Todd Kennedy:
How can I stay positive during treatment? Hi, everybody. I'm Todd Kennedy. I am a support group leader, a research advocate, and I've been living with multiple myeloma for over seven years. Today, I'm going to share some of my perspectives on some of the most researched questions on living with multiple myeloma.
Well, let's take a look at the number one question. Advice for newly diagnosed myeloma patients. I would say my number one tip is to have hope. Have hope that you can live a wonderful life with myeloma. I am not talking about blind hope or false hope, or sometimes it's called toxic positivity. That's not what I'm talking about. I am talking about justifiable hope. It's hope based on the incredible amount of new treatments that have become available for myeloma patients. It's justifiable hope based on the over a thousand clinical trials that are currently ongoing or are currently recruiting and are getting us closer and closer to cures.
If you let that justifiable hope inspire you, it can be the catalyst to taking some really important actions. The first is to get educated on the disease, and then, get connected with other myeloma patients and the community overall, and then, let that education connection inspire you to be empowered. The IMF can help you with all three of those important steps.
Let's take a look at question number two. Best resources for myeloma patients. When you think of resources, sometimes you're thinking about things. I would say, my answer to this is that the best resources are not things, they're people. Perhaps one of the best resources I would point you to is to get a myeloma expert on your care team. By an expert, I mean that's typically a hemoc and somebody that is either directly involved in myeloma research or is following it very, very closely, and they're seeing a lot of myeloma patients. The reason that's so important is because the science is advancing so fast, and coming up with a personalized treatment plan really is a bit of a science and an art. If you've got a myeloma expert on your team, you can work with them to come up with a personalized treatment plan that helps you meet your goals.
Then, the other human resource I would say is other myeloma travelers. Other patients get connected to other patients, because they can help lift you up. They can guide you, they can teach you so much along the way. The best resources, I would say, are people. But if you're looking for material and educational content, of course, you can go to myeloma.org and learn a lot, and learn so much more, there's so many great resources there.
Let's take a look at the third researched and searched question. How can I stay positive during treatment? Now, that's a great question because it is super, super easy to go into a dark place at various points in your journey. I would just say, personally, what I find is if you can just try and pause for a minute, catch your breath and look for, and maybe even create those moments to be grateful and those opportunities to celebrate, and in myeloma, there's certainly a lot of those. If you're newly-diagnosed, it could be at the end of that first cycle of treatment and you come through that and you say, "This wasn't as bad as I thought."
Or same case goes if you're on a new treatment plan from relapse, and maybe after those first results come in, whether they're labs or images and you say, "Oh, my gosh. This stuff is working." Or it could be that you go through a rough patch and on the back end you just reflect and you say, "You know what? I'm stronger than I ever thought I was." Or maybe it's the silver linings of the people that you meet along the road. There are so many reasons to be celebrating and to be grateful on your myeloma journey. And it's not just about myeloma. I would say, you can stay positive by looking for those opportunities in life. Big moments, small moments, maybe it's just a walk out in nature on a beautiful day like today, or it's the big moments like anniversaries and birthdays and grandkids and vacations. It's just a matter of you could stay positive by looking for those opportunities to celebrate, to be grateful, and maybe even just seeking out ways to create them. That's how you stay positive on a long journey.
Let's see number three, or number four, I guess it is. Coping with anxiety and stress. I guess that goes with the 'how do I stay positive' one as well. My tip on that one, I think, would be to say that myeloma is not just a physical challenge, it's a mental one as well. It's important to recognize that at various points in time, anxiety and stress is totally natural. It's part of the journey. And I think, in that case, just try and again, catch your breath, pause and know that it'll come in waves and just try and redirect that anxiety and stress and get the help. It might come at normal times of newly diagnosis or relapse, but it also can come at the most unexpected times. Get connected with other people that are on the journey. They can help you through those tough times.
If you think things are pretty good, I found it's helpful to be proactive too. Build that support network for so when the inevitable anxiety and stress comes along, you are prepared. You can talk to your cancer care team. If you're struggling with anxiety and stress, sometimes they'll ask you how are you feeling physically, but they may not ask you about how you're doing mentally. Feel free to speak up and ask, say "I'm in pain up here," and get the support you need. There is no stigma in mental health. There's no reason to suffer. Speak up, get the help you need.
Let's see what's next. Unexpected challenges with myeloma. Oh, my goodness. I thought when I was first diagnosed that it'd be a linear journey, because I had read all the IMF stuff and I thought, "I know exactly how this is going to play out." That is not the way the myeloma journey works out. It is ups and downs. It's unexpected challenges, but it's also unexpected opportunities as well. I think it helps if you just recognize that there will be unexpected challenges, so expect the unexpected. There were times in my journey when a treatment didn't give us the results that we were hoping for, but the amazing thing was, as much as we were upset at the time, in hindsight, we looked back and said, "That was an opportunity," because it opens a door to a new treatment plan that gave me better results and even better tolerability. I think just expect the unexpected and try, and as you're planning for that, realize when those moments occur that it could be opening the door to better days ahead.
Let's see what's next. How to stay updated on the latest research? Well, that's a tricky one, because the research is changing super, super fast. It feels at times like you're almost drinking from a fire hose. But that is a great problem to have. There's no one treatment, there's no one myeloma patient, there's so much variability. How do you stay on top of it? Well, I think that the coolest thing is that the IMF is a great source for a steady stream of educational content regarding that latest research. I know, personally, taking some of that complex science and making it relatable and patient-centric can be tough. But there is nobody better, in my mind, than the IMF's own chief medical officer, Dr. Joseph Mikhael. Dr. Joe, you know him, you love him, because he takes the most complex science and he makes it so simple, and he's got a metaphor for everything, and I love it. Every time I see him on an agenda for a live event or I see him on an educational video, I always tune in, I hope you do the same.
The other way I like to stay on top of the science or anytime I have a question about myeloma, I don't go to Google first, I go to the IMF's AI-driven chatbot, Myelo. If you haven't done that, I highly recommend you check it out. I type in whatever question I have about a new trial, about an outstanding question, and I'm always blown away by the accuracy, the timeliness, and just the ... it almost feels like there's a human typing back to me and just the sensitivity of the responses plus references down below. I find it to not only be accurate, but a very efficient way to stay on top of this rapidly evolving myeloma landscape.
What is next? How to balance treatment and family life? Now, there's an important question, of course. And I think a balance as like that typical scale. You've got myeloma over here and you've got life over here. I think when you're trying to balance it, you have to realize that it's not a steady state. That balance is always going to be moving. At newly diagnosed or at times of relapse, the time and the energy is pulling that scale way down in the area of myeloma, and that can be a really tough time. When you're stuck in it, you think, "I'm never coming back." But if you realize, as those treatments start to work and you start getting control and you start getting into the groove, the balance starts coming back in check. And then, when you have that sustained remission, it's quite possible that the scale starts tipping towards living life fully and not even really worrying about myeloma that much.
Again, seeking out those opportunities and those wonderful celebrations and life swings way towards the family life side. But over time, that balance does start to work out. With that positive perspective, with an expert helping you guide it, you can get there and you can balance work and life.
Those are some of my perspectives after seven years of being on this journey. I hope there's been a pearl or two in there that's helpful for you or your loved one as they're going down their path. If you would like to learn more, you can always go to myeloma.org. You can find helpful information, great resources, that's where I turn. You can find amazing events. You can find out where to get in a support group. If you don't want to read stuff and you want to just talk to a live person, call the info line. I've done that, they're terrific. They'll point you to the resources and things you need.
If you're just looking for a daily dose of hope, there's a lot of stuff on social that the IMF is putting out, whether it's on Instagram, on X or on Facebook. Go there, check it out, and I wish you great health, happiness, and great joy on your journey down the myeloma path.
