it will ease, especially with the meditation. Thank you for the tip I'm going to look into that. (Vipassana meditation) where do u go to attend this retreat? I know i shouldn't but stress is what's getting to me lately. Maybe from not accepting cll and the fact that i might need treatment soon. Regards Lydia😊.
It's okay to be down at times. Try not to get stuck there. Everything passes.
Thank you i appreciate this very much it makes me a stronger person😊.
It really is hard to stay strong some days. Hang in there. Some days are better than others. Some days stink and some are really good. Hoping tomorrow will be bright and sunny for you.
Thank you it's hard to get out of the rut, but this is not everyday but when it hits, it gets me really bad.
I hope your results come out clear and you beat this terrible disease. Best wishes.
THANKS!
Long may your U-MRD last! Keep up the great work, loving reading everything about fixed duration treatments especially with result driven end pts. Thank you!
Mindy
That was a most informative and well written update Brian. Well done and good luck on your test results.
This is all good news so far Dr. Koffman. You are so brave and you are leading the research and treatment possibilities for the rest of us. Praying that all of your results will turn out well and you can confidently stop the Ibrutinib. Wow, you may not recognize yourself without Ibrutinib. Your hair may turn dark brown and curly!
We will all be waiting to hear how everything goes,
Janice
Thank you Brian,
Yes, I hope to hear about U-MRD6 more and more....starting with you in a week or two, what an incredible advance not only in the testing practices involved in U-MRD6 but also the success of CAR-T
I understand your desire to under react, after the many false dawns, but this could just be the most amazing news.
Fingers crossed that firstly you get to U-MRD6 but also that you finally get to have your own healthy B cells back again.
Your CLL journey has been long and eventful - but hopefully near to destination 'Cure City'.
I meanwhile, have just been given the keys to my 'CLLmobile' and off I ride in to the sunset of the unknown. So Dr Kipps 1st line VenG treatment is of massive interest. The idea of skipping the whole traffic filled motorway ordeal with its frequent BMB pit stops...and instead effectively jumping on a high speed train and waking up at Cure City .....sounds just fine.
All the best
headjog
Brian, what do you think of patients staying on Ibrutinib indefinetly after reaching UMRD4 on I + V ? I was thinking of this, If I get to UMRD4 it won't be until 18mos at the earliest on a 2 yr trial. Makes me think I won't go much deeper than that. I tolerate Ibrutinib well and I wonder if I should just stay on it.
john
Best of luck to you Brian. You do look great as Kipps said. Kipps brought up an issue I've been wondering about. V+O vs. V+R in terms of reponse and duration.
Thank you for posting this. I am also a patient at UCSD with Dr. Choi who works with Dr. Kipps. I have been on W&W for over eight years but my numbers are not looking great and I’m possibly heading towards treatment soon. I have my appointment with Dr. Choi February 6 so I’m trying to stay positive. My last visit he discussed V+O as possible treatment for me. Fortunately I have no other illnesses. I feel like I am in really good hands at UCSD with Dr. Choi.
This is a hideous disease and I have a good days and I have bad days just like I read everybody else does too. Sending out positive loving energy to everybody suffering with CLL.
Sally
Thank you Brian for keeping us in the loop with all the new combinations of drugs, which might be the way for us to cure eventually.
Good luck to you on your journey 🤗
Dana
😊😊😊😊😊😊
Hello Brian
As you know everyone is different, but "under react to everything" helps, I am sure. Age has a lot to do with one's state of mind. I am 72 and diagnosed at 70. I am now about one year post treatment and feel great. Because of my age, I feel blessed to have CLL instead of many other health problems I could have. I think helping others is a real blessing and you will be well rewarded. Great article. Blessings.
Diagnosed in December 2019, So much to learn. This is interesting paper on some options for treatment,
Frontline CLL Options: An Embarrassment of Riches?
Brad Kahl, MD
Professor of Medicine
Washington University School of Medicine, St. Louis, MO
Published on: December 26, 2019
Click image to enlarge
Figure detailing ongoing trials focused on time-limited therapy for chronic lymphocytic leukemia
In the past year, four highly important studies have been published each evaluating novel targeted agents for not-yet-treated chronic lymphocytic leukemia (CLL).1-4 Three of the trials tested ibrutinib-based combinations against standard immunochemotherapy. What made these trials important was the fact that ibrutinib went head-to-head against highly effective standards, rather the stacked-deck approach of comparing to an outdated regimen of chlorambucil monotherapy. The fourth trial evaluated a venetoclax-based combination. Let’s briefly review the four trials and synthesize what we have learned.
The ILLUMINATE trial randomized older patients with CLL to either ibrutinib-obinutuzumab or chlorambucil-obinutuzumab. The obinutuzumab and the chlorambucil were administered for six months while the ibrutinib was administered indefinitely. The likelihood of remaining in remission at 2.5 years was substantially higher in the ibrutinib arm (79% vs. 31%). The U.S. intergroup trial A041202 randomized older patients with CLL to either ibrutinib or ibrutinib-rituximab or bendamustine-rituximab (BR). BR was administered for six cycles while ibrutinib was administered indefinitely. The likelihood of remaining in remission at two years was substantially higher in either ibrutinib-containing arm (87% vs. 74%). The addition of rituximab did not enhance the efficacy of ibrutinib. The US intergroup trial EA1912 randomized younger CLL patients to either ibrutinib-rituximab or the fludarabine-cyclophosphamide-rituximab (FCR) regimen. FCR was administered for six cycles while ibrutinib was administered indefinitely. The likelihood of remaining in remission at three years was substantially higher in the ibrutinib-containing arm (89% vs. 73%).
Take homes? The Alliance trial teaches us that rituximab does not seem to improve the efficacy of ibrutinib. Whether this lack of benefit also holds true for obinutuzumab is unclear, as none of these trials addressed that question. However, a separate trial (ELEVATE) presented at the 2019 ASH Annual Meeting does suggest that obinutuzumab can increase the efficacy of Bruton tyrosine kinase inhibitors. Going forward, it seems reasonable to incorporate obinutuzumab with ibrutinib in the frontline setting.
Another teaching point from these three trials comes from a breakdown in outcome data by IgVH status. Immunochemotherapy typically performs far less well in IgVH unmutated CLL, and ibrutinib-based therapy is substantially more efficacious in this subgroup of patients. However, when analyzing the data in IgVH-mutated patients, the immunochemotherapy options perform very similarly to ibrutinib-based therapy, making these options worth discussing with IgVH-mutated patients.
A potential drawback to ibrutinib-based therapy is the need for continuous therapy. While ibrutinib is generally well tolerated, some patients experience vexing chronic toxicities, which can impair quality of life. Additionally, it is expensive, and the monthly copays can create financial strain. For these reasons, many research groups have been anxious to develop time-limited therapies using novel targeted agents, which brings us to the fourth trial. The CLL 14 trial conducted by the German CLL study group randomized older CLL patients to either venetoclax-obinutuzumab or chlorambucil-obinutuzumab. The obinutuzumab was administered for six months in each arm while the venetoclax and the chlorambucil were administered for 12 months. The likelihood of remaining in remission at two years was substantially higher in the venetoclax-obinutuzumab arm (88% vs. 64%).
So, when you see your next patient with CLL who is in need of frontline treatment, what should you offer? I find myself describing ibrutinib-obinutuzumab and venetoclax-obinutuzumab, attempting to address the pros and cons of each. It gets even more complicated for the IgVH-mutated patients, as I feel obligated to also describe an immunochemotherapy option. Often patients will declare their preference, and since none of these options have been compared head-to-head, I am happy to let patient preference break a tie.
One way to simplify things is to participate in the two ongoing U.S. intergroup trials building off the success of the recent studies. EA9161 is designed for younger CLL patients (NCT03701282). The standard arm is ibrutinib-obinutuzumab given in the usual fashion. The experimental arm is a triplet of ibrutinib-obinutuzumab-venetoclax given in a time limited fashion. AO41702 is designed for older CLL patients and is similar in that it uses the same control arm (NCT03737981). The experimental arm uses the same triplet drug combination, but therapy discontinuation is based upon the results of planned minimal residual disease testing. Both trials are open and accruing briskly.
It is wonderful to see the U.S. cooperative group system working so well to both improve outcomes for CLL patients while establishing cost-effective and patient-friendly treatment paradigms.
My husband is on that regiment of drugs currently. He has been on them for 10 months and his blood work comes out in normal ranges. His Dr. ,John Pagel of Swedish. told us to stay on these drugs for 15 months, but he also stated that it was up to us. Should he get off of them at 12 months? We will be moving down to Oceanside next year to be closer to family and Dr. Kipps is our first choice.
Dr Brian wish you all the best with the bmb results. You deserve such a cure more than anybody else. Best Regards.
Thanks so much for posting this!
