Thank you for having for asking me to speak Christy. I've been Working with brain tumor patients for 20 to 30 years now first as a staff nurse on neuro and then as a clinical nurse Specialist in in neuro at the VA they handed me all the brain tumor patients years ago and then I decided boy these people need some symptom management and help and then I was able to go to UCSF and And I earned a doctorate in symptom management and quality of life of brain tumor patients So it's been a wonderful progression over the years to see how we've changed in our treatment But also how we now give support in places around the country different institutions have made such an effort To include brain tumor support as well as as treatment how many people in this audience work with brain tumor patients? Okay, so maybe I'm speaking to the choir today, but I hope to be able to show you some some new things and what I feel after have having Done this for so many years What's important to me and some new innovative? some new innovative Ways to help patients and families so oh and I have till how long 8 26 and you'll give me a warning Okay, thanks. I don't want to go over. I can get excited about this topic Okay, so when someone has had a brain tumor What I've always learned is it it's it's like lightning strikes it changes their whole life Nothing is ever the same again They they can tell they have told me so many times what happened when it happened What happened when it happened? What were the symptoms and that it changed their lives and not only the patient tells me the story? But the caregiver tells me the story As we can see we have a lot of different types of brain tumors But we can see that half of over half of the brain tumors about 60% are actually non-malignant brain tumors they are meningiomas pituitary tumors Acoustic neuromas and these patients can live a long time and these patients also have issues Even though they're quiet about it, and they often suffer some survivor guilt They need help as well as the patients who the 40% who have malignant brain to brain tumors like glioblastoma the anaplastic astrocytomas and and other types, so I think that We have to look at both of these because both of these suffer cognitive effects They both suffers a lot of the same symptoms And they both need help and I was thinking also if for this group Working with you of working with neurosurgeons basically a lot of times meningioma patients Do do not go for further help you are it you are the people who are going to be helping the meningioma? Patient and family and so having some tools may be helpful So I decided to use a framework. I think of that. I guess after that doctoral work at the school of nursing They always say you need a framework and so this was mine today, and and that is there the patient and the caregiver is Are the central part? It's we are patient centric now more than ever. It's not about the treatment It's not about that. It's about the patient and the caregiver So there's three parts of support and one is the social support the social emotional spiritual support and the everyday needs travel That's one part of support the other one is educational and informational needs What do they need to know to get through this and the other is rehabilitation needs? What can they do to optimize their functional status to function to optimize their cognitive status throughout this? this journey So I'll be talking about some assessment and needs Persistent symptoms and management of those symptoms Changes after initial treatment phase and then I'll be talking about resources for support and some educational materials So when I'm thinking of assessment factors, I think of the type and location of the brain tumor I also when I think of gliomas now, I think of markers and we'll talk about that. I think of symptoms Age age is a really important factor because it depends if they're pediatric patients if they are it it in the age where they are the they have young children or they're the The young adults or they have young children and they're trying to have their their life They're trying to push forward for their family or if they're older Functional status and social support. So as we know functional status is where we really look at the rehab piece But social support is interesting because who do they have around them? But what do they know about what what experiences have they had in the past with neuro? Trauma has someone had a brain injury in their family So they might know something about that and then they might know something about that Trauma has someone had a brain injury in their family So they might know something has somebody dealt with cancer Do they have doctors in their family that can provide them help or do they have nobody? And this is the first time anybody's been sick in their family. I think that's has been a real Awakening for me to sometimes remember that it's very different Depending on the social support and of course the financial support is a huge issue huge issue On where you can get treatment for brain tumors because it's so important that if you can get treatment at a brain tumor center Where a neurosurgeon does lots of brain tumor surgeries That's and has supportive neuro oncology and multidisciplinary teams. That's your optimal care So Greta camelmeyer was my mentor and she used to work at the va as the clinical specialist before I did in san francisco And um, she was a powerhouse to say the least And so she always told me mary if you know your neuroanatomy You can really help these patients and figure out a lot about each patient So that's the first thing I do is I I try to think about when i'm talking to a patient I I talk to them and I think now where is their brain tumor because this is going to really affect what they who Who they are and and how they're going to be functioning through life since then, you know If it's it's if it's an occipital tumor, they've lost eyesight usually on the other side That's a huge functional change. We know with frontal lobe. You have your executive your judgment factors speaking and reasoning So that can be really important And parietal lobe and temporal lobe. I don't know if I need to give a neuroanatomy lecture to this esteemed group But I will say that knowing where that brain tumor is is really important Another uh When it comes to structure, I think of low-grade tumors. These are usually patients 20 to 50 years old Can be kind of quiet in a quiet area hasn't really affected them too much Often it can be removed and people can live for quite a while But they'll have some symptoms. Most people will have some difficulty with cognitive symptoms and then um then I this this is a picture of all this this one here is a picture of The different places that a meningioma can occur So meningiomas sound like oh, it's a benign tumor. It might be okay But depending on where that meningioma Is located makes a big difference on the person's function If you have one in in the supercellar area, it it can cause tremendous vision problems The cerebellar area they they just can't walk well and so this is how I look at it is my neuroanatomy and It it makes a difference and of course, we know that sometimes people present with meningiomas in several places and that's hard And then finally we have these types of tumors the horrendous butterfly glioblastoma, you know, it's interesting right now I consult for a Pharmaceutical startup who has a treatment for brain tumor patients And so they ask me to talk to all of their patients that call in And and also I have a friend whose mother just had a Butterfly glioblastoma. I feel like i'm seeing more of these. I don't know if there's more of these I don't know if there's more multiple tumors now, but i've just seen them And as we know what happens very quickly is that personalities change and functions change within within weeks to months And so again, this is I start I start immediately thinking What is this patient going to have? Where is it going to go for these people? How are families going to have to jump in quickly because maybe some people are fine right now But they're not going to be fine for a long time And like I said the other factor the other medical factor i'm looking at a lot of times is is markers And the markers i'm looking at is idh1 mutation idh1 Wild type if people have the idh1 wild type. It's usually started as a glioblastoma. It's aggressive and it has a fast shorter survival time the idh1 mutation usually starts from a A tumor a lower grade tumor and so that gives you maybe longer survival time That's that's what they show and then do they have a 1p19q deletion? If if a patient has a 1p19q deletion, they may have a longer survivorship Survival, so these are factors that I think in my head when i'm when i'm evaluating brain tumor patients and So if anybody knows do most people know about the mutations and that kind of thing? Okay, um That I find that uh, it's it's very helpful and most people who now have brain surgery will have these will will they will do these markers and Uh, they will it I just you just know that you have about survivors survival. I think it's something to look into So, uh persistent symptoms, uh, terry armstrong is one of the leaders in uh, symptom symptom research she is a phd nurse and nurse practitioner She works at the nih and was at the md anderson and she did a collection of studies of over 500 patients and gave them the md anderson assessment tool for brain tumors And she found that there are five symptoms that a brain tumor patients have on a regular basis Uh, and they are fatigue drowsiness difficulty remembering disturbed sleep and distress and What I I like about this and actually my son helped me put this together and he he didn't realize it but this line between each one of the symptoms is so important because They're all a little bit. They're all connected That doesn't mean that one one causes the other but they're connected if somebody's having difficulty remembering they have fatigue If somebody's having drowsy has fatigue, they're probably drowsy If they're having distress They're having fatigue. So these are symptoms that patients constantly feel and I don't care What kind of brain tumor it is? It's interesting. These are the symptoms that people have and uh, we uh, i'm going to talk about three of the symptoms, uh in detail one is fatigue And the other one is difficulty remembering and i've made that into a cognitive symptoms and i'll be talking about distress So fatigue fatigue is Uh an overwhelming fatigue has been shown in many studies and uh in an oh and I want to say that the information from that that from these next few studies is from an article in Neuro-oncology by christina amade It is an extremely well referenced well evidence-based article on interventions for symptoms And it's uh 2018 and I suggest that if you want to take a look at that, that would be really good But fatigue, uh when we do studies the what the one symptom that always Comes to the top is fatigue. It's and the overwhelming tiredness that is not Relieved by a good night's sleep Uh patients have described as fatigue as hitting the wall. I can't get any farther. I can't do any more than what i'm doing Uh, they talk about tying shoes bending over and not waking up for three hours They uh, they talk about you wonder why I for a long time I I would meet these patients and they seemed so so good they'd work at the national brain tumor society with me and But when they were tired and they would volunteer for three hours they had to go home and these were these were These were people who worked in the business world who had big big Jobs, and the fatigue factor just would would knock them over. So I it's amazing how important Uh, we understand fatigue is for these patients Uh, and and what it means for them and I remember a dentist calling me once telling me I don't understand it I would work all day and then i'd play basketball at night. I can't do it anymore I just get so exhausted and it's fatigue We don't know the underlying causes of the fatigue people are looking at different causes But we are hoping that we we know it exists. We know it exists um, it's interesting because uh other cancer patients also have fatigue but Brain tumor fatigue I think is is just a little different So there's some preventative interventions and that is first to eliminate Any factors that contribute to fatigue pain comorbid diseases and sleep impairment Medication review is really important Anti-seizure medications can be one of the biggest reasons for why fatigue causes a problem And and look at for drug interactions And we'll see a consistent theme is that exercise really decreases fatigue. It seems counterintuitive But it's not and that it really really helps people with fatigue just taking a nap Doesn't always wake them up now the other uh, self-management techniques are important and What people have told me because in my postdoctoral work I did a lot of fatigue focus groups is that there are certain times of the day when they are really Tired and and there's certain times of the day where they're they feel great So they decide they take classes and do things during the time they can and then they go home And they know they have to do this. So that's energy conservation They can't be doing laundry and everything else. They have to just plan what they're going to do and it's really helpful if they have people to Support this and help and do a lot of the activities so they can do the activities that's going to help them move forward relaxation techniques and mindfulness massage and yoga Cognitive behavioral therapy you'll hear about this It's a it's a type of therapy where you work with a psychologist And you focus on a certain issue and you look at this issue in detail. What are the issue? Why is this fatigue causing me problems? What are the things? That I can do to change this fatigue and then you work on changing this behavior and it takes several sessions to do this So sometimes people don't have the patience for cognitive behavioral therapy, but there is evidence showing that it helps There is some there are some drugs Uh armadofinil who's that has been shown for short-term use for some severe fatigue With other treatments. I know that sometimes methylphenidate's been a little bit helpful again I've been talking to nurse practitioners and doctors Who do a lot of this prescribing it's been a touch it one person will respond to it and the next person won't So you just don't know And corticosteroids at the end of life So cognitive changes Cognitive changes are just so common with our brain tumor patients and it changes their whole life uh What we are what things are changing as far as treatment for brain tumor patients that may prevent some of the cognitive changes And and you know when I think of cognitive changes, I should define it as memory issues judgment issues uh Difficulty multitasking which is, if you ever ask your patients, are you having difficulty multitasking, they say yes. It's just unbelievable. They just can't do it. So what they're trying to do is prevent through radiation, because we know radiation causes more short-term memory problems and fatigue. So there's a great study out now that came out about a year and a half ago on hippocampal sparing during radiation therapy, where they choose this area to, if possible, to not give as much radiation therapy. A head climb during radiation. Mementing may delay selective area of decline. It may delay it. It doesn't take away cognitive treatment, but it delays it. And I added surgery by a skilled brain tumor neurosurgeon. Brain tumor surgery is a specialty in itself, and so if it's a person who does brain tumor surgery all the time, they have a better perspective of what can be removed and what cannot be removed. That might be a bias, but I just think we're finding that to be true. Self-management interventions. A guide for managing memory disorders. Planners. Electronic reminders are helpful. Review medications that contribute to cognitive impairment. Many of these patients develop depression, and so treat the depression and the fatigue. I also put down relaxation techniques, but patients and caregivers recognize the reality of cognitive changes. This comes up quite a bit, and what I mean by that is that sometimes they don't know it's an issue and the caregiver knows it's an issue, and they're just going on with their life and nobody's told them why they can't do what they used to do. So if you have a discussion with them about you've had some cognitive changes, it's really helpful. I was in Australia about three years ago, and I was invited to give lectures in Australia and New Zealand about symptoms and living with a brain tumor, and the one thing, when I talked about fatigue and I talked about cognitive changes, people said, thank you so much for talking about this. Thank you for bringing it out, because it is something that really affects us and people don't talk about it. So if you talk to your patients and families and say we're aware of their cognitive changes, they're thankful. I was surprised, and luckily there were nurses in the audience who came and helped these patients and families and got them help. So that's important. So there are some prescriptive interventions. Dinesipil may improve attention and verbal memory. Cognitive rehabilitation, again, with verbal and memory attention. And exercise. Exercise. I guess we just have to get out there. Thirty minutes, five days a week with a moderate intensity. If you have the opportunity to send someone to a neuropsychologist, not everybody needs it. If somebody is really ill and has severe cognitive problems, that's not it. It's the group that has the cognitive issues are those who could really benefit from neuropsychology. It's that group who is not really sure how bad they may be off, and so if you get some testing and they're having a hard time at work, this could be a real good answer for you. How many people have access to neuropsychology? Good. I found them to be always one of my favorite people on a multidisciplinary team. So distress is the third symptom. Distress is the psychosocial, emotional, and spiritual impact that people have from brain tumors. And distress can be manifested in anxiety and in depression and sometimes in mania. There are some self-management techniques. This is not to be underestimated. I think caregivers have as much distress as patients do. Yoga, spiritual resources, brain tumor support groups, which I will be talking about later, and online support. There's also to treat the depression, treat the anxiety, maybe cognitive behavioral therapy, and, again, exercise. So we're looking at some supportive needs at the diagnosis. This was a study done by Langbecker in Australia, and she asked 40 people about what were the concerns at the beginning, and the first visit was they found the concerns were worries about those close to you, not being able to do the things you used to do, lack of energy, tiredness, uncertainty, and feeling not the same person as before. The third month, they had most of these same symptoms, but they were less worried about others, and they had anxiety. Now, what the patients expressed a need for was information booklet. This is almost, to me, is like a prescription for what you can do to help people at diagnosis. Information booklet on diagnosis, a care coordinator, somebody who can come in, get them into the system, help them when they have problems, a counseling service, a peer support group, and a social worker. This is what people need, and it's like, really, and it is. I was in a patient advocacy group the other day, and many of the patients who were long-term survivors said, there's this nurse at Henry Ford in neuro-oncology, and her name is Nurse Francine, and Nurse Francine helps me with everything. Nurse Francine gets me through things. Nurse Francine answers my questions, and sometimes we have navigators now. Sometimes it's the nurse, sometimes it's the nurse practitioner, sometimes it's the PA, but who is that person who's going to help get that person through? Somebody has to be that care coordinator, and they were so thankful. I really want to meet Nurse Francine. This is another interesting part of the study, and the blue lines, this is about malignant versus non-malignant patients in the first visit and at three months. So the blue lines are for patients who have malignant tumors. The green lines are patients who have the non-malignant tumors, and they talk about brain tumor-specific needs, health system and information, physical needs, psychological needs, patient care and support needs, and sexuality needs. And you can see just the three that I find most important is like the physical needs. Patients with malignant brain tumors have more physical needs. They decrease, but they're still pretty high, where the patients with benign tumors don't have as much. Patients have the high psychological needs with the gliomas and less with the non-malignant tumors. But the sexuality needs stay the same for patients with gliomas or malignant tumors, and they decrease with the non-malignant tumors. I think this was very telling for me, how different the two groups are, because you're dealing with both of these kinds of patients. And I think this ASCO statement helps me understand now, as I've been talking about, how we have to not only look at disease-directed therapies for our brain tumor patients, whether it's benign or malignant tumors, and add palliative care. And palliative care is symptom management and quality of life. Now, when you say the word palliative care, it scares the living daylights out of people, because they think you're talking about dying, but you're not. You're talking about palliative care. You're talking about making sure they get through optimally with the highest quality of life possible. So I think we're stressing that. So the post-initial phase, what we found, I did a study with five other nurse practitioners around the country, and we found that this was for patients with high-grade glioma who'd been out at least three years. And what they told us is what happens. The themes were changed. Their life is changing. A new reality comes, and they have loss. So it was 35 patients with high-grade glioma. The data collection was from six sites around the U.S. And these were probably the main themes. Patients and families' lives disintegrated, causing instability as a result of the tumor and treatment. Life changes were profound and resulted in multiple losses. Memory loss, decreased vision, inability to work, unable to drive, not trusted to watch children. And patients and caregivers needed to adapt to a new reality in order to take back control of their lives. So these were the three components that just stood out. So the potential role and relationship challenges we found were that roles were reversed, and they were assumed by the caregiver. Survivors were not entrusted with responsibilities. The relationships changed, especially intimacy, especially in the malignant glioma patients. When asked the questions about intimacy, it was almost always, there is none. I was shocked. Loss of parenting dynamic, the patient is overruled or left out. Children take on premature caregiver roles. So now I'm going to talk about resources. Resources is probably my most favorite, because that's what I do, is I provide a lot of resources. And luckily I've worked with the American Brain Tumor Association and National Brain Tumor Society. Okay, so what can you do to help patients and families when they come in? Here are some really great brain tumor resources and other resources. How many people have heard about Cancer Care? Okay, Cancer Care is an organization. It's been around for 75 years. They help all types of cancer patients. And they provide a lot of counseling on the line, mostly social workers. A lot of counseling, but they also provide money, finances. And they will talk to patients and families. They have all kinds of resources for cancer patients, but they really do well with brain tumor patients as well. So I've used them. I've worked with them. I think that it's a resource for people who specially need finances, financial issues. The Brain Tumor Network has become one of the most exciting resources. It is a clearinghouse for clinical trials. So many people come in and say, where can I find the latest treatment? Where can I find the clinical trials? This group has come together, nurses and social workers, who will talk to the patient and family on the phone, look at their information, take into account travel, insurance, and what clinical trials they can be on. They have a clinical trial clearinghouse, meaning that every day they download on software clinicaltrials.gov trials. This has been very helpful for many patients and families. Immerman Angels is a great resource. It's for connecting patients to other patients like them. It's been going for about 20 years. Johnny Immerman started this. Again, it's for all kinds of cancer patients, but I know several long-term survivors who help other brain tumor patients through this resource. The Mucella Foundation has always been at Al Mucella. Dr. Al Mucella runs the Mucella Foundation. He knows a lot about clinical trials, new treatments, and he has people that he can connect with others. The American Brain Tumor Association is probably the foremost organization where you can find patient resources and family needs. They have booklets that you can have sent out. They have a lot of online materials. They have webinars every month. If you're not part of the American Brain Tumor Association, you should be on their site and get their information about their webinars. The patients love it. I found that the information that the doctors that talk or who do the webinars, I always learn because it's the latest cutting-edge information. So, I strongly recommend that people use the American Brain Tumor Association. So, let's talk about connecting and relating with others. This is, since through my years, I'm finding that connecting is probably one of the biggest, most important things that patients and families need to do. First of all, people connect with healthcare providers. They connect with you. They know that you are the people that are going to help them. But with connecting with the healthcare providers, that gets exhausting for the healthcare providers, and there are a lot of other resources out there that they can use. So, I have read articles about this, and I don't want healthcare providers to burn out. I'm seeing that. So, there are some social media and online support groups that come up. I'm going to show you this one. The Brain Tumor Support Group of Australia, this is one example. These are closed groups. Closed groups are very popular. Since I spoke in Australia, they were very happy to have me. Yes, you can be on my line. And there are people talking to people, people crying with people of loss, but they've been together and they share. Probably the biggest one in the U.S. is the glioblastoma closed group. If there's a new clinical trial out, it goes on there and it goes viral in seconds. Everybody shares information and they know each other. So, I'd say these people really do look into this. Caregivers look into it. Patients look into it. The second one is people look on social media for long-term survivors, where they can find hope. That's the other social media piece. I put on Cheryl Broyles, and she is a patient that lives in Oregon, and she comes down to UCSF for treatment. And I facilitate the Brain Tumor Support Group with two other nurses in San Francisco. So, Cheryl one day called me, and I know her because she's had several surgeries and she's had all this. And I don't work directly for UCSF, but I've known Cheryl because of my work in the nonprofits and stuff. And she says, do you mind if I come to your support group? And I was so honored because she's someone people look up to. And she just sat there just like the next person. And here in the support group was Cheryl with her 15 years of survivorship coming in for another surgery because she's now having radiation-related tumors. And a person across the room from her is someone whose husband is dying of a brain tumor and is going into hospice. And they both looked at each other, and it was beautiful. And so, it's people like Cheryl that keep people going. She gives hope, and they need hope. And then finally, one of my favorite support emails that I get almost every day is thecaregiver.com. This fellow, Gary Berg, has the most interesting little blogs every day about caregiving and what it's like to have to take care of somebody, the choices you have to make as a caregiver. I think that it's really good. So, that's the social media and the online support groups. face-to-face brain tumor support groups. Now a few years ago we heard that brain tumor support groups may go out of style because nobody wants to go anymore and you have this online ability to get all the information you need. Well, that didn't happen. In fact, I think it's the opposite now. The American Brain Tumor Association has a list of brain tumor support groups around the country. And I know a lot of the people who run brain tumor support groups around the country, people in Edison, New Jersey, in Chicago, people who run them in Palo Alto in California. And the one thing is our support groups have 44 people in them now and you separate them now sometimes to have caregivers and brain tumor and patients because it's so big. The UCLA support group is just caregiver alone because they realize those people need so much help. It's so sad being a caregiver where the patient says, I can only do what I'm doing and they're kind of laughing while the caregiver's thinking where are we going to get our next financial input. So the brain tumor support groups have become a very positive thing. The American Brain Tumor Association has three really good webinars on how to start a brain tumor support group, issues in a brain tumor support group, and different kinds of brain tumor support groups. There is a caregiver brain tumor support group at UCSF and this group is a closed group, meaning that it's not a drop-in. They talk about certain issues and you have to be invited to that group. Most of the groups are drop-in groups where someone will say, listen, you want to talk to somebody, you want to go to a support group, you go to and it's the first Wednesday of every month and it's open. Most of the discussions in brain tumor support groups are about symptoms, fatigue, cognitive changes, about going back to work, nutrition. Nutrition and diet is good. People starting on Timidar, what is it going to be like? What is it going to be like to have a mask on for radiation? And you'd think people are going to get tired of talking about these things, but they never do. Everybody tells their story. They go around and they get a brief moment to tell their story. This is what happened. This is the kind of tumor I have and this is how long I've been living. And what I've noticed over the years, it does ebb and flow, there can be a lot of people and not a lot of people, but there's so much respect for each person in the room that whether you're young in your 30s, 20s or 30s, or whether you're in your 50s or 60s, it doesn't matter, they're in there together. And we have the group, it just starts at a certain time with a little bit of food, and then 6 to 6.30, 6.30 to 8 is the group, and then at 8 o'clock we stop as the facilitators and many times they're there another half an hour later talking to each other. Again, it's the community, it's connection that keeps these people going and it makes such a difference. I just have one other little story. One time we were facilitating a group and it was in a hall at UCSF and the UCSF group is open to anybody in San Francisco and we have Kaiser patients, we have UCSF patients, we have Sutter patients, and this guy's walking down the hall and he looks in at the group and he says, is this the brain tumor support group? And we're all in there and we're laughing and he says, yeah, yeah, I mean if you want to join our club, you sure can, this may not be the club you want to join, but he had a brain tumor and he was really sick, but we didn't know, he had a great time and he died within a month, but he had a wonderful meeting and so he just kind of had this period of time that he could enjoy and he connected with those other patients and they connected with him. So it's so powerful. So also one-on-one meetings with local patients and caregivers, many times like at Northwestern they have a support group, but they also have a group of patients and caregivers in their own community that they can talk to now. That's become important. So you can say, I can talk to this lady and you can talk to them and set it up. So it can be right within your own institution. Patient and family conferences are also really big. They have them at UCLA, MD Anderson, the American Brain Tumor Conference Association is doing regional patient conferences, they're usually educational, and then they also have a lot of networking time. Usually they throw in a little massage or some relaxation and the patients and the families really are able to lose that anxiety and move forward. So I'm going to talk a little bit about some other exciting things. One program that's really exciting is the Dedicated Caregiver Program at UCSF and I think there's models around the country now that we'll see. This is where one of the caregivers of a patient who died said, listen, I had such a rough time and you didn't give me help. You were helping my loved one with treatment, but you didn't help me and I was having such a hard time. So she was a benefactor and she said, I will provide some funds if you put together this program. So they researched carefully how to put together a program. And they have a nurse, they have an administrative assistant who's very good with patients, and they have a social worker. They've put these people together and they have this incredible caregiver program. And what they do is they see every family who comes in with a glioblastoma, they connect with that person from the time they start, they provide a packet of material, and then many of the patients are not from that actual town. They live in central California and all over. So they still keep communication with them about two or three times. And when they come into clinic, they connect. And then if they need more information down the line, they find out. But this is a very, very powerful program and people are really, really happy with it because they don't get lost. And then the caregivers are the ones who have to make all of the decisions. So the social worker has the caregiver support group and will contact them if needed. Not everybody needs help, but everybody needs at least a good assessment. So the caregiver program has become really popular. They have some good online publications at UCSF, and one is Orientation to Caregiving. I think you find that very interesting. The other one is probably a one-of-a-kind that nobody really has, and that's Transitions in Care for Brain Tumor Patients, Palliative and Hospice Care. So if you're looking to round out your educational materials for palliative care, you could consider this material. I think it's a really good one, and patients and family love it. They did a lot of research to put that together. So then finally, another innovative way to provide care and connections for brain tumor patients is what we have is the Milton Marks Camp. Again, all this seems to be coming up within the last eight years. The Milton Marks Family Camp is a camp that was started by Abby Marks. Her husband, Milton Marks, Jr., was diagnosed with a glioblastoma, and they have three children, and they were in their 40s, and she said, what am I doing? I don't know how to take care of these kids. My husband's not together anymore. He was a really high-functioning individual in San Francisco, and she says, I need to do something. So what she did, after Milton died, she said, what difference can we make? And so she said, let's develop a camp for families where one of the parents has a brain tumor and have the kids and the parents all go to the camp, and they can relax and be taken care of for a weekend, and they can get some help they need, maybe some psychological help, and they can play and laugh. So it's been five years now, and what we've developed is it's a combination between a partnership between UCSF, neuro-oncology team, the families, and the diverse team of volunteers. This is not funded by UCSF. I mean, they give part of the funds. It's separate from UCSF, but we do work in conjunction with UCSF, and we have, like, 40 volunteers. This is some examples of the Milton Marks camp, and we were talking a little earlier about how kids have to take on the roles of taking care of their parents, and this is when you come into camp, you see the families come in. There's the caregiver hunched over the patient, making sure everything's okay, and the kids are watching, and we'll say, we'll take care of your loved one. There's nurses, volunteers, and the counselors take those kids and let them be kids for a weekend. They don't have to worry about dad. They don't have to go, and I remember one of the caregivers said to me, we were at a campfire, and her husband was not doing well, but we could handle him. A lot of us have, there are nurses there, and she said, you better take care of my husband, and she was able to go off, and then after a while, she had such a tight hold of being that caregiver, she realized, we will take care of your husband, so we give everybody a breather, and we sing, and we eat good food, and we're all there together, and I think we've all grown as camp counselors and volunteers as much as the patients, so that you have activities. There's a pond, and my son volunteers there, and he goes, mom, that pond is magical. Here's some of the kids going to the pond. There's team building exercises, and the women patients get to know the women patients. Men patients get to know them, and they lifted up some of the doctors together, and it's powerful. Many of these patients have died, and we've been to the funerals together. I didn't expect this. About 15 families get to go. That's about what it takes. You can't have many more than that, but it's a beautiful experience, so there are many innovative ways to provide connection for brain tumor patients. So I just want to finish up today by doing a summary of supporting brain tumor patients. So to identify a dedicated multidisciplinary team is really important. Having doctors, nurses, advanced practice people, social workers, and if you're lucky enough to have the neuropsychologist as part of your team, as part of the rehab team, is really important. To focus on the symptom management and social needs. What do they really need? What information? What counseling? To identify specific patient needs and to identify caregiver needs and work on those and be aware that they both need help. To provide options where they connect with others to form community. The other place that has a lot of patient support groups is the cancer care support centers. They do very well with that. And then one thing I didn't get into, but to provide survivorship clinics. There are a few survivorship clinics around the country, and that was where usually a nurse practitioner or a PA runs it, and they come in and they talk with the patients and they check physicals, but also work issues, relationships, symptoms, finances, and the clinic runs about once every other week for a half a day, and this has been very helpful for people to just work it out. So that's what I have as a summary today. This is what I have to tell you about supporting brain tumor patients and families. If you have any other thoughts, I just want to thank you for having, listening to me about my passion. Thanks. Thank you. Are there any questions for Mary? Any questions or comments? I do. Oh, I'm sorry. Go ahead. all of these support areas can work, but is there something that you direct for really less vulnerable patients, especially like new onset diagnoses that you know as a practitioner that this patient is not gonna do well? And if you have a family in the room, I see patients in the emergency room with families, they have no idea, and sometimes maybe the ER physician shouldn't well. How do you handle that with the glioblastoma? I think I just talked to somebody yesterday on the phone like that, too. They have a disease, and they're going to have to, what goes in my head, they're going to be going through a journey. They are going to, but we don't know what the journey is. I've been working in research, and I'm telling you, there are people who are surviving. There is a group of people who are now, there's this tail, I love to say, when I look at the average of people surviving, and I don't know if they're going to be that person or not. So I am not completely without hope, and I think you're going to have some functional changes. This is what goes into my head, and it's going to be a journey, and I don't know what your journey is going to be. I do know if you're over 65, it's probably not going to be a longer journey. If you're younger, you might have an opportunity to live longer, but I don't know, and this is what we're going to deal with today. This is what we're going to deal with. You're going to need to see a neuro-oncologist, you're going to need a neurosurgeon, and we'll work with it. Yeah, it's a brain tumor, and we'll deal with it. And I just think of it, it has to be day-to-day, and it's hard. It's hard, but I know that they're people. That's the other thing, is that they're people, and they need to just have it treated like that. If you're a person, yeah, you've got something, this is what you know today, yeah, it's a brain tumor, it's hard, let's see what we're going to do, and there are treatment options for you. Hope. They're looking, they need some hope. And that's not being unrealistic, it just is, there are treatment options. I have one comment. I was in neuro-oncology for 11 years, and the internet is a double-edged sword for your patients. So I tell my patients, be very careful with what you read, because there are a lot of very disgruntled and unhappy people out there that will tell you horror stories. And so if you really want to know something, go to reputable sources. A lot of these chat rooms and everything have people that scare our patients as well. So I tell them, be very, very careful with what you read, and if you read something that is distressing, come back and talk to us, and let us know, because we can hopefully alleviate some of your fears or the caregiver's fears. So just caution your patients when they're diagnosed with brain tumors, too, to try to avoid the internet initially, because that really can send them over the edge. It's usually the caregivers who start looking at the internet, it's usually the caregivers. One thing I didn't say about distress, distress is kind of interesting, distress is the anxiety and dealing with this new illness of cognitive changes plus usually having a diagnosis of cancer, and it's much worse at the beginning. And then what happens is that people do usually, when they learn the new normal, their distress really does decrease over time, but they really need to be intervened at the beginning if they have high anxiety and high stress. Well, thank you so much, Dr. Levy. Thank you. Okay.

nurse Mary Lovely

brain tumor patients

neurology

symptom management

quality of life support

patient-centric approach

cognitive changes

support groups

resources