The CLLANZ Inaugural CLL Seminar

CLLANZ Inaugural Patient Seminar

What is the state-of-the-art treatment for CLL in New Zealand?

Wednesday 14 October, 5.30pm

What are the latest international and local developments in CLL research and treatment, and what’s on the horizon?  What is the optimal approach to ‘watch and wait’ management? How can we access clinical trials?  How does New Zealand compare with international standards of care?

For answers to these questions and more, join us in person or online for the CLL Advocates NZ Inaugural CLL Seminar, featuring three of NZ’s top haematologists and CLL specialists Dr Rob Weinkove, Dr Peter Browett and Dr Gillian Corbett.

The format will be short presentations from each speaker followed by a panel discussion and Q&A.  Attendees can send in questions in advance of the meeting or ask them in person either at the event or through the Q&A chat window on the live stream of the seminar.  Questions you’d like to submit in advance can be emailed to

The event is co-hosted by Leukaemia & Blood Cancer New Zealand with three options to attend.
You can attend in person at LBC’s main office in Auckland, at your local LBC support centre (via Zoom live stream), or from the comfort of your home via Zoom live stream. See details below.

Patients and their supporters are welcome to attend. Please register for one of the following.

Options to attend

Attend in person in Auckland at the live event

5.15pm – 7pm: 6 Claude Road, Epsom, Auckland

Register by phoning Tim Maifeleni on 0800 15 10 15 Extn 9217 or emailing by 7 October

Attend in person at your local LBC support centre

Live event will be screened via Zoom from 5.30pm

Register by calling your local support coordinator on 0800 15 10 15 or email by 7 October

From home (Via Zoom)

Live video from 5.30pm

Register to join the live Zoom meeting here
After you register you will receive a confirmation email

Download event poster

All event details and how to register are available in this poster. Click the image to download or view a PDF.

4 October - CLL Treatments Today: What Should I Know?

Online webinar: CLL Treatments Today: What Should I Know?

Virtual town meeting - 4 October 5am (NZST)


Join this virtual town meeting for chronic lymphocytic leukemia (CLL) patients and family members on Saturday, October 3, 2020 starting at 9 am PT/12 pm ET. This 3-hour program will take you through a CLL 101, 201 and 301 class hosted by CLL patient advocates and experts from Cleveland Clinic and University Hospitals Cleveland Medical Center.  All attendees will receive a special Powerful Patient face mask.

We want you to be part of this event! Send us your best selfie, or a picture of you with your family, or a pet –anything that tells us who you are! You might just see it on the screen!  Please send it to  By sending it to us, you consent to its use in the CLL town hall recorded content and live stream.


12:00-12:30 pm ET- CLL 101 – Information for the newly diagnosed. Learn about the stages of CLL, how to talk to your friends and family, and what to ask your doctor.

12:30-12:45 pm ET- CLL and COVID-19 – Is it safe to start or resume treatment right now? Find out how the coronavirus pandemic is impacting CLL patients.

12:45- 1:30 pm ET- CLL 201 – Learn about the current CLL landscape, including treatment options, side effects and the significance of minimal residual disease (MRD) testing.

1:30-1:45 pm ET – Break

1:45 -2:30 pm ET- CLL 301 – Experts discuss the future of CLL treatment, including FDA approvals, clinical trials and Richter’s Transformation.

2:30-3 pm ET – Q&A

Register here

Clinical Trials Survey 2020

Clinical Trials Survey 2020

Andrew Schorr, Patient Power co-founder, is the virtual keynote speaker to hundreds of people who supervise cancer clinical trials. The event is on September 10th. The event organizers want Andrew to share his perspective – and yours – on participation in cancer clinical trials now, during the time of the pandemic.

Please help Andrew give a powerful speech based on your experiences and thoughts around clinical trials in context of Covid-19.

The survey will just take a couple of minutes of your time.  Thanks for helping and feel free to share with other patients!

Start the survey

Online webinar: Telling Others About My CLL Diagnosis

Online webinar: Telling Others About My CLL Diagnosis

How do you tell family and friends that you have leukemia? Chronic Lymphocytic Leukemia (CLL) patients often don’t “look sick” so it may be hard for your family, friends and co-workers to know what you are going through. How do you help others understand your condition?

Join us for our next CLL Answers Now program on Wednesday, September 16th at 10:30 am PT/1:30 pm ET as host and CLL patient Michele Nadeem-Baker discusses with social worker Robin Katz from Lurie Cancer Center of Northwestern University communication tips for people living with CLL, and the best way to share details of their condition. They will also discuss how to talk to their loved ones about their diagnosis and give advice to people newly diagnosed.

Send your questions in ahead to

Wednesday, September 16, 2020 at 10:30 AM Pacific Time (US and Canada)

Register for the webinar here

World Leukemia Day - 4 September 2020

World Leukemia Day - 4 September 2020

World Leukemia Day is on September 4th and we’d love you to join us.

We are looking for people from all around the globe to participate in increasing the awareness of leukemia that is so vital to help improve the lives of patients after diagnosis.

Here are 3 ways to get involved:

1. Share your leukemia story

Encourage others to share their leukemia story on social media and use the hashtags #WLD2020 or #WorldLeukemiaDay. More information is available at

2. Share your ‘spotty selfie’

Dig out your spotty clothes and share your ‘spotty selfie’ on social media with the hashtag #WLD20 on September 4th to show your support.

3. Spread the word

Help raise awareness of the symptoms of leukemia by using our social media graphics and sharing these across your social media platforms along with the hashtags #WLD20 #worldleukemiaday.

You can download all the social media graphics here >

World Leukemia Day isn’t just about raising awareness, it’s also about education and learning how to spot the signs and symptoms. For some types of leukemia early diagnosis is crucial, if you are experiencing any of the symptoms, speak to a healthcare professional about your concerns.

Find out more about the signs and symptoms here >

We look forward to seeing your ‘spotty selfies’ on September 4th.

Your CLL Advocates Network

CLL Advocates NZ Newsletter Issue 3

CLL Advocates NZ Newsletter Issue 3


Research is a critical part of understanding diseases and their treatment. As set out in our Trust Deed, a key objective for CLL Advocates NZ is to ‘promote and support NZ-based research on CLL, including the value and importance of developing and participating in clinical trials, and improving the quality of NZ data on CLL. In pursuit of this objective we’re developing or supporting a number of initiatives:

  • Clinical trials in NZ. You can find information on our website about ClinTrial Refer New Zealand. If you’re interested in keeping up to date with trials of CLL treatments in NZ, you can download the free app supported by HSANZ (Haematology Society of Australia and NZ) here. A number of New Zealanders have been enrolled in trials, often gaining access to unfunded medications, including “last resort” treatment options for advanced disease. There are numerous such trials actively recruiting as I write. One is Rob Weinkove’s work at the Malaghan Institute in Wellington, on CAR – T cell therapy. Trials of Zanubrutinib vs Ibrutinib  are also recruiting in New Zealand.
  • Second malignancies in CLL. We have proposed a summer studentship/research grant in the Bay of Plenty on this topic. Second malignancies are one of the commonest causes of death in CLL. They include Richter’s Syndrome and skin cancers, including melanoma. The project should start at the end of 2020. Having been a researcher in such studies myself, I know that patient involvement in research projects often significantly increases their own understanding of the disease, as they often involve frequent contact with health professionals and present good opportunities to talk about CLL with them.
  • A PhD research study on the use of cannabis as a medicine for cancer patients. Dr Karen Oldfield is a PhD candidate at Victoria University of Wellington and a Senior Clinical Research Fellow at the Medical Research Institute of New Zealand, who is looking at the use of cannabis as a medicine in NZ. She’s inviting cancer patients to take part in a 5-10 minute online survey about their thoughts on this topic. All information collected will be treated as confidential. This is a valuable research project, as well as a way of fostering links between CLL patients and NZ research groups, and I warmly encourage you to take part. If you’re interested in helping with this research, go to this link on our website.

Finally, do remember the CLL forum we are having online and live at LBC headquarters on 14 October, 5.30 – 7.00pm. Invitations and details will be coming out shortly.

Best wishes

Neil Graham

Online webinar: Aggressive CLL Treatment Options: Are They Right for Me?

Online webinar: Aggressive CLL Treatment Options: Are They Right for Me?

How do experts decide when a CLL patient needs more aggressive treatments? In the age of oral therapy, when do CLL treatments such as CAR-T therapy and clinical trials make sense? Join us on Thursday, August 27th at 1 pm PT/4 pm ET for a live CLL Answers Now Program. Host Andrew Schorr will talk with University of Rochester Wilmot Cancer Center’s Dr. Paul Barr on these more aggressive treatment options for CLL. Please send questions in advance to

Thursday, August 27, 2020 at 1:00 PM Pacific Time (US and Canada)

CLLANZ will publish the link after the event has ended or you can register here

Understanding Chronic Lymphocytic Leukemia

Understanding Chronic Lymphocytic Leukemia

This article was originally published by Cure

Episode 3

Living with CLL as a Chronic Disease


Kristie L. Kahl: Should patients be getting retested if or when their disease recurs?

Dr. Susan O’Brien: There are some tests that we should be repeating anytime we’re considering a new treatment, that includes the FISH test which looks at chromosomal abnormalities inside the CLL cell as well as an important protein abnormality called the p53 mutation. A p53 mutation is a gene that can be mutated and the reason it’s super important to know about these chromosomes and the p53 status is that those patients should never receive chemo or chemo-immunotherapy because they don’t respond very well to it. But even with the small molecule therapies that we have nowadays, patients with those abnormalities can do better on one drug than another. So in other words, it’s important to know that because it may affect the physician’s choice of treatment.

Kristie L. Kahl: Outside of testing, are there other factors that should be considered when it comes to determining the next line of treatment?

Dr. Susan O’Brien: When you have treatment options, which we do nowadays, you want to look at the side effect profile. If you have a patient who has a history of atrial fibrillation or an irregular heart rate…maybe in that patient you want to go towards one of the other drugs. (Venclexta [venetoclax]) can cause tumor lysis so someone with a high-volume disease maybe you would be a little bit more cautious about using that. So you want to look at the side effect profile.

The other thing that’s important is that for some of these small molecules, the length of time that the patient is on the drug is different. So what do I mean by that? With (Imbruvica [ibrutinib]) or (Calquence [acalabrutinib]), the drug is given indefinitely. So once the patient starts on it they just continue on it unless they have a side effect which makes them stop or unless x number of years later the disease starts to come back and is then resistant to the drug. With venetoclax-based therapy, the regimen that’s approved for relapse is venetoclax with the antibody (Rituxan [rituximab]) and that’s a time limited therapy. So the rituximab is given for the first six months only and then the venetoclax is given daily for two years. So that treatment actually stops at two years and that may or may not be important to the patient if they have a time-limited therapy and that may or may not be important to the patient in terms of whether continuous therapy is a problem or time limit is more attractive.

We all know that in the states with oral agents there are copays and so in some senses having a limited time duration might be attractive. On the other hand, there are some patients who say well wait a minute if I’m responding to the drug you’re going to stop it anyway and they don’t like that idea so they actually would prefer to have an indefinite therapy as long as they’re tolerating it and it’s working.

So, I think you have to look at the side effect profiles of the drugs, that they’re different durations of time and then what the patient preferences might be or what’s most important to them.

To continue reading this article here on Cure

Ibrutinib May Improve CAR T-Cell Production for Patients With Chronic Lymphocytic Leukemia

Ibrutinib May Improve CAR T-Cell Production for Patients With Chronic Lymphocytic Leukemia

This article was originally published by Targeted Oncology

Ibrutinib (Imbruvica) during chimeric antigen receptor (CAR) T-cell culture improved the yield and function of CAR T-cell products as treatment of patients with chronic lymphocytic leukemia (CLL) in a study published in the International Journal of Cancer.

The study investigators led by Leapold Sellner, MD wrote, “our study provides evidence that BTK/ITK inhibition with ibrutinib during CAR T-cell generation may improve CLL patient-derived CAR T cell products and may have the potential to enhance CAR T-cell function. Ibrutinib-supplemented CAR T-cell production leads to increased CAR T-cell yields as well as enriches for less-differentiated T cells with lower expression of exhaustion markers and could be an option to further improve the clinical outcome of CLL patients.”

Sellner et al evaluated the absolute cell numbers during CAR T-cell generation by Trypan blue staining. During cell generation, cell proliferation was significantly lower in CLL-derived cells compared with HD-derived cells. The BTK inhibitor allowed for a significant increase in cell expansion of HD-derived cells on day 10 of the CAR T-cell generation (20.67 ± 8.82 × 106 without ibrutinib vs. 25.28 ± 10.29 × 106 with ibrutinib; P =.0248), and ibrutinib appeared to significantly increase the viability of CD3-positive T cells from HDs on day 10 (3% ±8% vs 87% ± 7%; P =.0183) and day 14 (84% ± 8% vs 91% ± 6%, respectively; P =.0202).

To continue reading this article here on Targeted Oncology

TML Helps Predict Time to Treatment in CLL and its Precursor, Study Shows

TML Helps Predict Time to Treatment in CLL and its Precursor, Study Shows

This article was originally published by AJMC

Tumor mutational load (TML) can be used as a prognostic indicator in patients with chronic lymphocytic leukemia (CLL) and high-count monoclonal B-cell lymphocytosis (HC MBL), according to a new study.

The findings suggest that performing a focused mutation panel on recurrently mutated CLL genes could help risk-stratify patients and more accurately predict time to treatment (TTT).

Most patients who are newly diagnosed with CLL do not require therapy for a number of years, but some patients will require therapy right away. CLL’s precursor, HC MBL, will progress to CLL at a rate of 1-5% per year, but it can be difficult to predict how soon an individual patient will progress.

In hopes of better predicting patient progression, investigators from the Mayo Clinic conducted a study to analyze the total number of recurrently mutated CLL genes (TML) and the individually mutated genes beyond the CLL international prognostic index (CLL-IPI) in newly diagnosed patients with CLL and HC MBL.

To do so, they recruited 557 patients, 445 of whom had CLL and the remainder of whom had HC MBL, and sequenced 59 genes in the patients. Their goal was to identify links with TTT, adjusted for CLL and sex.

The authors found that TML correlated with shorter TTT. Among patients with low/intermediate risk, the link was even stronger when patients were stratified by CLL-IPI. Their results are published in the American Journal of Hematology.

To continue reading this article here on AJMC