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Fueling Myeloma Research Progress by Sharing Your Medical Record

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Published on December 21, 2017

Is there a way that myeloma patients can engage to help each other? Dr. Tony Blau of the University of Washington School of Medicine has been a part of the oncology world for many years. But with a new outlook after his own myeloma diagnosis, he is now helping other patients like himself. Dr. Blau tells Andrew Schorr about ALL4CURE, a platform where patients share their medical information to receive input from other participants. Watch as Tony explains the benefits of sharing this vital information.

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Transcript | Fueling Myeloma Research Progress by Sharing Your Medical Record

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:

Hello and welcome to Patient Power. I’m Andrew Schorr. Over the many years, I’ve met people from all different walks of life who are affected by the conditions we cover, one of them is multiple myeloma. And, of course, physicians can get sick as well. Researchers can get sick as well. Here is Dr. Anthony “Tony” Blau from Seattle. Tony, you’ve been a researcher for how many years in cancer?

Dr. Blau:

Well, 30 years almost at the University of Washington and focused on cancer mainly the last six or seven years.

Andrew Schorr:

Okay. And your wife is a cancer specialist in breast cancer.

Dr. Blau:

That’s right. Sabel focuses on breast cancer. She’s in a private practice down in Puyallup, Washington.

Andrew Schorr:

Okay. So you’ve been researching in cancer. Your wife works every day in cancer. Take us back to 2015. What happened to you?

Dr. Blau:

So a little prior to that, just to give you a little bit of context, Sabel and I and a group of dozens of other clinical researchers had developed a clinical trials for patients with this terrible form of breast cancer called metastatic triple-negative breast cancer. Lots of biopsies, tons of DNA sequencing, RNA sequencing, hundreds of gigabytes of information, placing the information on the cloud, experts from around the world try to comment on it, to try help us understand it, and then put together a report that we send back to the patient and her oncologist. And then we try to get the patient on the drugs that we think might work to create a prediction for the patient, test that prediction, figure out whether we’re right or wrong. 

In that context, I myself got myeloma, started to have some hip pain. It wasn’t true hip pain. It was more like a pointer-type pain up on the left side. So bad, bad patient, I ignored it for a long time, Sabel said go get it checked out. Finally, I got in April of 2015 an X-ray where within an instant of getting the X-ray I recognized this large egg-shaped hole in my left pelvis.

Andrew Schorr:

You, as a physician, knew it right away?

Dr. Blau:

I knew it right away, in an instant. As soon as the X-ray appeared, I knew it before the radiation technician or radiologist or my doctor who referred me to the X-ray. So I knew I had metastatic cancer. I knew there was some kind of cancer there. And then that night, well, I told Sabel, we called her partner. I had a bone marrow the next morning from her partner. And then mid-day on that Friday, that very same day, that next day, I had a PET/CT scan, and we knew by about 1:00 in the afternoon that I had myeloma, which for me was the best news ever. Because compared to everything else that this could have been as far as, you know, really difficult metastatic cancer, or you know metastatic adenocarcinoma or things like that, myeloma given all the advances was the best news that I could have hoped for.

Andrew Schorr:

Okay. So there are medicines but also some patients that have had transplants. So you ended up having two transplants, an autologous transplant and also an allogeneic with a donation from your brother?

Dr. Blau:

That’s right. That’s exactly right. So when I got myeloma, we took the approach that we had in our breast cancer patients, applied it to me. So I had the same kind of process, tons of biopsies, tons of sequencing, crowdsourcing, you know a global community looking at my data. And my doctor, Pam Becker, was fantastic. I got into remission with my initial treatment, and then went to an autologous transplant. Going forward with the allogeneic transplant from my brother, who’s a Methodist minister in Ohio, I have two brothers. One was a match. That I decided to do after a lot of deliberation. It’s kind of a long story, but…

Andrew Schorr:

…there’s a lot of toxicity with it…

Dr. Blau:

…there was…

Andrew Schorr:

…not a walk in the park.

Dr. Blau:

That’s right. So the things that lined up for me were I had a match, my brother was a match. I was in Seattle. I came to Seattle to learn how to do stem cell transplants, so…

Andrew Schorr:

…where they invented stem cell transplants.

Dr. Blau:

So I’ was in stem cell transplant central, and my wife’s an oncologist. So you couldn’t ask for better home care. So those three things together kind of, and the fact that I still had some tiny number of myeloma cells in my bone marrow ahead of the allogeneic transplant. So after my auto transplant, I still had cells in my bone marrow by flow cytometry tests.

Andrew Schorr:

So how you doin’?

Dr. Blau:

Great. So I had my allogenic transplant about a year-and-a-half ago, and at my one-year anniversary and at my 18-month anniversary, my bone marrow if MRD-negative. So I’m doing great. I still take, you know, lenalidonmide (Revlimid) once a day, and now Revlimid plus ixazomib (Ninlaro). But I get along fine. I feel pretty normal.

Andrew Schorr:

So when somebody goes through this experience, sometimes I don’t know if you had an epiphany, but you said, how can I fill a need? And now you have the experience of being a patient and still being a researcher, so that leads to a company that you started called All4Cure, All4Cure.com. So what is that in myeloma? What’s the goal? What do patients need to know?

Dr. Blau:

So All4Cure was based on the experience that we had with this incredibly intensive trial that we had in breast cancer patients. We often would find things that we wouldn’t understand, and we would shoot out emails to the world’s experts about a specific finding in a specific patient. And in dozens of instances, these experts would always answer. They would tell us everything they knew. They’d refer us to another person who might be better positioned to know the answer. And so that was an incredibly heartening experience. So as I was getting my own transplants, I worked toward the idea of let’s aggregate this knowledge on a common online platform so that things that are learned about one patient can be extended to potentially thousands of patients. And that was the rationale for starting All4Cure. 

We are focused on myeloma initially so that patients come to our website. So this is a knowledge-sharing platform for patients initially with myeloma, clinicians and researchers. And so you can register in any of those categories or if you think you can be of help to us in any way, and patients also agree to send us their medical records and all of their medical records. And from the medical records, we extract information to create each patient’s dashboard, which has a graph that shows all of their treatments, all of their responses in a single picture. So you can kind of comprehensively get a sense of what’s going on with this person within a few seconds of looking at their graph. Beneath that is a discussion panel where every other person—be they another patient, a clinician or a researcher—can look at, for example, my profile and make suggestions that may be of interest to me or my oncologist.

Andrew Schorr:

Wow. And it’s free to patients?

Dr. Blau:

It’s free to patients. 

Andrew Schorr:

Wow. All4Cure. So if I were a myeloma patient—you watching may well be—and that is you can take a look at that, you can give permission for your complete medical record to go into this system, and then it’s exposed to researchers and other doctors and then other patients as well around the world.

Dr. Blau:

That’s right. We take away your name and your date of birth and your medical record numbers. We assign you a unique number, but then we have every other bit of information about you from your medical record represented on this graph. So we show treatment dates. We take a progress note. We remove your name, but you see the progress notes so that people get a very detailed, granular view of what’s going on with you.

Andrew Schorr:

So it used to be that information was so siloed—at an individual institution, maybe with an individual doctor for patient privacy, you know everything was protected. And this sounds like true community that’s starting in myeloma to advance research, and maybe having more ideas coming in for an individual patient.

Dr. Blau:

Yeah, and what I think it does, Andrew, is we’ve created like this transparent network of patients, clinicians and researchers. So imagine that, you know, a patient or a few patients in this network do something that improves their treatment or outcome or reduces side effects. So they’ve tried something, and it’s working for them. That information’s immediately available to every other patient so that it allows for, you know, terrific things to happen to create ripple effects. It can much more rapidly distribute across the entire community.

Andrew Schorr:

So, Tony, here you were in this field. You were already doing this kind fo work with your wife, you said metastatic breast cancer, then you get diagnosed with cancer. And right now you’ve come out the other side. Does this propel you, this personal experience now?

Dr. Blau:

You bet. You bet. You know, I’ve always had a lot of fun in my career. But I’m having an immense amount of fun right now, Andrew. This is just, you know, I really believe that this can transform the face of medicine and this can dramatically accelerate the rate at which progress is made.

Andrew Schorr: 

Well, we wish you well with All4Cure and with your health.

Dr. Blau:

Thank you.

Andrew Schorr:

May you get to do this helping many people for many years. Thanks to your brother for sure. I’m sure that there’s a special bond you have with him now. Him being a Methodist minister, did that inject some religion into you?

Dr. Blau:

Yes, he says that he infused me with the holy spirit.

Andrew Schorr:

Okay. Well, may that carry forward and you do great with it. And I think what it’s about is there none of have asked for these diagnoses. I have leukemia and another blood-related cancer. Nobody asked for this. But if you can live with it or be cured from it, wouldn’t that be great? And what’s life about? And Dr. Blau is making a difference, now propelled as we agreed with his condition and helping others. Thank you so much for being with us.

Dr. Blau:

Thank you, Andrew.

Andrew Schorr:

Dr. Tony Blau from Seattle. I’m Andrew Schorr. 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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