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Hope and Self-Care After an ALL Diagnosis

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Published on February 25, 2020

Key Takeaways

  • Maximize your support systems by taking advantage of the resources available to you.
  • Prioritize being healthy through balanced nutrition, getting enough sleep and managing stress.
  • Be hopeful—the cure rate for relapsed ALL has increased from 40% to over 60%, with potential for even higher rates in the future with increased optimization of existing therapies.

“Nutrition, sleep, stress reduction…all of those things have been shown to affect outcomes,” says Dr. Patrick Brown, an acute lymphoblastic leukemia (ALL) expert from the Kimmel Cancer Center at Johns Hopkins.

He met with Patient Power Co-Founder Esther Schorr at the 2019 American Society of Hematology (ASH) Annual Meeting & Exposition to discuss the importance of asking for help and prioritizing self-care if you or someone you love has received an ALL diagnosis. Dr. Brown also talks about cure rates and why there is reason to be hopeful. Watch now to learn more.

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Transcript | Hope and Self-Care After an ALL Diagnosis

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.

Esther Schorr:            
For your patients who end up with this diagnosis of ALL, I’m sure it’s very frightening. And it sounds like, even though there’s a lot of progress, this is not easy treatment, necessarily.

Dr. Brown:                 
No.

Esther Schorr:            
So, what do you advise patientswhether it’s about exercise or relaxation or diet, are there someanything particular you would recommend or tell them to think about?

Dr. Brown:                 
Well, a lot of our recommendations depends on what kind of age group the patient’s in and what their family situation is.

Esther Schorr:            
Sure. Might be the parents, right?

Dr. Brown:                 
The first thing is to maximize your support systems, and that’s true of any age group. We tell our families, “Look, you’re probably notyou’re used to not wanting to ask for help. Ask for help.” This is not something that families can do on their own without help from other people. And for young children, that means their parents reaching out for help and getting support from their community, from all the resources that we can make available to them, getting homeschooling for their children, etcetera, etcetera. For older adults, it means making sure that you have a caregiver with you. And for those patients in the middle, it’s really tough.

Adolescents and young adults are in that transition from being reliant on their parents to being variably independent. And so, it’s a very challenging time. So, we just ask them to take advantage of all the resources available to them is the first thing. The other thing is just to be healthy, so all of the different things you talked about; nutrition, sleep, stress reduction. All of those things have been shown to affect outcomes.

And we don’t necessarily, in the medical field, do a great job of making all that stuff systematic as part of our treatment. We’re really good at prescribing medicines. We’re really good at putting our white coats on and our stethoscopes, but we need to do better at partnering with some of those experts in those areas to make sure our patients are getting everything they need.

Esther Schorr:            
Oh, thank you. That’s great advice. And I guess, in parting, listening to this, would you say that patients and their families, their care partners, is this a message of hope?

Dr. Brown:                 
Absolutely, absolutely. The example, I just gave, so relapsed ALL, before these results came out, the cure rate was in the 40 percent rate. And now, it’s up to over 60 percent.

Esther Schorr:            
Wow.

Dr. Brown:                 
So, that’s a big jump.

Esther Schorr:            
Excellent.

Dr. Brown:                 
And I think that that’s just the beginning. I think there are ways we can optimize these therapies to make the cure rates even higher. So, it’s an exciting time. There’s plenty of reason for hope in not only ALL, but in many different blood diseases.

Esther Schorr:            
Dr. Brown, thank you so much. You’ve just educated me...

Dr. Brown:                 
You’re welcome.

Esther Schorr:            
...and, as a result, educated our constituents.

Dr. Brown:                 
Great.

Esther Schorr:            
This is Esther Schorr from ASH in Orlando. And remember, knowledge can be the best medicine of all.

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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