ASCO 2019: Key Messages, Information and Data

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:

And hello, greetings.  Andrew Schorr and…

Esther Schorr:

…Esther Schorr.  

Andrew Schorr:

And where are we?  

Esther Schorr:

We are at Andrew's monthly infusion.  He gets IVIG each month that allows him to keep on keeping on, traveling and working and getting himself into all sorts of trouble on a regular basis.  

Andrew Schorr:

We're in Encinitas, California, at the UC, University of California San Diego Cancer Center here, not too far from where we live, about 30 miles north of San Diego in Carlsbad, California.  And the idea of the IVIG or immunoglobulin is to have somebody like me where my immune system is not great to avoid pneumonia and infections.  

Esther Schorr:

So far so good.  

Andrew Schorr:

So far so good.  So normally at this time of year we go to a big cancer convention, the biggest, and it's called ASCO or the American Society of Clinical Oncology.  Medical Society puts it on.  30-40,000 people devoted to researching and treating people for cancer, they come together in Chicago every year.  Usually we go.  It's kind of a circus.  

Esther Schorr:

It is, and we're not not going because there's any problem at our end.  We just wanted to give someone else who is very special to us on our staff, relatively new person with loads of experience in cancer communities, give her a chance to experience and meet with researchers and experts and other patient advocates.  

Andrew Schorr:

So our old friend Cindy Chmielewski is there too.  Cindy is Myeloma Teacher, many people in the myeloma community know her.  Cindy is there, and then the woman that Esther was just referring to, new team member at Patient Power, Rebecca, Becca, Seago-Coyle, who is a breast cancer survivor herself.  And so she's running around ASCO, and a few minutes ago we cornered her and said give us a news report from ASCO.  

Esther Schorr:

News flash.  

Andrew Schorr:

So here's that report.   

Hi, Becca, in Chicago at ASCO. What's going on?  

Rebecca Seago-Coyle:

Hey, it's so much fun here. It's energizing.  It's so busy.  There's 40,000 people here, and there's medical oncologists, researchers, patients, nurses.  Everyone's here all devoted to helping cancer.  

Andrew Schorr:

Now, you are, Becca, you're a breast cancer survivor yourself.  So for someone who has been treated for breast cancer, and you never know could you need treatment again and you know so many people who are affected. Does it give you hope?  

Rebecca Seago-Coyle:

It does.  I mean, there's so many people here, there are so many things coming out, not only for breast cancer but also for all the cancers. There's just good information. There are—people are all here just to learn about how we can help the patient.  And actually this year's theme at ASCO is caring for every patient and learning from every patient, and that has been true throughout the entire weekend.  

Andrew Schorr:

So you're feeling upbeat.  

Rebecca Seago-Coyle:

Oh, yes.  Yes.  

Andrew Schorr:

That's good.  Now, you did a bunch of video interviews which will be on Patient Power, so tell us who you've been talking to and what you've been learning.  

Rebecca Seago-Coyle:

Yeah, yesterday I spent all day, and I think I've got about 16 interviews.  There's a couple of researchers, there's a couple of oncologists, there's a couple of patients.  We talked about myeloma, MPNs.  We also talked about breasts.  We actually talked about ovular breast cancer, which is a little different than ductal carcinoma in situ or invasive ductal carcinoma.  We also met with someone to talk about melanoma, and actually one of my exciting interviews was talking about artificial intelligence in lung cancer for diagnostics.  To me that just seem so—makes me think like, hey, Alexa, tell me about my scans.   

Andrew Schorr:

Oh, wow.  

Rebecca Seago-Coyle:

So some details on that. 

Andrew Schorr:

So these are the interviews. They'll be coming out on patientpower.info, and you'll promote.  So do you feel like you're coming back with a whole treasure trove of insight for people living with cancer?  

Rebecca Seago-Coyle:

Absolutely.  Even this morning I went to a session on big data, and one of my favorite quotes out of that was—we all know the quote, you can't see the forest through the trees.  Well, they crossed out the forest and the trees and they said you can't see the patients from the big data—or don't forget about the patients' big data. 

Andrew Schorr:

Right.  So basically trying to find out exactly your situation and have the computing power to get at that.  

Rebecca Seago-Coyle:

Exactly.  There's also a lot of information on clinical trials and really paying attention to what the patients' response was in those clinical trials and also making clinical trials more available and accessible to patients. 

Andrew Schorr:

Okay.  Well, this sounds great.  And I want to thank you for being in Chicago for Patient Power.  It's kind of running a marathon, isn't it?  

Rebecca Seago-Coyle:

It is.  I'm not really great at bringing sensible shoes, but I'm definitely going to treat myself to a pedicure after this.  

Andrew Schorr:

There you go.  And I think the bottom line, though, for you and I and our viewers living with cancer is there are a lot of people working on it. 

Rebecca Seago-Coyle:

There are.  There's a ton of people working on it.  One of the key messages in the plenary was people, people, people, and it was interesting to bring 40,000 people together where we all have the same thing in mind.  We all care about the patient and bringing information and clinical trials and resources to the patients.  

Andrew Schorr:

And do you feel that the overall goal is cure?  

Rebecca Seago-Coyle:

Is the overall goal cure? I think we're a little far from that, but I think we're working towards that.  

Andrew Schorr:

Okay.  Let's work for that, and maybe one day we'll report from ASCO and we'll say, they cured this one and they cured that one.  That's what we will all hope for.  Well, thank you.  Have safe travels back and thanks for your report.   

Rebecca Seago-Coyle:

Thank you so much.  

Andrew Schorr:

And, Becca, boy, good for her.  

Esther Schorr:

She had on her track shoes. 

Andrew Schorr:

Yeah, and the news is ever more hopeful.  Obviously, there's been progress in some cancers more than others, and the ones I have, chronic lymphocytic leukemia, lots of new options.  There's another new option it looks like it's coming for people with myelofibrosis, the other condition I have.  There's a lot of research going on in breast cancer, lung cancer, ovarian cancer, and, yes, they're working hard on pancreatic cancer and glioblastoma in brain cancer too, so we have a way to go.  So look for those interviews.  

Now we have other things going on.  

Esther Schorr:

Yeah, actually some pretty fun and interesting things.  I had the pleasure of interviewing a gentleman from down under, from New Zealand. His name is David Downs, and the interview with him is up on our website—no it was a Facebook Live, so it's Facebook and on our site.  And David is an amazing story.  He was a corporate executive and a stand?up comic and a survivor of a difficult?to?treat, usually difficult?to?treat type of lymphoma.  

And after being told that he didn't have long to live he lobbied for himself, advocated, did research with his wife, and ended up in a clinical trial for CAR?T therapy.  And he's just doing great.  He's written a blog and a book, and the interview was just delightful, so I hope that you all will take a listen because he's very inspirational.  

Andrew Schorr:

We're going to be doing a lot more on I don't want to say the positive side of cancer, but there is a positive side, but how people cope.  

Esther Schorr:

Adding humor.   

Andrew Schorr:

Adding humor.  How do people live well even with these serious diagnoses.  

Esther Schorr:

Positive outlook and what it means.   

Andrew Schorr:

And David is part of it, our lung cancer community manager, Laura Levaas is going to be interviewing people about that.  She's in Denver, so there's that.  And then you have another interview coming up.  

Esther Schorr:

Right.  Coming up actually tomorrow I'll be interviewing Jim Harland who is a CLL… 

Andrew Schorr:

…I'm getting my blood pressure while we're doing this.   

Go ahead about Jim Harland, Esther.  

Esther Schorr:

Yeah, Jim is a CLL patient, and he's been through bone marrow transplant, and he'll talk a bit about that experience after having been through a number of cancer treatments. And he'll be very inspirational I'm sure, and has an interesting story.  

And we have also coming up in the next couple of months a number of town meetings.  We just want to let you all know about that in Cincinnati. 

Andrew Schorr:

For CLL.  

Esther Schorr:

On July 27th for CLL, and then another one in September, don't have an exact date yet, also for CLL in Dallas. And then we're planning to do a myeloma town meeting and that will be at MD Anderson.

Andrew Schorr:

In Houston.

Esther Schorr:

In early September.  

Andrew Schorr:

September 7, and we expect to have our friend Dr. Bob Orlowski there and also Dr. Elisabet Manasanch, who is another expert who works with Dr. Orlowski at MD Anderson. So we have a lot going on.  And then there are all these virtual?only programs, a number of interviews that we're doing all the time.  So we like to believe that Patient Power is really putting out more video content and transcripts for you all the time, and some of it is on specific cancers and some of it applies to all of us living with cancer.  

Esther Schorr:

That's right.  And, people, watch because in July we're also going to have a much easier?to?navigate website.  

Andrew Schorr:

Right.  

Esther Schorr:

So to be able to find some of this good content will be even easier than it is now.  So we're very excited about that.  

Andrew Schorr:

I would say, though, it's very apparent to us, we have a ways to go.  This clinic is full today.  You can see how crazy it is.  Victoria, the nurse, was just here, and I come back every month, and some people are here much more frequently, and this is just one clinic.  So there's a lot of treatment going on.  There are issues related to cost of care, efficiency of care, infused care versus oral care.  We talk about all that.  And we always invite your questions, so just send them to comments.  

Esther Schorr:

Yeah, comments@patientpower.info.  And actually I'm finding great delight, reward and inspiration in being the one who gets your questions right now.  And when I can answer them directly I do, and when I don't have an answer I go to our wonderful staff and some of our experts 

Just so you know, we can't really answer specific medical questions, but we can certainly point you to information on our website and to other resources that we're aware of that we feel are trustworthy.  So please write in, and we'll be happy to interact with you.  

Andrew Schorr:

And you read every one.  

Esther Schorr:

And I read every one.  

Andrew Schorr:

Thank you, Esther.  So, remember, what's right for me may not be right for you.  And we are not doctors.  We are in the medical patient communication business, and that's what we've been devoted to, Esther and I, since 1984.  So we've done this a long time.  

Esther Schorr:

That makes us really old, you know.   

Andrew Schorr:

And, yeah, but isn't it great that you can be diagnosed with a cancer and have longevity.  And that's what we want for everybody.  Thank you for being with us.  We'll be back at least by next month but doing these interviews, and look for all those interviews that Becca's done on the Patient Power site. We'll promote them here too, on our Facebook pages.  

Esther Schorr:

And thank you to our great producer, Maui, who is in the background taking care of us and making sure that you get the information we're passing on.   

Andrew Schorr:

Right.  So I'm Andrew Schorr.  That's Esther Schorr.  What do we like to say?  

Esther Schorr:

Knowledge can be the best medicine of all.  

Andrew Schorr:

See ya.  

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.