Patient Advocate Jay Blatt Shares a Modified Diet for CLL

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Topics include: Living With Chronic Lymphocytic Leukemia

Meet patient advocate Jay Blatt, who is currently on watch and wait, as he discusses the lifestyle changes he made after being diagnosed with chronic lymphocytic leukemia (CLL). Watch to learn more about the personal wellness program Jay developed based on a macrobiotic, anti-inflammatory protocol.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc. and Pharmacyclics for their support. These organizations have no editorial control and Patient Power is solely responsible for program content.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:          

Let’s go over to New York. There’s Jay Blatt. 

Jay Blatt:                     

Hi, everyone.

Andrew Schorr:          

And Jay, you were diagnosed when?

Jay Blatt:                     

January of 2016.

Andrew Schorr:          

Okay, and what led to that diagnosis?

Jay Blatt:                     

What led to the diagnosis was seven years of my platelets diminishing consistently, and also having two bouts of a bronchitis that I couldn’t shake, and then finally, in November of 2015, while fishing on a jetty in the middle of nowhere, I bent down and a blood clot developed in my thigh. And at that point, as thick as I am, I knew something was wrong. 

Andrew Schorr:          

Okay, and you’ve had no formal treatment, but you’ve been on a special diet that you believe has helped you.

Jay Blatt:                     

Yes, but not exactly. I’ve been on a macrobiotic protocol that includes diet, nurturing the food a certain way, and exercise, and I develop my own type of CLL wellness program, using macrobiotics as a foundation. And it’s a very blood-centric dynamic, where I believe all good health comes from having healthy blood.

Andrew Schorr:                      

Okay, well, we all want to know what we can do ourselves, and that’s gonna vary by person. So, when you say macrobiotic diet, what does that mean?

Jay Blatt:                     

Okay, well it means, just like doctors have a different philosophy and they’re still doctors, doing the same type of thing. Macrobiotics can mean a lot of different things, but my point of view is about lowering the impact of your CLL, because I'm doing this because of CLL, and being able to live as healthy a life as you can. 

But macrobiotics is basically a way of eating, a way of preparing food. It’s a healthy diet. It’s an anti-inflammatory, plant-based diet, and some fish. And you can’t just do macrobiotics half way. You have to go for making it a lifestyle, and that’s what I do. So, I don’t eat meat, which I'm fine with other people eating meat, but for me, it’s my choice not to. I don’t eat poultry. I don’t eat dairy, and I try not to eat a lot of wheat. But the bottom line, blood cells have to be made somehow, and they’re made as a result of the way you eat and the way you exercise. Believe it or not, that impacts blood cells. 

So, unless someone’s ready to study me personally, I'm just going on faith here, but 38 months into it, all my blood counts have also improved, and my white blood cells have remained not only stable, but they’ve actually gone down, so I'm very pleased.

Andrew Schorr:          

Okay, so I wanna give credit to Esther Schorr, my wife of how many years now, Esther? 30?

Esther Schorr:             

It’s going on 34. 

Andrew Schorr:          

34 years. Esther and I have always exercised together, ran last night. Been living with CLL 23 years now, been treated twice: FCR, and then later with obinutuzumab (Gazyva) and high-dose steroid about a year, year and a half ago, and I feel really good. And our diet, again, Jay, we don’t know if that’s the thing, but now we’re really not eating red meat. We’re eating fish, chicken, not even a lot of that, fruit and vegetables. 

Esther Schorr:             

As organic as possible.

Andrew Schorr:          

Point is, nobody’s studied us, but we do feel good. And I think all of us want to say, what can we do for ourselves. Jay, I want to ask you, so you, right now, are doing well, but you have…

…you live on Long Island, but you have a world-famous specialist in New York City that you check with. How do you think about the future, knowing that CLL can change or evolve? And so, diet exercise is working for you, but it may not always. No one knows. 

Jay Blatt:                     

I feel this way, we have to do some of the heavy lifting for our doctors, because they’re so well intentioned, and they can give us miracle drugs, but if we don’t do our part, the disease will just progress, I think, that much quicker. And if I ever needed, god forbid, to be treated, I would do it. And I think it has to be an integrative approach, using the best that modern medicine can offer, and I think we have to do our part. And I think too many people just kinda give up at the beginning. They say, “Uh-oh, this is cancer,” and they get paralyzed, like they’re caught in the headlights. So, I think CLL is a bully, and I do my best to bully it back, and I’ll keep doing it as long as I can. 

I hope that I can get—I was hoping to get ten years of watch and wait, and so far it’s been a little bit less than four, and if I can do this forever, great, and if I can’t at least ill make my body so strong that, hopefully, when it comes time for treatment, Andrew, I’ll have enough strength to wind up surviving.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on August 21, 2019