Thanks to our episode sponsor, Takeda Oncology Dr. Mike Thompson, MD, PhD @mtmdphd Aurora Cancer Center Interview Date: August 17, 2015 Summary Some people use social media to document their vacations, their thoughts or even their food. But some oncologists and patients are using it in more meaningful ways - to find a cure for their disease, like multiple myeloma. Learn from Dr. Thompson about ways he is engaging doctors and patients to learn more about multiple myeloma. Social media adoption helps doctors stay up-to-date on the latest research in minutes instead of months or years and also allows patients to learn as much as the doctors if they are so inclined. Dr. Thompson shares specific resources, and patients share stories about how using social media has made all the difference for others. Get online and learn more about these key ways you can receive better care. The Myeloma Crowd Radio Show with Dr. Mike Thompson
Jenny: Welcome to today's episode of Myeloma Crowd Radio, a show that connects patients with myeloma researchers. I'm your host, Jenny Ahlstrom. We'd like to thank today's episode sponsor, Takeda Oncology, for their support of Myeloma Crowd Radio and myeloma patients. This is a very big show for us being our 60th show. And today's show is very exciting. We're very privileged to have with us Dr. Mike Thompson who will be sharing his work to expand the social use of media in multiple myeloma and other cancers in order to get to a cure at a faster pace. But right along with that is our announcement at the end of the show of the final projects we've selected for the Myeloma Crowd Research Initiative. We are going to keep you all in suspense until the end of the show for that very big announcement. We are also joined by our Patient Advisory Board members who we will add on after our discussion with Dr. Thompson. So Dr. Thompson, welcome to the show.
Dr. Thompson: Thank you for having me, and it's my pleasure to be here.
Jenny: Well, we're very happy to have you today. Dr. Mike Thompson is of the Aurora Cancer Center. He is medical director of the Early Phase Cancer Research Program for the Aurora Research Institute and Aurora Cancer Center. He is Clinical Adjunct Assistant Professor in the Department of Medicine at the University of Wisconsin School of Medicine and is an oncologist with deep multiple myeloma expertise in practice and training at his own facility as well as the Mayo Clinic and MD Anderson. He is on the ASCO Cancer Research Committee, ASCO Community Research Forum Council, ASCO Social Media Working Group, and ASCO Myeloma/Lymphoma Education Committees. He's received numerous awards around multiple myeloma research including the ASCO Young Investigator Award and the ASH Clinical Research Training Institute. He serves on editorial and review boards for journals and writes for the ASCO Connection Blog, the Oncology Times Blog, and is a powerful force bringing social media into the world of oncology. He has created a moderated multiple LinkedIn discussion boards for Oncology Pharma and is a member of the ECOG Myeloma Core Committee. ECOG is the Eastern Cooperative Group where they formulate clinical trials for multiple myeloma. He helped them establish their social media presence with a hashtag and Twitter handle. Dr. Thompson is a driving force behind the adoption of social media in the world of oncology, speaking at the most recent ASCO conference on this topic which is #ASCO15, and participating as a lead at ASCO and ASH for social media adoption in the world of oncology and healthcare. This December he will lead a special-interest session entitled "Social Media for the Hematologist" at #ASH15. Dr. Thompson, along with myeloma patient Cynthia Chmielewski, created the #mmsm Tweet Chat program to connect patients with myeloma specialists, and he helps create and influence social media for other cancers as well. So in looking at his bio or CV, it was very hard to pull out what to put on here because his expertise is just so deep. So Dr. Thompson, thank you again for joining us.
Dr. Thompson: Thank you for that thorough introduction.
Jenny: Well, there's a lot more I could say but we want to get to the questions as well. So maybe you could give us a little bit of background about how you started having an interest in the use of social media as it relates to oncology or in medicine.
Dr. Thompson: So I was thinking back on this and I think what happened is I was on LinkedIn and they had a button for your Twitter account. I didn't have one and so I said, oh, maybe I'll play with this. And I created one - Dr. Thompson, Mike Thompson MD, and all these different combos. My name is so generic that they didn't really fit. So I found the shortest combo of letters that kind of fit something because you want to save letters and that's how I got mine, and I thought it was kind of a trivial username. I didn't think I'd really use it that much and I thought I would change it if I needed to. So I started up on that I think September 2010 is when I created my account. I kind of played around with it a little bit but didn't do much I think like a lot of people first get on Twitter or other social media. I went to the MD Anderson Community Clinical Oncology Program annual meeting in Houston, and my friend and colleague and mentor Mike Fisch, he was the chair of that. This was after the Arab Spring uprisings in the Middle East in 2011. He was tasked with giving an update on social media and Twitter. He didn't really know much about it so he got on and was playing around with it. I was sitting on his desk in his office and he was showing me TweetDeck and HootSuite and how you can monitor all these things and how you can get all this information out of there. We were talking about the Middle East and other things. He said, "What if we could use this as a force for good for cancer?" So I listened to that. I kind of got more interested. I went to a tweetup at ASCO in 2011 and I met a variety of other Twitter users. And then I eventually got brought on to the ASCO Integrated Media and Technology Committee and worked with ASCO staff. I got on the ASCO Connection Blog. And then I went to the Mayo/Ragan Social Media Conference in October 2011 in Rochester, Minnesota. I heard from visionaries like Dave de Bronkart who is e-Patient Dave and Wendy Sue Swanson who's @SeattleMamaDoc. I thought going to that meeting I would hear some technical ways of doing things better. And it was qualitatively different. It was more like a religious revival meeting that I saw how you could really do something important. Hearing how for pediatricians, if you had more pediatricians using social media, you could change the whole discussion about vaccines and prevention and all these things we can do, all these things everyone wants to do in that area. I thought that we could really have a big impact in cancer. Since then it's just been kind of a flurry of interesting things happening. I was in relatively early and there weren’t that many people doing it. I got asked to talk at the ASCO 2012 annual meeting. I worked with Dr. Anas Younes who's an early proponent and Bob Miller. We talked about using social media in oncology for education and patient engagement. Yearly since then I've been doing various talks and it just kind of ramped up. Every time I think there's nothing more to talk about and no one wants to hear about it anymore, I kind of get more invites to do things.= Thinking about both social media and about myeloma, I saw a quote recently that David Steensma shared from Kanti Rai. He said, "If I were truly an expert, the disease," talking about CLL, "would have been cured by now." I think the same with myeloma and with social media, I'm just another person learning about things. I think what we're seeing is there's a spectrum of some patients like you, often hear about things before I do or before even some of the world leaders in myeloma. And it's cool. It's great. There's not like just a handful of people that are controlling the information. The information is out there and people that have had expert training in it that see myeloma patients all day are probably going to how to integrate that better and contextualize that, but there's a range of patients and knowledge seeking activities. I think it's going to help not only drug development; it's going to help us advance the agenda of increasing knowledge and increasing society's role in accruing to studies, supporting infrastructure, and trying to get things moving.
Jenny: Okay. Well, that's perfect. That's kind of a great transition into what my next question is - What do you believe is the overall potential for its use especially as it relates to myeloma and other cancers? So you mentioned, number one, education; you mentioned patient engagement; and you mentioned accrual to clinical trials. Do you want to go into any more detail about those or any other ways that you can see it would be more powerful?
Dr. Thompson: Yes. So I just had a meeting earlier this morning about a study from a company that was not accruing well nationally. It's a study that makes complete sense. It should accrue well and now they've made some amendments that make it the inclusion criteria better. I said, well, you need to get that information out there, and you can do it through social media, making sure you're obeying the FDA's mandates, inquiring how companies do that. But you can get that information out there now and cheaply and disseminate it to people that are interested in your disease type. So I think there's a lot of potential for helping with the accrual. One of the real leaders in this has been Anas Younes, who was at MD Anderson, now at Memorial Sloan Kettering, using Facebook looking at Hodgkin's. They really increased their accrual using social media. There are categories, the SCAD, a group of Spontaneous Coronary Artery Dissection, a group of mainly women with this rare disease. They formed their own group and then went to the Mayo Clinic and asked them to study them. I think we're just seeing there's grassroots efforts. There's this kind of hybrid efforts like the MCRI that I think you're going to talk about later on. I think there's huge potential. If we're accruing between 3% and 5% of patients to clinical trials, we just can't advance things as fast as we need to. When I did analysis of again back to CCOG groups and we looked at maybe now 3% of adults, cancer patients going to clinical trials, only about one-third of those were therapeutic studies. So there's supportive care, there's registry studies, quality of life, all things that are important, but they're not advancing drug development. Whether you're a company, you obviously want drug development. But if you're a patient, that's what you want too. And if you're the NCI funding something too -- everyone wants drug development to work efficiently and one way to make that more efficient is by increasing your accrual in clinical trials. We did have a study through the NCI trial accrual working group which I was not involved with but Matthias Weiss and a number of other people were. I'll try to find those references and send out some tweets in a break here, but they figured out that they needed to try to look at barriers to accrual for the NCI trials. They published something in ASH looking at barriers. And then in a later ASCO meeting, ASCO 2013, they looked about strategies to overcome these barriers, and one strategy was using social media to educate patients and MDs. People have looked at that and I think we don't have a lot of data on what strategies account for what outcomes for improving accrual, but we do know that once we started doing some more things in social media with myeloma that the number of physician conversations about myeloma increased. It's hard to know how many of those conversations directly led to increased accrual or screenings and things like that, but I think it has huge potential. I think something that we can all know just from the people using it is that you gain information quickly and it can be curated. Twitter, which is one of my preferred social medias, is a stream. You don't have to think about it. You don't have to be in it constantly. You can dip your foot in or body in when want to. If something is going to be important, it's probably going to be amplified and recurrent on there and you're going to see it. I often see things on social media days before in other electronic formats or maybe a week before it comes out in mainstream media or print. It could be months before it comes out in a publication. I think it's highly useful. For me, I share a lot of things and I probably put out more tweets than a lot of people in oncology and sometimes it may be too much. But when I'm finding stuff, I take that information, I organize it in Evernote in the disease type and so I can find it quickly. I figure if it's interesting to me, as a little tidbit I want to store away, someone else might be interested in it too and I try to tag it. And then I look at other people in myeloma and other areas too -- precision medicine and just cancer in general, I try to gather information. To me, it's highly useful. I think there are people that it's not useful for and not everyone has to use the same formats. Other people may have yet to be introduced to it and understand how they can use it.
Jenny: Well, I think that speaks to a point that Dr. McCarthy said. He said he had just barely joined Twitter, and he said it was a great way for him to see an overview of everything that was happening because sometimes it's too hard, you're so busy that it's too hard to keep up on everything. So it was just like this little snippet of something that may or may not be relevant. He can sort through it really quickly by the people that he's choosing to follow. I know you're part of the ECOG Group. Have you seen any sort of changes in recruitment to their studies with the increase of social media use?
Dr. Thompson: There are analytics you can do where you can tell if someone clicks on something, but it's hard to tell if a clickthrough results in an accrual or something. So I think it's difficult to be that definitive. There is the perception that it has helped accrual for ECOG studies. At the urging of ECOG and support from other people in the NCTN created the ECOG username and hashtag which was similar to that used by SWOG. So we're trying to coordinate our efforts. So I created that and then handed it over to the ECOG communications group, and they've been using it also. I think it's been beneficial and I think if you put out like this trial is open, it doesn't really cost anything. If anyone looks at it and there's any benefit, I think it's very helpful. I think at this ECOG event I might query people and see if anyone saw things using that. We might only be able to get anecdotes right now, but I think there is a perception that has been helpful.
Jenny: Well, great. You mentioned educating patients and doctors at the same time. Have you seen a difference in being able to educate people who treat myeloma but are maybe general oncologists and who have a really tough time staying up to date on myeloma specifics? Because that's tough.
Dr. Thompson: When we do our myeloma tweet chats, there aren't necessarily that many people that are actively commenting. I think there are patients that feel they're still not expert enough and they just want to gather information. I know that there are people in companies watching it, and I know that there are other myeloma physicians on social media that aren't as facile with quickly – sometimes it can go really fast. I know because people will email me or talk to me later and say, "Oh, I saw this." I think it does impact things. Again, it's very hard to get the metrics on and we're trying to get metrics on some of the hashtag use and how that's doing. There are a whole bunch of people that are more sophisticated at this than me working at companies like W2O and Simpler and other analytics companies. They're trying to analyze not only retweets or impressions but the network of how people are communicating. At the last ASH meeting, we really saw this huge increase. You can see that the network qualities so the number of connections between different people has increased. I think that's part of having it not just be a few or several people that are highly into it that are communicating with each other but trying to make a more diverse and decentralized network of people communicating. And then after meetings like ASH or ASCO or others, we're seeing this tail effect of people digesting the information. The nice thing is they can go back and if you tag it, they can search that information. I've sometimes done searches where I know that I saw a talk and I might have even taken a picture and commented on it and I can't remember it. I'll go search my own stuff and it's kind of almost like public note taking. So that's been helpful to me.
Jenny: Oh, that's a great archive to be able to go back to because there's so much that comes out in those conferences. I can't even imagine what would come out of ASCO because I've just been to ASH. ASCO is the every cancer, so that's a great tool for that. Maybe we want to talk next about the specific programs that you've implemented because that goes right into that. Can you share your involvement in just growing use in these professional organizations like ASCO and ASH?
Dr. Thompson: Yes. It's kind of exploded. I'm on the ASCO Social Media Working Group which basically before when we're doing it the last few years was just a couple of people interested. Now we've kind of more formalized it. Dr. Don Dizon leads that or he's @DrDonSDizon on Twitter. For ASH, I was asked to give an intro for a panel of people talking about social media at this ASH this December. Right before that, I'm going to give grand rounds on the topic at Emory. We're working on a manuscript on the Cancer Tag Ontology led by Matthew Katz or @subatomicdoc. We're working on that right now. We had an abstract on that at the ASCO meeting and it was picked up by others on how this kind of open access way to try to organize health information. A lot of people kind of informally have sought my advice on how should we do this. I think one thing interesting is as pharma is trying to get more into the space, I've really tried to steer them away from doing things like come to my booth or prescribe more of my drug but to really think about how they can help people and be a resource. That's how they'll get engaged with it. One of the pharmaceutical companies has started using the clinicaltrials.gov hashtag or the clinicaltrials.gov number. It's NCT with some numbers and add a hashtag to that. I think all pharmaceutical companies, if they did that, would have a reportable way to tell the FDA how they could track the use of that because otherwise it's very difficult. I've just been doing a lot of things. I've really more recently, of course, started doing stuff with your group of people with the MCRI, and it's been interesting to start something from ground up and see the sausage being made and how all these things happen. I think you'll talk about some of the results later and some of the different steps we went through. It's very cool to be part of that. It reminds me of when you're in the lab doing bench research, you don't know what's going to happen. You don't know what the results are going to be. Especially at least with my bench research, there's often a lot of failures and occasionally you get the success and it made all the difference. Part of the reason people do that type of research like grad students is you really want to be on the cutting edge and see what's happening, and you're the first one to see how it works. I think all the efforts we've been doing recently have been very interesting to actually take some of these networks that have been built, people that are interested, and find out concrete ways we can connect networks of doctors and patients. In some of the formats, so whether it's a Facebook forum or its Twitter people following a hashtag, it is still somewhat passive. You can ask questions and things but there's a limitation to the some of the platforms. I think with what you've done with the MCRI and had a group of well-recognized myeloma experts from a variety of areas and then a patient group and then integrated that with social media, it's very interesting and of course it's still evolving. I think it's been successful so far. We have to keep watching what happens with it. I can see if we have future years of the iterations, it's going to get even better but it's very interesting. The platforms we have today are different than they were when we signed up in 2010 for Twitter. Things are evolving so we're integrating other media like videos and sound and things into Facebook and Twitter. I think five years from now, maybe not even Twitter, maybe it's some other platform that's taken over. It's just really fun to be part of that.
Jenny: Well, it's exciting that doctors are getting on board. I'd like to ask that as a question too. What's the status of social media use for doctors? I know some might think, "Oh, I'm too busy for that," but what are you seeing in terms of growth of use?
Dr. Thompson: I don't have the analytics now but there is something that is called the Social Oncology Project 2015. There was one in 2014 as well that had some people interviewed. So a lot of people that you'd know on social media were interviewed. It's interesting they took us to a little golf cart from the ASCO meeting over to this little hotel and had a little video booth where they videoed us. I'll try to put out a post with that but it's called the Social Oncology Project 2015. So Brian Reid and Greg Matthews, Kayla Rodriguez and others really did a very good analytics. What I thought was great about it in 2014 and the 2015 version was that they contextualized it all. They talked about kind of the state of medicine, what people are doing, and then they gave a lot of really good context just besides retweets and impressions and things like that, and then they looked at analytics. I think if you look at the 2014 and the 2015, they looked at when various celebrities came out with having cancer and how that changed the conversations, some of the differences between the amount of morbidity or mortality from a disease and the funding rate. So I think especially there's a disparity for lung cancer especially. I think that's highly useful information. I can't remember off the top of my head but that has information on the number of users. Certainly, the number of physicians using social media is overall relatively low and oncologists are also relatively low, but it's increasing. I think you don't necessarily have to hit 100% or even a large number of people using it to have an impact if just some people are using it enough so that there is a source of information. We see different styles between someone like Vincent Rajkumar and Bob Orlowski, but it's great to have both of them on there giving information about multiple myeloma. And for people that subscribe to their feeds, they're getting really great information. They can see the revised ISS system or the new IMWG diagnostic criteria. They can get that information very quickly, in some cases faster than community oncologists are getting it because they're right there and they may get the hour it is released to the public. I think when I earlier started out, I was kind of trying to really get people interested, really get people signed up. I'm less interested in that now. I mean I'll certainly help people and I certainly talk about how to get started in some really good resources about Twitter 101 and how to use these things, but I'm more now about for the people that are interested to have signed up, how do they make use out of it. I use Twitter a lot and I think for oncologists, I'm probably one of the biggest users of Twitter. But other people use other platforms very well. My friend Don Dizon, he blogs for ASCO Connection and his blog posts are amazing. I think he is better in that format, which is a little bit longer format. Bryan Vartabedian who's not an oncologist but a pediatric gastroenterologist did kind of something between a tweet and a large blog post and they're succinct. He comes up with them almost daily. Every time I see them, it just stimulates me to think more. I think people, if they want to, can find what platform works for them and try to see what utility they get out of it. I think I'm less about pushing people to do stuff and just saying, if you're interested, what are some ways you can use it? How can you optimize your experience? I think my experience with patients using it is that they get a source of information from multiple sources. It's curated and it's better than like a static web site. So even you go to the Mayo site or MD Anderson or something, it's kind of static information. Now that you're doing these radio shows and I don't always catch them live, but having the transcript, that's great information. There are sometimes even things that I look back at some of your other ones. I didn't even know about some of these mechanisms. I haven't heard about them because there's so much information. It's so hard to keep track of all of it. So having people go through and curate it and say not just here's the study but I think it's interesting because of this and then seeing someone say, "Well, I don't think it's interesting," or "I think that doesn't matter." It's great. We're seeing a lot of stuff that used to happen behind the scenes of dialogue and maybe only once or twice a year at big meetings we're seeing it in real time. I think that has the potential to educate doctors, educate patients, hopefully policymakers to know that this is important and maybe can accelerate how we deal with things so we don't see trials that come up that are not interesting or not going to accrue. We might as well have that critical discussion and criticism early and adjust it. And places like Alliance, which is an NCTN cooperative group have, actually asked for crowdsourcing for information. I don't know how many trials that's led to, but we know in the myeloma community that some patients have pushed for trial concepts and gotten them into circulation and really made big impacts on how we treat myeloma in the United States and around the world. Mike Katz did that and I think he was one of the very early forces for change for being a patient advocate. Nowadays, we're seeing patient advocates like you and Cynthia and a lot of others with blog posts and communications and they're really making a huge difference in the conversations I think. Funders and companies really pay attention to that because it's changing the conversation.
Jenny: Well, I love what you're saying and I love what you're saying about also creating or receiving content. You don’t always have to contribute content but you can create profiles and then follow people. We have the Facebook groups that are general for family and general for myeloma patients, and then also subseted by disease states so like (11;14) or a genetic feature that you might have. Sometimes people just can lurk in those sites just to gain information. They don't necessarily have to post. But just doing the same thing on Twitter or watching Managing Myeloma videos, I think it's great because from a patient perspective, you're able to see various opinions of the doctors because there are various opinions in myeloma. I think what you're saying about the time to capture the information and be able to absorb it is so much faster. You're not looking at a potentially two to three-year window to read the paper later and you can stay as up to date on oncology in your disease state as your oncologist if you really want to get into it.
Dr. Thompson: There's one oncologist I know who mainly is passive on Twitter. He says that he just loves it because he sees stuff so fast. I think for a lot of people that see multiple tumor types, often what would happen is they would wait a few months after the meeting to see in the oncology newspapers that come out how people digest it and thing. Now, that comes up so fast like if you wait three months, that's like old news. This weekend I had my huge stack of journals that occasionally my wife makes me clean out, and I was looking at some of them like, "Oh, I already tweeted about this." This is really old. In paper, I might have missed it and especially if friends of mine are publishing things that it's kind of fun to see but it's amazing how fast stuff comes out and it's fun. It's overwhelming but fun.
Jenny: Well, perfect. The next question I guess would be what additional technology tools do you see would be helpful for doctors and myeloma specialists to do their jobs faster so we get to a cure at a faster rate?
Dr. Thompson: I think there are so many facets of social media and just information in general. I mean one is we talked a lot about putting information out there and gathering information. I think most people including me get more information and read it. So I think that's just helpful if there's a new finding how to disseminate that faster and as we're seeing drug reps are increasingly being not allowed access or there's not enough time for them to meet people and detail them. So we do know the drug reps change behavior so that's why they're hired, but I've never seen a study in oncology as negative behavior. So you might use a drug faster but it might be for the good of the patient. I think we don't want people to wait years to change practice. We want them to do it much earlier. I think it has that potential. But I think what we really need to change how we're working on improving therapies is by accrual. That's one of my kind of hot buttons is clinical trial accrual and trying to help people understand the role of clinical trials including phase ones and that in almost all therapy studies that there's a therapeutic intent even in early phase studies, and the statistical design isn't for that but that's one thing. We had an update with the ASCO phase one guide and statements. I think it's really important for people to know is that we're not doing clinical trials because we have a question that we're itching to get the answer for. We're really trying to help people and that there's really a systematic way of approaching how you answer those questions. To me, it's about clinical trial accrual. There's a lot of other interesting things but if we could get more people understanding why they should be interested in trials and that's doctors and patients – there are a lot of barriers with MDs understanding it as well.
Jenny: Well, I completely agree and that's why we started Myeloma Crowd Radio and we started it as the mPatient Myeloma Radio because we're impatient myeloma patients. At that standard pace of research, the research is not just going to happen that fast. Would you like to describe the tweet chat that you've created with Cynthia and describe that and how patients can join?
Dr. Thompson: Sure. What happened was I was -- and this is described in ASCO blog post -- I was at a soccer game and it was not the most exciting soccer game for my kids. A myeloma patient was asking questions of I think me and Vincent Rajkumar and maybe Bob Orlowski. This is Online Patient Communities for the E-Patient: "Betwixt and Between” a New Patient and an Expert. I said, "Oh, there are some good resources at this website and this website." And she said, "Yeah, but I'm betwixt and between being a new patient and an expert. What is there for me?" I looked at the example from the breast cancer community and the lung cancer communities and others where they started doing these Twitter chats. I said, "You know, there's so much happening. What if we start looking at that?" So I did the blog post and was encouraged by a number of people including Vincent Rajkumar Kumar and Cynthia Chmielewski, a myeloma teacher, helped me moderate them. We started with the first one on September 15, 2013 titled "Online Patient Resources and Smoldering Multiple Myeloma," and this is all about especially looking at the US ECOG study for looking at smoldering myeloma so with Vincent Rajkumar and Bob Orlowski. And then after that we looked at Induction VRD versus carfilzomib RD with Shaji Kumar. We've had a variety of topics. I think we're now up to 17. The last one was July 22nd talking about immuno-oncology and multiple myeloma with Doctors Cohen and Garfall. Before that, July 1st, we had Morrie Gertz got on for the first time and talked about the role of imaging in MGUS, smoldering myeloma and solitary plasmacytoma of bone. I already know from my interaction on that, that I started changing things I was doing at my institution. I found someone who had been followed for smoldering who actually had active myeloma and we started treating him. And then I know on the Dana Holmes' Facebook page that a patient showed this to their doctor and then got advanced imaging. I also have been putting that in my patient notes with the references for the IMWG criteria, and insurance companies have told me by reading my notes, they have now picked up on the international consensus on imaging. So I think that was a huge one for me, and I think we need to revisit the imaging issue. And then the immuno-oncology, that was one hour going through multiple areas of immuno-oncology. I think each one of those could be its own separate topic about all the different types of immuno-oncology including passive vaccination against infection. It's been huge. We have coming up in September I think Brendan Weiss is going to talk again about amyloidosis which is very interesting. We're starting to see some really interesting new drugs in that category. Dr. Hari is going to talk about allogeneic stem cell transplant which is a hot topic. You talked about that back in 2014. I think some other notable people are going to be talking throughout this fall also. It's really I think done quite well. It's only monthly. It's not a weekly like lung cancer and breast cancer do, but at least for me trying to manage it, it's more manageable.
Jenny: There's only so much you can do, right?
Dr. Thompson: I think we have good information when we do it. It might be possible in the future that we make it more frequent or that we get more structure to it with some organizations, some help doing it because it's me trying to do it in the middle of all these other things I do. I think it's been successful and we've seen some metrics showing rise in MD communications about myeloma. I've been introduced to all these different people who I otherwise wouldn’t have talked with. I mean we got just people that are really leading the charge all over myeloma of participating -- Fonseca, Landgren, Usmani, Ghobrial. I mean it's great. I would really encourage people to try to tune in when we do that. All they have to do is follow the hashtag. It's #mmsm. We're also looking for topics and we will go out of order more often or less often depending on the number of things to discuss.
Jenny: We think it's great and we've participated in it before and we would encourage all patients to just -- you could even just go to a web browser or go to Twitter and then type in the #mmsm and it will show you all the tweets that have that hashtag associated with them. So even if it's not the tweet chat per se, it's all the topics that are around myeloma. So it's a very handy hashtag to follow and really important for myeloma patients. So thank you and thank you Cynthia for helping set that up.
Dr. Thompson: After the hour-long talk, I've then made a transcript and shot that out. For people that can't make it, you can always go back and just look at the transcript or go to something like Simpler and do the filter for just that one hour, and you can get that information and then analyze it later and see what people have said. I think some of the physicians even on the calls have to do that to catch all the information that's being shot out.
Jenny: One other question, what do you think is the value of an e-patient like Cynthia or like some of the others?
Dr. Thompson: I think it's changing the equation. We have seen many things changing in society from moving from paternalistic medicine where someone comes in and says, "Dr. Thompson, tell me what to do so." So there's still a spectrum, right? I still have people that they come in like, "You're the doctor. You tell me what to do, I'll do it." And that's fine. And then I've had other people come in like, "I'm going to interview you to even decide if you're going to be my doctor." And most people are in between where they realize they're not an expert in their disease and they need help. But I think we're increasingly seeing more people getting actively engaged in their healthcare. Part of that is the cost shifting to the individual person. Part of it is understanding the complexity of therapies. When myeloma treatment was VAD and melphalan and prednisone, there wasn't a lot of complexity. There wasn't really a lot to talk about. Now, it's complex. When I've gone to advisory board meeting and stuff and people us, "How would you treat someone like that?" there's a diversity of opinions and no one is wrong. So there are many different ways to treat people. We need more information on things like sequencing and what are the goals of therapy for someone that is older that you're just trying to keep alive with stable disease and have them die of something else or is this someone young that you're trying to do a very aggressive approach to cure them and then keep the disease in remission? So it's gotten complex and we really know that we need to not only look at response rates and survival rates, but we need to integrate patient decision making and their families too. So anytime someone gets sick, their family is affected and their extended social network. I think we see this in breast cancer a lot. That's one reason there's so much breast cancer funding is because often the people affected by it have extended social networks, and the social networks feel the impact of one individual's cancer. I think as we get more patients being more involved and asking really good questions, we are seeing the game change. We're incorporating more patient reported outcomes data into trials. We are getting more nuanced in looking at things besides just response rate.
Jenny: Well, perfect. I love what you were saying about social networks, feeling the impact of their situation, because that's so true and there's so much that we can do as patients about it. So I guess my last question would be what can patients do to help you accelerate your research in a faster way and in myeloma research in general using social media?
Dr. Thompson: I think one thing is -- I try to people all about social media -- it's not a good place to ask specific questions about an individual case. So even if you're doing a chart review of someone and you have all the information available, the EMR, any records from outside sources, that can tell you some options. But to treat an individual patient, you really need to usually -- sometimes you do it by some tele-oncology things but sit with them and figure out who they are, what their goals are, what are the things that are going on their life, and you can’t see that in a chart. I've seen this in some online people, I've got this and this and this and this doctor might be making bad decisions. It's very hard to know that without understanding all the other things going on. So I try to have patients get information but don't expect you're going to get your third opinion on Twitter. Some physicians are afraid to go on because they're a little freaked out by it. I've told a lot of people that even if I'm on, like that doesn't mean just like I have a phone number, you have access to me but don't abuse access and to not be demanding. Everyone that gets cancer, it's a tragedy for them but it's a large number of people. So you can't be demanding that, for instance, every single person have a fundraising for that individual and that you push out to the whole network. I think the important things are to be engaged, to be educated. Go to your physician and ask appropriate questions. And then you've got to talk to people. I think we really need more talking to our legislators -- senators and representatives and leaders -- and say, "These are the questions that need to be asked. We need to look at value in this context." I think if we're going to get more funding for research, we have to have our leaders understand that we have an infrastructure. We need to move forward at any pace and to move faster, you need more infrastructure and support for doing things like having research nurses in rural places. That's hard to do. As we know that in community research, about 85% of cancer patients are treated and is now we have the aging population. Gas prices are lower now but when they were high, people would not go to all these major cancer centers because it was too far and they needed family members off of work and a whole bunch of other issues. I think we need advocacy and I think we're seeing that especially in myeloma.
Jenny: Well, perfect. We're so grateful for what you're doing for it. As part of this show, I wanted to invite some of the patients that are active and highly educated patients that are on social media platforms to jump in for a minute, if you don't mind, and to help us understand from a patient perspective the work that they're doing and how it is benefiting themselves and also how it's benefiting other patients if that's okay with you.
Dr. Thompson: Oh, it's great.
Jenny: And I think a perfect person to start with is Cynthia. Cynthia, are you on the line?
Cynthia: I am. Can you hear me, Jenny?
Jenny: We can hear you. So Cynthia helped Dr. Thompson start this tweet chat. Her Twitter handle is @myelomateacher. She tweets regularly about myeloma topics. Cynthia, do you want to share with us how the work that you have done has helped both yourself and other patients?
Cynthia: Sure. I guess I kind of started on Twitter just kind of a fluke. I was watching a TV show with Kathie Lee Gifford and she was talking about Twitter. I did and actually I didn't like following them, but I put in the myeloma hashtag and I found all this information. So at first, I used Twitter for me to learn up-to-date information. But once I was gathering a lot of information, both on Twitter and other online resources, I decided I needed to not only gather the information but share what I was finding. So I kind of shared both on Twitter but also I would gather information on Twitter but share in other areas like on Smart Patients or on some of the patient online communities because not many myeloma patients are actively involved in Twitter. I kind of used Twitter as a place to get the latest up-to-date information, to share that there in the community. Then I started working with advocacy and found that Twitter is a great way to get out some ideas about what patient advocacy is and what kinds of topics that we need to bring out. I guess the success story there was one day I was tweeting about chemotherapy, chemo parity laws and in Delaware they need to talk to the Senate to see about their experience with chemo parity. I tweeted that out not knowing if anyone saw it and a couple of months later somebody from the IMF told me that a patient saw that tweet, responded to it, and talked to the Delaware Assembly, and lo and behold like the next week the chemo parity bill was passed in Delaware and that patient was invited to the findings. So that was a story but I don't always get the stories. Sometimes not until weeks or months or even a year or so later somebody comes up to me and would say, "Oh, you're the myeloma teacher. Because of one of your tweets, we did this or did that." Just a last story about how Twitter helped some people was, I do a lot of mentoring to patients. Once one of the mentoring organizations that I worked with asked me if I knew anyone who's spoke Spanish to mentor a patient who is very scared and was going through a stem cell transplant. I personally did not know any and asked if it was okay to tweet that request out, which they gave me permission to. After I tweeted that request out, within an hour, I had four people that spoke Spanish that were willing to mentor this patient. I just see so many uses of not only Twitter, but other social media platforms.
Jenny: Oh, perfect. Cynthia, those are great examples. Well, thank you so much for all you do, Cindy.
Cindy: You're welcome.
Jenny: We hope you continue doing it. We hope you will all follow Cindy on her Twitter handle because she tweets really, really relevant information. She is also part of the Myeloma Crowd Research Institute Patient Advisory board. So thanks, Cindy.
Cindy: You're welcome.
Jenny: One of the other members of the advisory board is also Jack Aiello. Jack, I'll give a little intro for you but you might want to add to that. Are you on?
Jack: I am.
Jenny: Okay. Jack has had myeloma for about 17 years. Is that right, Jack?
Jack: Twenty years.
Jenny: And has been very, very involved in myeloma education and has also been advising different institutions about how to create and craft clinical trials. So Jack, do you want to share experiences that you've had with your interaction with other patients in terms of helping them through their myeloma journey?
Jack: Well, I've had lots of interactions with patients, mostly by phone or by email or in support groups or talking with them face to face or in meetings. I haven't had much with respect to Twitter because I'm not really a tweeter.
Jenny: That's okay.
Jack: I have a tweet address. I follow people. I find it a little bit difficult to follow conversations on Twitter or get into any kind of depth. I always wonder -- I mean Dr. Thompson, for example, I know you are so busy and yet I'm seeing tweets appear live while you're talking. I don't know how you do that. I'm always more for I guess the watching things go by. I've been involved a little bit on some of the tweet chats. I do find them again a little bit difficult to follow even though I consider myself very well educated from a myeloma standpoint. I think there are many tricks, as Dr. Thompson mentioned, that I don't know about yet whether it has to do with getting transcripts or looking for conversations over that hour and things like that. I guess that's my limited experience.
Jenny: And other social media? Because I know there are videos and teleconferences and webinars and so many different ways to learn more about myeloma in a digital space.
Jack: Yeah, there are. The IMF websites, Patient Power website, MMRF all have good video interviews. So it, in part, depends on how people are learning. You can tweet out those URLs as well in terms of figuring out where to find out about this information. I know Patient Power is very good also about using Twitter to communicate the newest videos that they've posted.
Jenny: Perfect. Well, thanks, Jack. I would also like to have Pat Killingsworth join us because Pat has been blogging about multiple myeloma daily for about the last five years and always shares relevant research information and also some of his experience and is always willing to help other patients through their myeloma journey. So Pat, how has social media use been great for you and also good for others that you share information with?
Pat: Hi, Jenny. You know one thing we haven't talked much about is Facebook. I was not a big Facebook person but I'm amazed by the myeloma-related activity that I find on Facebook, online support groups, and just people asking questions and responding to my posts and things. Maybe that's because Facebook tends to be a little bit of an older demographic than Twitter, but I just don't want to forget about that. I think Facebook is an excellent resource for people.
Jenny: I think all the resources are excellent resources. I mean Twitter is just one, right? So Facebook is another and the online webinars, our website, the radio shows. There are so many different forums now that people can get online, which makes me think that it's perfect for people in rural communities, like Dr. Thompson was saying, that it's so hard to get to them. Pat, I know a lot of people have had experience with you helping them through. Is there a specific example that you'd like to share with somebody sharing information with someone that made an impact for their myeloma care?
Pat: Oh, my goodness. There are so many. One thing that surprises me is the international number of emails and responses that I get from people from New Zealand, England, Canada. It's truly brought a world together. I think that can only help. It's interesting learning about therapies in other countries and how they're different or the same. I find that really interesting.
Jenny: Okay, great. Well, you can follow Pat's blog at multiplemyelomablog.com, right, Pat?
Pat: It's long and it's not very imaginative but it was a good guess, so yes.
Jenny: It works. Great. So thank you so much. Pat: Thank you for all you do, Jenny.
Jenny: Oh, thanks. We also have online with us Gary Peterson who has the multiplemyelomasurvival.com website. So Gary, do you want to share an experience that you've had with your own experience and helping others?
Gary: Thank you so much Jenny, and for all that you do with this program. I think one of the things that’s great about is that it has such a great interconnectivity. I’m not sure where this came from – I’m not sure if it’s from your website, or my website, or Pat’s or from Facebook or from Twitter, but I got a message from someone and this message was one that kind of really ripped my heart out. I’ve had trouble getting through it in the past, because it’s one of those that’s so touching. It read by a woman named Alicia who put it on my website: A close friend who is only 25 years old has been diagnosed with an aggressive form of multiple myeloma. Doctors are wanting to start aggressive treatment. She has three beautiful boys and a family that loves her so much. She has decided that she wants what life she has left, to be without going through chemo or transplants or anything. I am at a loss for words right now. I'm looking for any advice or information that I could pass along to her. She deserves a fighting chance to live a long as life as possible. And obviously I wrote her back and told her about a lot of people who have had success, and also asked two people who were high risk – one of which is Nick Van Dyk, and another of which is Suzie Rose to contact her. Later on, they got back to me and wrote to her. In addition, a young lady who read the website - Again all this interconnectivity is so great and is how I met you, and how I met Pat Killingsworth, how I met the other people on this panel, so it’s such a strong and important communication. She wrote a comment for this 29-year-old friend and she says, “I was diagnosed at 39 with Stage III multiple myeloma and genetically tested with chromosome 13 deletion, which basically cuts my survival rate in half. I have two young boys who are my life. Was it even a choice for me? I had to fight this battle for them. I was blessed to live close to one of the best hospitals - Weil Cornell in New York City. I had an auto stem cell transplant (my own cells) to put me in remission for 6 months and now the docs have decided it’s best to maintain the disease through light chemo which is Kyprolis and Pomalyst. I don’t even feel like I have cancer. My hair is still, my weight is the same, I still exercise. We all have side effects to this disease that they keep their eye on, but bottom line, this disease is maintainable, I don’t think about it, hoping to give it the “placebo” effect. Please tell your friend to not give up. It is doable. If she does decide not to treat it then it will just be a matter of time. My prayers are with her and for you too for looking out for her. So this interconnectivity. And I’m hoping that the power of the internet can be used because we know that 80-85% of the patients will not be cured according to the myeloma specialists and statistics and 10-15% are cured. That means we need this high-risk cure without which we are all destined for the same end point. So hopefully through this medium, social media, and through the support of all myeloma patients, somehow, with God’s help, we can find a cure and be rid of this once and for all and you’re initiative in my opinion, is our last best chance.
Jenny: Thank you so much Gary, we’re just so appreciative for what you do. I know you help patients all the time and clearly, with that example, what you are helping people do is having a real impact, true impact on what matters most, which is sustaining and improving our lives.
Gary: Well, thank you for everything that you are doing.
Jenny: Okay, we have one more patient that we'd like to include and that is Lizzy Smith. She has been helping with the Myeloma Crowd site on a very extensive level and writing many, many articles that you all benefit from by reading those. Lizzy, are you there?
Lizzy: I'm here. So Gary, I have so much to say for your comment. When I was diagnosed, I was 44, a businesswoman woman and I had young children and I was in a failing marriage. Everyone is diagnosed differently and right away nobody is going to fight it. Everyone does that. That's something that I've learned so keenly with my involvement in the myeloma world. I started blogging because I thought that survivorship support was severely lacking in the cancer world, that doctors are pretty adept at treating the physical disease but not the emotional side of the disease. I started writing my experiences of navigating a very contentious divorce and tandem stem cell transplant at the same time with a move. I have connected with so many myeloma survivors out there and so many have drawn strength from my experiences and my approach to life. I'm not saying it's easy. I fight this disease every day just like the rest of us and sometimes the side effects and the fear and all of that kicks in. I think what we need to try and tell other survivors is that while it's really tough, sometimes when we're being treated it's really, really hard but they're long lapses in treatment schedules where we can forge a pretty meaningful life. I've approached my myeloma as I'm going to live bigger and grander and with more purpose than I ever did before. Every time I could do something really awesome, it was like stepping on cancer and that I wasn't going to let it control me and that every single day I was going to try to do something awesome and that I loved. I've managed to do that so far. It's a battle every day and it's a choice that we must make. She could be in depression and shock and all of those things. I think you know if you want to send my contact information to her, I'm happy to chat with her. But I do think that especially with children – I’d hate to tell everyone that I have the answers, but it's possible to fight it and it's possible to once again to that really awful stage to still find a great life out there. Even between my two stem cell transplants, I was able to take Amtrak across the country for 17 days and travel and go have a lot of fun, and then I came back into my second transplant and six months later I went to Europe. I've done a really great things. I think the more that we can share with others and social media is such a great way to do that, that you can live with this disease on some kind of level, I think that can really help others.
Jenny: I agree, Liz. We're just so grateful for all you've done. I think to Gary's letter, how serious that Gary and Pat and Liz and Jack and Cindy take their service to their fellow myeloma patients and friends. We really consider everyone as our true friend and co-fighter. As you can hear, we really take it deeply. So Liz, thank you so much for sharing your experience also. With that, I would like to thank you all for participating. I would also like to invite you to now discuss our big announcement with us. We have a very big announcement to tell you about today. The Myeloma Crowd Research Initiative is just what Dr. Thompson talked about earlier in our discussion. It's the very first time that patients as united group have joined together to help push research forward, and that connection between the doctor and the patient is something that is truly unique and remarkable. As you can hear from the letter from that patient and from all of us, we are very motivated by our will to live and our love for our myeloma friends to do whatever it takes to help find a cure. We built a Scientific Advisory Board of some of the best doctors in myeloma from top facilities: Dr. Ola Landgren from Memorial Sloan Kettering Cancer Center; Dr. Irene Ghobrial from Dana-Farber; Dr. Noopur Raje from Mass General; Dr. Fonseca from the Mayo Clinic; Dr. Orlowski from MD Anderson Cancer Center; Dr. Guido Tricot from the University of Iowa, and; Dr. Mike Thompson from the Aurora Cancer Center. And then we built a patient advisory board from the highly educated patients that you've heard from today who are using social media on a regular basis to share their knowledge with others: Jack Aiello, Gary Petersen, Cynthia Chmielewski, Pat Killingsworth, and Lizzy Smith and myself. Together we decided to go after high-risk myeloma because patients with these aggressive genetic features or who are at the end of their myeloma journey with disease that's not responding to current treatments, they need help. These patients need new therapies today and we don't have three to five years to wait for a lot of new therapies. We invited researchers around the world to submit proposals and we received back 36 high quality projects. Then our Scientific Advisory Board narrowed it down to ten proposals. We did a Myeloma Crowd Radio show on each of the ten so you could listen in and now we have both boards who have gotten together and voted on the proposals. We had a difficult time choosing. And because we are just getting started, we have decided to select two proposals. And after we're able to fund them for $250,000 each, we will add a third and a fourth. The number of proposals that will ultimately be able to fund is really up to you. Choosing out of this group was so challenging because each of them offers very important research and it just shows how much great work needs our support and our funding. So the first that we've selected is a proposal for CAR T cells by Dr. Einsele and Dr. Huedecek from the University of Würzburg in Germany. Now, CAR T cells therapy is one of the newest and hottest ways of helping patients particularly those who have relapsed in leukemia. They used this CAR T cell therapy for a patient who had relapsed within weeks of an allotransplant or a donor transplant. She was given these CAR T cells and has been in remission for over three years, which is just really remarkable. How it works is you have blood samples taken out and your T cells are removed. Then they are engineered to target specific proteins. We like this proposal because they were selecting two proteins: CS1, which is found on the top of myeloma; and BCMA kind of as a backup, which is also found on myeloma cells. This will be for relapsed/refractory patients who are a high-risk situation and also would be appropriate for patients with high-risk genetic features, but it's also just as applicable to low-risk or standard- risk patients. We like it because it's going after two T cell targets instead of just one. The doctors we feel have also thought of absolutely everything. They've been doing immunotherapy for a very long time and have thought of a contingency kind of emergency stop button because CAR T cells are very powerful, but also sometimes you have to be very careful with the responses that you get. So they have thought of that and best of all they're willing to donate some of their own research dollars to the project so we can together advance it at an even faster rate. Our second proposal is from Dr. Ivan Borrello of Johns Hopkins University School of Medicine. He has created a patient-specific immunotherapy. The first proposal is also patient-specific. So what's being engineered is just your own CAR T cells, very specific to your disease. Dr. Borrello found that instead of taking a sample out of the blood, the patient's bone marrow was more indicative of their disease. So for truly personalized medicine, they take a bone marrow sample. His work extracts T cells from the bone marrow in an individual patient, expands them out a hundred fold outside the body in the presence of the tumor cells so they can recognize them, and then after an autologous transplant, which is your own transplant, your own stem cells, gives them back to the patient. When they are reintroduced, they target the hundreds of protein that could be causing tumor growth for that patient not just a single protein. So this is the first time that T cells are being taken from the bone marrow instead of the blood to target the tumor cells more specifically. It is for patients who have not already had a transplant so they can have prior therapies but not a stem cell transplant. We like it because potentially it's something completely new, and it's also something that could potentially take care of your individual kind of myeloma. We hear all the time that myeloma is so different and even an individual patient can have up to five different types of myeloma in their system. This would be able to address that. Right now there is an open clinical trial for this research project, and they're allowing high-risk patients with high-risk genetic features to join that trial. So we will be posting with more detail on these two today, but this is the very first announcement for this very exciting project. It's truly the first time that patients and doctors have joined together to identify and vet and find and fund a cure for the most aggressive forms of myeloma. To show your support today, you can get started by creating your own fundraising page. If you go to mcri.myelomacrowd.org and click on "Create a Fundraising Page," you can upload your own photo, write your own text to customize your page, and this is a way you can ask your friends and family to support the discovery of a cure so you can take that important step today and be ready. We will be adding photos and descriptions and videos in the next few days and weeks. We are very, very excited about that. Dr. Thompson, we are very happy that you have joined with the Myeloma Crowd Research Initiative or the MCRI, as we call it. I will let you close with any comments that you'd like.
Dr. Thompson: I think what we're seeing here in social media is an evolution – in the beginning of Twitter people to take a picture of their food and posting kind of trivial things. And like any new technology or any new social development, it's adapting and getting more sophisticated and more nuanced. We're seeing people that are really developing networks of individuals and groups that help him cope with currently for most people, incurable illnesses. I now tell my myeloma patients that this is currently not curable but in a fraction of people we are curing and we don't know who and how but in the future it might be curable. One of the hardest parts is some people can do very well for a long time and the high-risk people tend not to. I think this is one way we can make a major impact. I'm really happy that you found me and got me involved in this because it's been extremely interesting and fun and challenging. I think it's just a lot of potential.
Jenny: Well, thank you so much. Thank you so much for treating myeloma patients and for all you do for that disease community because that is who we are. We're trying, as you heard, to just survive and really thrive so we can live fulfilling lives. Dr. Thompson, thank you so much for joining us today. We really appreciate the work that you do in spreading social media and spreading the messages and information and accrual to clinical trials and everything that you're doing for myeloma patients.
Dr. Thompson: I'm happy to help.
Jenny: Thank you again, and thank you for listening to Myeloma Crowd Radio. We believe that patients can help accelerate the discovery of a cure, and we encourage you to become involved.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.
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