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New Jersey CLL Doctors & Patients Host a Virtual Dinner

New Jersey CLL Doctors & Patients Host a Virtual Dinner
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Published on August 5, 2020

‘Dinner With the Docs’ Program for Chronic Lymphocytic Leukemia Patients

CLL Virtual Dinner Gathering Host Carol Preston

Carol Preston

Is it possible for CLL patients and doctors to have a sit-down dinner to discuss important treatment news in the middle of a pandemic? These New Jersey doctors and chronic lymphocytic leukemia patients didn’t need a restaurant banquet room to connect, share stories and learn more about their diagnosis and treatment.

All it took was a gift certificate from UberEats and Zoom.

In July, Patient Power hosted its first “CLL Connections: Dinner with the Docs,” a three-night event where 30 patients from different parts of New Jersey had dinner virtually with a local physician and a doctor from Rutgers Cancer Institute of New Jersey (CINJ) located in New Brunswick. The series was sponsored by Janssen Pharmacyclics. Carol Preston, a CLL patient and Patient Power host, moderated the discussion.

“Even during the pandemic, patients still have CLL and they need answers and reassurance,” said Patient Power Co-Founder Andrew Schorr. “That’s why our ‘Dinner with the Docs’ series across New Jersey was so popular and successful — even virtually. Patients and docs could still have ‘dinner’ with each other and share education and positive interaction to help New Jersey patients come away with knowledge, confidence and hope.”

Here's what the doctors had to say about COVID-19, CLL treatments and why patients should have hope.

CLL Virtual Dinner Gathering featured Dr. Andrew Evens

Dr. Andrew Evens

July 13, Central New Jersey

Featuring Dr. Andrew Evens, Rutgers CINJ; and Dr. Kathleen Toomey, Steeplechase Cancer Center at Robert Wood Johnson University Hospital Somerset in Somerville

On CLL and COVID-19

Dr. Evens: It was hard enough to grapple with a diagnosis of cancer, the treatments, and the side effects. Now you just layer on top of it the worst pandemic of our lifetime. With that said, we are a resilient species and we adapt… Please, we recommend whether it’s CLL or breast cancer, you don’t want to cut off your nose to spite your face. Yes, it’s out there. Yes, this is scary. But cancer is not quarantined. Cancer is still moving, still going and we need to fight it just like we are COVID.

On CLL Clinical Trials

Dr. Toomey: The only way for us to get better and cure CLL, or any other cancer, is to do a clinical trial because if we stayed back in the 2000s, we’d still be in the 2000s… So, each and every time I see a patient, especially new patients, ‘Do I have a clinical trial to offer to that patient?’ Because I think a clinical trial is at least the standard of care and maybe something better. That’s how we all have to look at it. We want to cure it.

CLL Virtual Dinner Gathering featured Dr. Kathleen Toomey

Dr. Kathleen Toomey

July 14, South Jersey

Featuring Dr. Roger Strair, Rutgers CINJ; and Dr. Seth Cohen, RWJBarnabas Health Southern Region

On How Far CLL Treatments Have Come

Dr. Strair: I'm going to turn the clock back about 20 years or so, and bring up the sad story of Paul, who was dying of CLL without many treatment options. And he said, ‘Dr. Strair, can you make sure my children know I didn't lose a battle to cancer? But I fought a battle that couldn't be won.’ And that's in fact what we did. And the beauty now is there are no more of those battles that can't be won. The exciting thing is not how far we've come. The exciting thing is what's next.

On the Future

Dr. Cohen: I'm just so ecstatic because we've really changed the paradigm of what CLL is and, you know, back to my day when I was a fellow — ‘It's a chronic disease. Let it be. Patients are going to live with it. And that’s that.’ And now we have a curable disease, and we never used that word before. We didn’t really have great treatments before but now we have phenomenal treatments. We are seeing better drugs, less toxicities, patients really living longer.

July 15, Northern New Jersey

Featuring Dr. Rajat Bannerji, Rutgers CINJ; and Dr. Robert Grossman, The Cancer Center at Saint Barnabas Medical Center in Livingston

On Hope

Dr. Bannerji: What gives me hope for the future is the fact that we’re working towards therapies where our period of treatment is limited and yet we are hoping the response to that treatment is prolonged indefinite. I think harnessing the immune system for the treatment of CLL is very exciting. We spoke about CAR-T. There are other treatments also in development — bispecific antibodies, antibody-drug conjugates that are targeting proteins on the surface of B cells, including CLL. So, I think that whole field of immunotherapy and CLL is opening up and that, combined with the novel therapies, is exciting. And hopefully, for some patients, we’ll be able to give them a definitive treatment that just gets rid of it.

What’s the Takeaway Message for CLL Patients?

Dr. Grossman: For all that we know about CLL, each patient is unique and goes through it differently. With all the new agents, I think as a physician, we’re not sure what the best answer is. They’re not necessarily compared with each other and the combinations, how to use them is just emerging. So, the patients have the questions that we can’t answer right now. I think the fact that there are all these agents, it really does offer significant hope for turning this into a more chronic illness that people can live with and live with for a longer time, hopefully with a lot less side effects than we used to cause with treatments in the past.

~Megan Trusdell

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