Dr. Jeff Sharman on some interesting clinical trials for CLL, an important Canadian survey, and much more

This week in the Clinical Trials/The Basics section of the CLL Society website, we’ve posted an interview with Dr. Jeff Sharman where we talked about how clinical trials are developing. We also reviewed some very important things that patients should know and do regardless of whether they are being treated within a trial.
You can read a summary of our discussion and watch my interview with Dr. Sharman here. http://cllsociety.org/2016/06/dr-jeffrey-sharman-best-practices-new-cll-trials/
For Patients Who Have Been Treated with Venetoclax: Lymphoma Canada is preparing a submission for the pan ­Canadian Oncology Drug Review (pCODR) for Venetoclax for the treatment of patients with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) who have received at least one prior therapy; this includes patients with 17p deletion.You can help by completing their survey, which will provide us with the patient input required for the submission. pCODR uses this information to help them make recommendations to the provinces and territories regarding funding for new cancer drugs.You do not need to live in Canada to complete this survey. You can access the survey here. https://www.surveymonkey.com/r/PSPKRHK Consider taking the time to help out your fellow CLL patients in Canada. Thanks.
NEXT WEEK: We will be publishing the next issue of The CLL Tribune. You can look forward to:
· Reading/viewing an interview with Dr. Jeff Jones about Venetoclax from the recent EHA meeting in Copenhagen in Conference Coverage
· Read answers to reader questions by Dr. Rick Furman in Ask the Doctor
· Learn about what bone marrow does in The Basics Section
· In Beyond the Basics, find out about the ASCO sponsored TAPUR trial which is looking for new creative uses for already approved targeted therapies
· Learn new facts about CLL in the Did You Know section
· View some data from our most recent Reader Poll and share with us your opinions on CLL experts and whom you might recommend to other patients in our Ask & Tell section
In Living Well with CLL, you can read about:
o  WhyYou Should See a CLL Specialist
o  How my Support Group Saved my Life
o  I Don’t Have CLL. Yes, I Do. Now, I Don’t.
o  On Being a Novice Patient
o  May I Remember Never To Forget
Stay strong.
We are all in this together.
Brian Koffman, MD
Volunteer Medical Director of the CLL Society
http://cllsociety.org

ASH 2014: Dr. Kipps Explains ROR1 and how CLL (chronic lymphocytic leukemia) is really treated in the Community

When I had a chance at ASH (American Society of Hematology) 2014 to interview my doctor, Dr. Tom Kipps, he first talked about the ROR1 trials that has recently opened at UCSD. This has been his research passion for years and is finally in trials. So far, so good. ROR1 holds the promise to be the perfect cancer target: found on our cancer cells, including possible CLL stem cells, and not on much else.

Keeping in mind that in all likelihood, a curative therapy is going to include a biological or immune approach, so it is important to know about ROR1. I have included links to more background and the clinical trials in the article.

In the second segment of the interview, Dr. Kipps discussed the findings presented at ASH on how CLL is actually treated in the real world. Guess what! It is not according to the latest guidelines. Another reason to add a CLL expert to our team.

These two interviews can be found in the conference coverage (past years) section of the website: http://cllsociety.org

Expect video updates on the website every Monday, Wednesday and Friday for the rest of the month.

Questionable Online Advice from a Physician about CLL (chronic lymphocytic leukemia): Yet Another Reason Why We Need the Best Information

OK, class. What is wrong with the advice this syndicated doctor is giving to his inquiring patient? Here is the link to one paper's column so you can read the whole question and response.  CLL is disease of the bone marrow April 2, 2015

"DEAR DR. ROACH: I have been diagnosed with chronic lymphocytic leukemia at stage I, and I am experiencing swelling in my lymph nodes under my arms and in my neck..... — N.H. ANSWER: Chronic lymphocytic leukemia is a disease of the bone marrow, an indolent (slow-growing) type of cancer. It is called CLL when the cancer cells are mostly in the blood, and small lymphocytic lymphoma (SLL) when it is primarily in the lymph nodes. These are just different manifestations of the same disease. However, if the disease is mostly in the lymph nodes, then radiation treatment usually is used, even in asymptomatic early disease. In stage I CLL, the condition typically is watched for progression." Actually Dr. Roach is mostly correct in his definitions. CLL and SLL are the same disease with different presentations. The cancer cells are essentially identical phenotypically and immunologically. The WHO say the cancers are identical. It is a nuanced difference, but I would argue that while CLL is usually found mostly in the blood and marrow, occasionally in patients such as myself with 11q deletion, we may have near normal lymphocyte counts and little bone marrow involvement, but may present or develop massive lymph nodes, so our CLL may be "primarily in the lymph nodes".  For us, our cancer is a leukemia that behaves more like a lymphoma.  In contrast, SLL presents in the nodes and when it spoils over into the blood with excessive lymphocytes (greater than 5,000 that are monoclonal) or the blood counts drops or the marrow is heavily involved, then it is becomes CLL.  Take a look at this link for more on diagnosis. This is a subtle point and Dr. Roach is for the most part correct as are nearly all the similar online definitions by such reputable sources as LRF, so I have no fight to pick on this point. His admonition to watch (and wait) with Stage 1 disease is also sound counsel. And the rest of his discussion that I didn't excerpt on herbal therapy was thoughtful and well considered. My real concern is the statement about SLL that radiation therapy "usually is used even in asymptomatic early disease". This simply isn't the case and would come as a big surprise to many SLL patients who have happily dodged any therapy for years. There can be an argument made in the rare patient who present with a single cancerous node or cluster of nodes in the same tight anatomical location that removing it or sterilizing it with radiation is potentially curative, but this patient already has nodes in two anatomical locations, so a curative treatment is less likely. In fairness to Dr. Roach, there was one small (14 patients in stage 1 or 2) retrospective study from 1989 that showed an impressive 80% progression free survival at 10 years in stage 1 disease with the authors recommending early radiation therapy.  The results were less impressive with Stage 2 disease (two locations on the same side of the diaphragm) and not significant with more advanced disease. Radiation therapy in the absence of symptoms is certainly not routine "standard of care", especially with the demonstration of more than one site involved. If considered, it certainly needs to be carefully reviewed with a CLL/SLL expert. Moreover I suspect that the role of radiation in SLL will be decreasing rapidly with the options of new targeted therapies now available that are so darn quick and effective in shrinking our nodes. I present this case as a cautionary tale of the danger of not being abreast of the latest research and guidelines whether you are the patient or you are the doctor. Understanding the details and nuances of our disease is critical for our survival. CLL/SLL is a relatively uncommon, but complex disease that is different in each and every one of us. We all need to be treated as individuals. And the treatment options are changing very fast. Many well meaning general oncologists may be badly out of date and we need to be ready to ask for a second opinion from a CLL expert.  We all need to be our own best advocates.  We all need to be informed. That is why I and other CLL patients, caregivers, and experts have been working so hard and long to put together the only active patient driven, doctor reviewed, CLL educational and supportive website based in the USA. The nonprofit 501(c)3 CLL Society Inc. website has just been launched to meet the unmet needs of the CLL community. We aim to be the hub for all helpful reliable and valid CLL information on the web either on our website itself or through selected links to other reputable sources. Here is our Mission and Vision statement: Mission: The CLL Society Inc. is a patient-centric, physician-curated nonprofit focused on patient education and patient support. Dedicated to addressing the unmet needs of the CLL and related blood cancer communities, it explains the rapidly changing therapeutic landscape and the importance of clinical trials, supports and builds patient networks, and educates providers and patients alike. Vision:  We act to help shape a smarter, brighter future for those with CLL and related B cell blood cancers by encouraging and supporting smart patients, smart providers, smart clinical trials, smart healthcare delivery systems, and smart therapies. We are careful not to replicate the fine work of many other organizations and patient forums, but looked to fill the  gaps with searchable information, with supportive articles, with interviews with experts, with news and the latest research from all the major meetings and journals, with carefully vetted links to our reliable sites, with many useful tools such as glossaries and spreadsheets for labs and updates on clinical trials and so much more. And we are only just beginning. With the continued support of the CLL community of patients, caregivers, providers, and industry, we have big plans to fill in gaps in our information and grow in response to what the community wants.  It will be a vibrant growing site. New material will be added regularly. Please consider signing up for alerts and the newsletter.  Email us with feedback. Your support and comments will guide our future development.  Let us know if you want to write for us and we will help with editing and fact checking. After all we are all in this together. You know who I am so I think you what you will find at http://cllsociety.org robust gritty explanations of what we need to know to win in our struggles. Complex topics unpacked and explained in accessible but not simplistic terms. I will share all the news and research, good and bad. No sugar coating.  My blog will continue, but may gradually morph back to being more about my personal ongoing CLL journey. For the foreseeable future, there will be some overlap with my blog and http://cllsociety.org but eventually the website for the nonprofit 501(c)3 CLL Society will be the main source of all the new information and my blog will be where I tell my story and share my candid opinions. Stay strong. Stay in touch We are all in this together.

ASH 2012: Interview with Web Savvy Patient, Andrew Schorr

Andrew Schorr is a journalist, an advocate, and a very web savvy patient who has stared down CLL for about 16 years and it now winning his fight with myelofibrosis.

Through his helpful website, patientpower.info, he has provided a treasure trove of information for patients looking for answers.

Now he gets to be on the other side of the microphone in the hall outside the press rooms at ASH 2012. We learn from the interviewer turned interviewee about his strategies to navigate his disease. He outlines through his personal story and his decision process, the critical need for getting support from others with the disease, the primacy of expert advice, and the important role of clinical trials in saving his life.

In future posts, we will both share the interview he did of me about my ibrutinib trial.

Andrew and I have moved in the same CLL circles for several years now and I hope we keep doing it for many more to come.

Here is the interview:

Below is a photo of some of my local support group and our significant others at our holiday get-together. We don't look too bad for a bunch of patients with an incurable cancer, do we?

I would be lost without them.  If you have CLL, and don't have  support group, get one or join ours if you are local.

Getting the right doctor can save your life

This proves what I have been saying for years. You need a CLL specialist heading up your team. Odds are you will live years longer.

This is probably less true in common diseases such as diabetes or breast cancer where most providers have many such patients.

But this is sure true for CLL/SLL.

Thank you ACS and thank you my friends at Mayo. The research may be seen by some as self serving, but it is hard to argue with the numbers.

Hematologist/oncologist disease‐specific expertise and survival: Lessons from chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL)

Authors

Tait D. Shanafelt, Neil E. Kay, Kari G. Rabe, David J. Inwards, Clive S. Zent, Jose F. Leis, Susan M. Schwager, Carrie A. Thompson, Deborah A. Bowen, Thomas E. Witzig, Susan L. Slager, Timothy G. Call

Abstract

BACKGROUND:

The impact of physicians' disease‐specific expertise on patient outcome is unknown. Although previous studies suggest a survival advantage for cancer patients cared for at high‐volume centers, these observations may simply reflect referral bias or better access to advanced technologies, clinical trials, and multidisciplinary support at large centers.

METHODS:

We evaluated time to first treatment (TTFT) and overall survival (OS) of patients with newly diagnosed chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL) at a single academic center based on whether they were cared for by a hematologist/oncologist who subspecializes in CLL (CLL hematologist) or a hematologist/oncologist with expertise in other areas (non‐CLL hematologist).

RESULTS:

Among 1309 newly diagnosed patients with CLL cared for between 1999 and 2009, 773(59%) were cared for by CLL hematologists and 536 were cared for by non‐CLL hematologists. Among early‐stage patients (Rai 0‐I), median TTFT (9.2 vs 6.1 years; P < .001) and OS (10.5 years vs 8.8 years; P < .001) were longer for patients cared for by CLL hematologists. For all patients, OS was superior for patients cared for by CLL hematologists (10.5 years vs 8.4 years;P = .001). Physician's disease‐specific expertise remained an independent predictor of OS after adjusting for age, sex, stage, and lymphocyte count at diagnosis. Patients seen by a CLL hematologist were also more likely to participate in clinical trials (48% vs 16%; P < .001).

CONCLUSIONS:

Physician disease‐specific expertise appears to influence outcome in patients with CLL. To the greatest extent possible, patients should be cared for by a hematologist/oncologist expert in the care of their specific malignancy. When not possible, practice guidelines developed by disease‐specific experts should be followed. Cancer 2011. © 2011 American Cancer Society.