Chordoma Survivorship and Rehabilitation Medicine

And hope to, um, once pediatric version of the board and college, we hope to take that same model and make the deal to more patients and more agents. Um, so, uh, yeah, we're looking forward to all of these, um, things in the coming years. So our final figure, um, is that we can't rehabilitation medicine specialist at Moran Snow Gattering Cancer Center Dr. Herbert specializes in helping people manage the neurological and physical effects of cancer and treatment, um, with the goal of improving functioning quality of life. And she's an integral member of the Cordoma team at First Getter Inc and has being so many Cordoma patients. And she's become an invaluable partner to us as we work to strengthen survivorship care for people with Cordoma, and you know, big things coming in that area as well as we're happy to help about her. Thank you so much, uh, the Verdova Foundation for allowing me to be here, and thank you to all of you. You're actually my inspiration. I am a retime medicine physician, also known as a physiatrist. We can confuse a psychiatrist or a diagram, so sometimes I do that as well. But in the realm of refined medicine, I specialize in final food injury medicine. I thought that I would take care of patients with traumatic final food injuries, and that's where my academic clinical pursuits would line. But as a resident, patients at Memorial really changed my perspective. Um, made me think more about an optionatic file for the group that made me think more about cancer patients and how they didn't have voice after I was a resident, even as a fellow. Um, they had voice in some other cancer areas, but not really so much when it came to the central nervous system. Something that bothered me, you know, something that I truly wanted to change. Um, and I've been fortunate to be part of the multidisciplinary team at Memorial. Um, and I should be unthankful to the opportunities that the Ferdona Foundation has given me as well. Elements dates that I assume to education with optimistic products, so we won't be talking about that here today. I want to start by highlighting, um, this actually came from surveys of Cordoma patients. Really about your systems. I want to validate, I want to normalize it for you. If you think about where Cordoma arises product, it really does make sense in terms of systems that you're having. When we think about the mobile spine, we're thinking about the net, the mid part of the back, and even the lower part of your back. What's in those areas? We think about the spine also. We think about the spine core that sends signals from our arms and our legs to our brain so that our brains can make decisions and our mental actions. We think about the nerves that go into our arms and our legs. We've heard some of the same floor and going through all tangled up. What does that mean? When we look at patients who, you know, resident throughout ship rooms and terms of a mobile sign, since assuming that chronic pain, difficulty walking, chronic fatigue, depression and anxiety related to this, you're rendering common determinants, difficulty sitting. And I know that's things that a lot of the people in this room do experience. Looking at the big growth processal region, we expand that even further. Again, if you think about it, you're thinking about your bottom, which is where you would be sitting. Thinking about those nerves that are going down into your leg pain, for you know the impact that the tumor or treatments can add on your endings. Balance blowery problems. Um, I have patients, and I think this is one of the biggest things when I see patients with fico cordomas, and I'm fortunate in a way that our surgeons come to me first before any treatment. So we have conversations of what may, what things may look like. What does that mean and what can we do about it? Um, I had one patient who told me since before I had my son, and she had this thing that she was gonna be folly trained for him. And that was so cool. And every time she saw me, she was like, how do we do it? Because that was her goal, that was something that she really wanted to work towards. And I tell patients all the time, it's a lot harder the second time around. We are so young. And it is a challenge, but it is something that we can address. Sexual dysfunction is also, um, something that's very important. I feel like it's not something that everyone seems to speak to people about. Um, I credit the American Association of Centrix and Metropolic and File injury medicine in general, where they did say that we should be having this conversation with all patients of childbearing age. And it is important, and I think we should be having it around those age groups as well, too, especially for those who are in relationships or looking to become in relationships. Other things that we may see are she, again, deciding discussion. Um, more, you know, parents related to bowel involvement, limited mobility is kind of balance to parents. And these are all big challenges. And they're things that I encourage you to bring up as you're experiencing them, whether it's favor you're presenting system or something that currents during your treatment, or things that are later in after. Moving up to the skill base, um, now you really start to think about things involving our cranial nerves, involving our brain, involving the opposite portion. Of our spinal cord. We also have to think about things that are in that area. We think about our airway. We think about our esophagus, our ability to follow, we think about our hearing. So a lot more of the symptoms that we see in this area are going to be related to that brain in those areas that are involved. As I already alluded to, some of these symptoms, you know, they may be much brought you or much give that diagnosis. They may be something that occurred during treatment. They may be something that processed. And they can have a really significant impact. I mean, very early on, we think about your multidisciplinary team as potentially being your surgeon, your radiation ontologist, your medical ontologist. And they're really what's driving a lot of your care. And a lot of the early conversations really are about treatment and treatment decision making. And I was like, I think that. But I don't want you to forget these concept of system. And I don't want you to forget that you can advocate and you can ask questions about them. I want you to encourage, or I want to encourage you to expand your multidisciplinary team. It does not just have to be those who are treating you. There are more people who want to be involved. And I truly appreciate the fact that in the most recent guidelines, it really spoke about your rehabilitation intervention. And it really allows us to put the kind of things that we could do there. Think about having to decide you. Think about physical and occupational therapists. Perhaps thinking about a supportive palette care provider, thinking about the nurses who are taking care of you. Oftentimes they are your best listeners, and they listen to everything you're saying and can be really strong advocates for you. And then also thinking about, you know. Other types of pain providers are, you know, that could be involved in helping with the sentence that you're experiencing. We actually call our pain providers instead of being palliative care, they now actually call supportive care, and the reason being is they want us to be involved very early on, not just at end of life. So within this desire to, I kind of already alluded it to, um, our specialty is physical medicine and rehabilitation. I am unique in that I'm also subspecialty trained in final quarter medicine, and for some, I might be the right psychiatrist. For others, start to think about your symptoms and who might be right to. Pesiatrists like me exist all over the world, and I'm working very hard as Joseph Ferdow Foundation to identify these providers. We successfully found providers in Italy for patients. Very recently, which I thought was a really wonderful experience, and we're hoping to do more on that. But we do have the diagnosis who specialize in brain and free medicine, so they understand a lot in terms of the brain and manial nerves that are involved and the types of rehab that might be helpful for them. There's others that specialize in cancer rehabilitation medicine. So one of my other roles at Memorial is I run our cancer rehabilitation medicine fellowship. So we're training desire to truly understand cancer, cancer's impact, and how we can incorporate rehabilitation medicine principals. Really thinking a lot about what does the cancer piece of things mean, what does treatment mean, what does it mean about the things that you can do, what kind of precautions should we put in place to try to keep you safe? But really what the goal is: we want to, you know, focus on quality of life. We want to help you do the things you want to and need to be doing. There are actually pediatrics beside. Um, I have a wonderful colleague at Memorial. Um, they do a great job of understanding development. What does it mean when you're treated very early on? Maybe we can't answer all these undergraduate questions. Um, but what does it mean in terms of development? Where should somebody in development, and how can we help them accommodate, um, as they're growing into their adult years? And then supporting medicine. Probably not like you guys are thinking about a lot of times during your treatment, but as I heard numerous times without note, if you're running marathons and hiking and doing other sporting activities, these are designed to truly understand what experiments mean when you're wanting to get back to those activities. So your survivorship loans, they may be some of that really coming handy for you. We do a lot as listening. You listen to your systems, you're happy for your diagnosis, systems you're developed during, how things have changed. We look at your neuroblock as well and muscular skeletal system. So are you unique? Can you feel things? Does it feel different? Are there anything that we need to know about your scalatal system? And we put that all together to try to really understand, you know, what does that mean in terms of your function? If you can't feel something or you're not sure where you are in space, it's going to make movement very difficult. And what does that mean in terms of getting in another chair? What does that mean from, you know, going from room to room? What does that mean about bringing back at the basic level? We try to put those cases together. In the early, um, kind of treatment and diagnosis time. We work very closely with surgeons, with radiation oncologists, medical oncologists to understand symptoms that you're experiencing. Sometimes we can help sort groups with related tumor that might be coming from somewhere else, and we really help them in terms of how can we help you tolerate treatments or anticipate things that may happen as a result of treatment. We try to do a lot on coordinating therapy, coordinating equipment for Medication a lot of programs that you may need to really optimize function and dependence. And really, like I said, we want to make sure that we're keeping you safe. So we keep any kind of precautions, whether it's blood tests or blood pressures or fractured, bone involvement that you may have. We keep all that to account. And so I hear a lot when I find the therapy didn't help, or I would find the therapy and I got hurt. Therapy can be very powerful and very effective when it's the right therapy for the right person. But also with the right precaution for a sleep. And without us letting your therapist know, they be not. And so we, we always really want to work closely together to make sure that we're providing the right recommendation. So what happens after you meet someone like me? Sometimes we may recommend additional workups. And I was very fortunate to know Sharon Berlin, we heard a lot about last night. Um, and the third time I ever met her is something that she described to me. And the first thing I said is I think we need to work with Delmar. Um, and so that might be a recommendation that we need. Sometimes we say to you the things that we can do to help you right now. Sometimes we say, I'm here, to support you, but I'm gonna take a bit of a vaccine of what's happening in your treatment. We may make recommendations on family bumper management. You can help with sexual functioning. When we need to, as we also work very closely with urologists, with gastroenterologists, and with providers who specialize in medicine and mental health to really make sure that we're looking at it from every aspect. We can help in terms of PMF patients contain procedures that desire to require interventional nutrients. But again, we're always being mindful of what is safe for us to do and what's going to be beneficial. We talked to you about the idea of therapy, but to expand it more. We think about things like vision therapy. You know, is there something that we can do to reach three muscles of the eye that they were involved on based on cranial nerves? Thinking about hearing and vestibular therapy. You know, how does your hearing impact you in terms of your corporal balance? How can we help you with that? Speech therapy, and I think about this a lot with, you know, skull face and also with our pediatric population. What it means in terms of how can we help you afford your life forward? How can we help you with swallowing? Can we make sure that we're pretty everything you're knee from that? Sometimes we incorporate bracing for impairments that you may have, something that might help your, your foot be picked up or help stabilize your knees. When we talk about bracing, like you hear about it, you'll hear about it as it crosses the joint. So if you ever heard of an AFO, what that really means is a brace that crosses your ankles and your foot. If it's a KAFO, we can now cross your knees. So if you're hearing about PSF, that's what we're describing for you. We might help with your medical equipment, everything from if photo care is needed, a walker came, things that you may need for your home. We can help a lot in terms of, um, coordinating that for you. For some patients, they may not need therapy. We just give them five and stuff exercise. Um, what is safe to do? What are good mechanics? What type of things they could be, uh, avoiding? We do a lot of counseling and education. One of the things that I do quite a bit of, um, in interpreting. Um, so I was very fortunate that I could be here for this entire meeting. Um, hear a lot about the treatments that are happening and the differences in decision making for treatment. Not that I'm prescribing them, um, but a lot of times patient comes to me and says, So what does that mean? Can you describe that? So what is that gonna look like? And so we can, but we really try to put a big emphasis on what does that mean in terms of your function things we're seeing now? How do we anticipate that may change and how do we preparing for that? And also we can help remain some complementary medicine techniques, thinking about things like massage and acupuncture, and thinking about what they are appropriate. I surprisingly had two patients with server role Cordova this year who. Both passed out and cell support syndrome after massages. And what that means is how to deal with the jupe island, um, and you know, some changes in terms of sweating the base. Um, and both of them have actually been treated. Um, you know, for cervical cordoma has been radiated, and the area when you think of involvement, we have to think about blood pressure, um, in new blood vessels, and you know, parapyroids that are involved. Um, towards some of the iterations to things in our face and also into our float pressure and abreving the sales right over that area. Um, so it was interesting for me. It's something for me to think about, um, but something that we really want to take into account when we're making these recommendations, and why I strongly encourage you to, to speak with a societal things that you are experiencing. I'm gonna expand it. I went to an entire picture. I probably have forgotten people, but these are all these people that I started to add that may be part of your team. They may be part of your team from very early on. They may be part of your team for treatment. They may become part of your team during survivorship. So something to do think about. I encourage you, you may not have to know the right person to go to. You just need to know the right things to say. Um, and you know, making sure that you are bringing up those symptoms. I just wanted to highlight a little bit about survivorship because that is one of the big things that I know we're talking about, and the Fordova Foundation really has in their strategic plan. So we talk about survivorship, we're talking about the health and well-being of a person with cancer from the climate side. Diagnosis to the end of life. And a person is considered a cancer survivor again from a child of diagnosis through the rest of their life. And you know, it could be at any time force that you're experiencing symptoms or that they're now becoming something that you want to focus on. And don't think that just ecoherent survivors should be cancer on these symptoms if you haven't earlier. The Cordoma Foundation does have some great resources for various different symptoms. And different places that you put up for questions that you may be having. They have great things in terms of peer support. I have one patient who loves to talk to me about this for Doma Twin, who is experiencing a lot of things beforehand. So he comes to me with a question because I've heard he has heard them from. But this is also a great resource. And I just want to highlight part of the strategic plan, a part of the strategic plan. Plan really is that in focusing a lot more on survivorship care. And the idea is really how can we help? I think Mary, Francis did a great job talking about the pediatric network. One of my hopes is that we can do the same thing, connecting you with the buyership wherever it is that you need, connecting you with that expanded multidisciplinary team, and trying to identify them. We're working really hard for that. Um, I encourage you that if you're not sure to or you know you feel like you're where you are, you're not sure if they can, you know, help or how they can help. Reach out to the Proto Foundation. Um, I get 12 calls from China and from somewhere. Um, about patients in different places, the things they're experiencing. How can I help? What recommendations can I make? Who can I connect and I will be happy to do that? And I'm really truly hoping that we can do more of that. Like I said, I think it's a great foundation. I credit all of you for being here, for really being teaches us, um, and who inspires us to do what we're doing there today, and that's amazing.