Dialogues in Multiple Myeloma: Episode 6—Actionable Advice for Taking Control of your Journey

Andy, who was diagnosed with multiple myeloma in 2013 and frequently mentors newly diagnosed individuals with multiple myeloma, shares common advice that he provides to his mentees for taking control of their journey. 

Transcript

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In the last episode of Dialogues and Multiple Myeloma, we met Andy, who was diagnosed with multiple myeloma in 2013 and frequently mentors newly diagnosed individuals with multiple myeloma. In this episode, Andy shares common advice that he provides to his mentees for taking control of their journey.

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It's important to take control of your situation and your medical treatment. For multiple myeloma patients, that can be difficult at first because it's not a well-understood disease, and many of us never heard of it before we were diagnosed. So there's the what I call the educational period where you have to avail yourself of all the resources that are out there to try and learn what is multiple myeloma, what are the treatments, what are the kinds of things that your doctor is looking at to determine whether the treatments are successful, and what you can do through educating yourself to try and assist the doctor in making the right decisions for you. And through all of that, you are better able to take control of your situation. And it really helps to relieve any anxiety that the patient has. So when talking to a newly diagnosed patient the first time, there's several things that I stress which I think will help them get control of their situation. One is make sure you have a multiple myeloma specialist. Things are progressing so rapidly in the multiple myeloma treatment world that a general hematologist-oncologist can't possibly keep track of it. And so you need to have a specialist. And even if you're there's not one near you, you can have a local hematologist-oncologist and then consult with a myeloma expert in another city. And most of the time, the way that works is you go down, you have the appointment, then the rest can be done virtually. So getting an expert is extremely important. The second one is education. Most of us, when we're diagnosed, don't know anything about multiple myeloma. And if I would ask someone, a newly diagnosed patient, uh, how are you doing? And what are your numbers look like, they would think I'm talking a foreign language. So you have to educate yourself on what these numbers mean and what your doctor is looking for. And then beyond that, to also educate yourself on all of the rest of what's going on in the multiple myeloma world. So you can ask the right questions when you go to see your doctor. It's important that myeloma patients remain current because the field is changing so rapidly. Um of the things I use, and a good place to start, is something called Google Alerts. Um if you're not familiar with it, you can go into Google and search for Google Alerts, and you can set an alert for anything you want. You just put words in the box. Um, setting one that's just multiple myeloma, I think, is a good place to start. And every day you will get an email from Google that will have a list of the articles, abstracts, scientific studies that have been published on the internet since the last time Google searched, which was probably yesterday. Um, and you can go down through those and click the ones that seem like they have information that's important to you. Um that's that's a tremendous way to stay current on what's going on in the multiple myeloma world. The other way is to um go to various organizations. There's a bunch of organizations that foundations, for example, that do research in multiple myeloma. You can go to these websites and sign up, and they will send you information periodically. Or you can just go to those websites once a week and see what they have. Um, I'm not sure exactly how this works because I'm not um an internet scientist, but somehow by doing all of this, I've gotten on all kinds of mailing lists. And so I'll get uh emails from various organizations and some organizations I've never heard of with multiple myeloma information. And so as you work your way through that, you will just naturally have more sources of information. One thing that I talk to other myeloma patients about in every conversation I have with them is the importance of staying active. And what I mean by that is not any one set of activities. Uh, it doesn't mean you have to be a runner or a cyclist or a gym rat. It just means doing as much as you can to be active. It's been proven that patients who are active do better than patients who are not. And what I've seen with many newly diagnosed patients is they almost become paralyzed. Some of them physically are in a difficult situation, and I understand that. But as you get treatment, um, it will help you recover from the physical symptoms that you are suffering. And so to then start back and being as active as you can, whether it's walking around the block or playing golf or riding a bike or going to the gym, whatever it is, it will help you deal with the disease. It will help you deal with side effects from treatment, and mentally it gives you a boost. Um, so I can't emphasize enough the importance of being as active as you can be. The next thing we like to talk about is making your doctor's visits as effective as possible. And the way to do that is to prepare, to understand what's the purpose of this appointment, and to make a list of questions that you are going to ask your doctor and not let him or her leave the room until you get those questions answered. Um, and chief among them are doctor, I have all these results, all these blood test results and other scans and so forth. What are you looking for to determine what's my situation and whether the treatments that I'm getting are working? Uh, and so once you have a grasp of those things, you can really play a part in your healthcare journey, um, which is really, it should be a team effort between you and the doctor. It's not the doctor telling you what to do, and then you just blindly go and do it. The two of you have to be on the same page and be making these decisions together.

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Stay tuned for more episodes of Dialogues and Multiple Myeloma.