Brain Cancer Podcast: Recent Episodes
Brain Cancer Podcast
My name is Chris. I am a 5 year+ glioblastoma survivor. This podcast is for anyone impacted by a brain cancer diagnosis. The amount of new terminology you‘ll hear is overwhelming. My goal is to break down and explain some of that terminology into easy episodes you can listen to on the go. I also share patient and caregiver experiences, do interviews and give regular updates on my personal treatments. Everyone is welcome here. You‘re not alone in your fight against brain cancer.
Hello! I wanted to create this episode for Glioblastoma Awareness Day 2023 to add to the various articles and stories you hear from GBM patients. Whether as a patient or a caregiver, this disease is horrible. We've lost some true greats to this disease. And I don't necessarily mean "famous" people although we have lost them as well. Parents, siblings, family members, best friends...
I know that better treatments are out there and researchers are hard at work looking for answers.
I just want to say thank you to everyone for all of the support I've gotten. Truly the best people in the world.
Here are some of the links I had mentioned as well!
The durvalumab trial I was on (Cohort A): https://classic.clinicaltrials.gov/ct2/show/NCT02336165
ABTA links: https://www.abta.org/national-conference/ https://give.abta.org/event/webinar-what-to-know-when-youre-newly-diagnosed-with-glioblastoma/e456254 https://www.abta.org/brochures/
Hello! Sorry for the gap in episodes but it's been a hectic few weeks with work, spring garden prep and planting, taking my photo walks, and general hospital visits and treatments that have kept me behind on so much.
But, this is one I was really excited to record and I've already set aside time to record our next episode which is very relevant to this month.
It only took a few years but I'm finally more comfortable in post editing with getting my volume set to the standard of LUFS and hopefully the earlier episodes didn't have you changing the volume a lot! LOL, I get there eventually.
I hope you enjoy this one and that it can be helpful to you as a patient or caregiver!
Chris
Well hello and thank you for listening today! It's been two years since my second craniotomy for a small recurrence of my brain tumor. I cannot believe that it's been two years already!
I just wanted to share how I felt back then and how I'm feeling today while still going through my own treatments. I have to apologize for not getting everything I wanted to get done for Brain Tumor Awareness Month. Like I mention in the episode, I just don't have enough hours in the day after work and getting everything cleaned up and planted outside. I also have to manage with the fatigue as well.
Hello! This is just a short episode talking about Brain Tumor Awareness Month here in May 2023. I just started talking and just went with what I was feeling. Not exactly a structured episode but sometimes I like to just talk. And thank you for letting me talk. This is a show for all of us and it really acts as a bit of therapy for myself as well. Some days ARE difficult. But I am so lucky that I've got an outlet like this.
I got some not-so-great news recently as we've lost another good soul far too soon. It's this awful situation where we meet under such unfortunate terms but I don't take any days or anything for granted. I know one day we will be able to beat this disease.
Thank you all so much. Please never hesitate to reach out to me if you need anything.
Chris
Hello! I am so sorry for the delay between episodes! I also did not realize I already did an episode about MRIs but I'm not going to waste a recording I made. Maybe it can help someone and that's all I want.
It's been a very hectic few months and I'll be doing an update. Don't worry, I am still going and our journey continues! I was also at work a bit more, spring cleanup outside, starting seeds for the garden, and we just had the Boston Marathon and had a great time as a spectator! Even with some rain near the end, I am always excited for seeing these athletes run.
I've got a few great ideas for episodes and we're going to have a great summer!
Chris
Links:
https://radiology.ucsf.edu/patient-care/prepare/mri#-
https://radiologykey.com/imaging-of-brain-tumors-mr-spectroscopy-and-metabolic-imaging/
https://moffitt.org/cancers/brain-tumor/diagnosis/mri/
https://www.cedars-sinai.org/programs/imaging-center/med-pros/neuroradiology/mr-spectroscopy.html
https://4rai.com/blog/3-types-of-mri-machines
https://www.nibib.nih.gov/science-education/science-topics/magnetic-resonance-imaging-mri
Hello! I'm sorry for the delay and I'm getting caught up on things. Normally, I should have more time but I've been busy with so many things and I wanted to record. This is just a short personal update and I also felt like I wanted to talk about some of the things we as brain cancer patients and caregivers hear both online and in real life. I want to thank you all so much for supporting me over these years and being so kind to me. I always have so many potential topics going through my head but please let me know if there's something you want to hear about. This is our show! Chris
Hello and welcome! In this episode, we go over the latest step in my current treatment and discuss what lomustine is, potential side effects, and a story of how much control some companies have over our treatments. I'm sorry for the slight delay in releasing this episode. I've been working, going to appointments, and my voice has been pretty rough the past week or so. That makes recording just not something I could have done. I also normalized the audio to the industry standard because I'm still learning things here! I hope it sounds ok and that the volume is balanced from start to finish with nothing being too loud or quiet. Please let me know if there are any issues. Thank you all so much for your support and being the greatest group of people. I practice gratitude every day and it helps me so much. Links from the show:https://chemocare.com/chemotherapy/drug-info/Lomustine.aspxhttps://www.sciencedirect.com/topics/pharmacology-toxicology-and-pharmaceutical-science/alkylating-agenthttps://www.drugs.com/drug-class/alkylating-agents.htmlhttps://cancerletter.com/trials-and-tribulations/20210716_7/https://www.cbsnews.com/news/brain-cancer-drug-gleostine-no-longer-an-option-under-medicare/https://journals.lww.com/neurotodayonline/fulltext/2021/09160/a_glioblastoma_drug_is_abruptly_withdrawn_from.6.aspx
Hello and happy holidays!! As we head into 2023, I wanted to do a little recap of 2022 and talk about some plans for the next year. I'm really excited to see what we have in store next year. Thank you all so much for all of your support during these 6 years! I am so thankful to have you all in my life. Make sure you give the show a follow on your podcast app of choice and if you enjoy the show, write a review so that others can find it!Chris
Hello! I figured that a new year would be a good time to update our trailer since I made the original one quite some time ago. It's just a 1 minute trailer and I tried to fit what the show is and the purpose all within a minute. I wanted to keep it in that general range so that more people can hear a quick trailer and tune in. Be sure to share it and thank you all! 2023 is almost here and we've got a lot more to talk about!Chris
Hello! This is the 3rd year of our Thanksgiving episode series. I have a feeling we will have a few more years of these :)
I also give a quick update as to how I'm feeling after radiation. This is being uploaded a couple days after Thanksgiving but it was a hectic few days. I'll be sure to do at least some posts on the Facebook page at Facebook.com/Braincancerpodcast
Feel free to leave a review/comment if you'd like!
I just have so much in my life to be thankful for and I hope you enjoy!
Chris
Hello! Thank you for stopping by for a quick update on how this short, ten day radiation therapy has been going. It is highly targeted and I always want to share how I am doing as well. I will definitely be doing an update after day 10 and throughout the coming months I'll let you all know how I'm doing.
I'm still working on mic placement and how far away to talk with this mic but once I get that and the post production settled, the quality should hopefully improve.
Thank you all so much for your support and never hesitate to reach out!
Chris
Hello!
Lots going on and I wanted to give you all an update on how I have been. It's been a very hectic few weeks and I wanted to give you all a bit of a recap on things. I've actually already recorded another short update after finishing this one so stay tuned for the next one!
Thank you all so much! I decided to get one more upgrade for our show and I'm working on how to get it sounding how I want it to both during recording and in post. I love doing this and over the past couple of years I've saved up for some small upgrades to improve our show. I think getting a mic booster however many months ago was quite an improvement!
I'm excited for what is next on our journey!
Chris
Hello! I have officially hit 6 years since I was diagnosed with glioblastoma in September of 2016. It's a bit of a time of reflection for me. How far I have come and the people I have encountered along the way.
I just wanted to say thank you. I cannot put into words how much you have changed my life. I could not ask for better people!
Chris
Hello! I just wanted to sit down and have a chat about dexamethasone. This is one of the episodes I had been wanting to make for a while. Many of us will experience this drug at some point. It's important to understand its side effects and how it can work against the very idea of immunotherapy.
Many of us in the community have felt those side effects and it's important to be informed.
I've included some links below as well for your own research.
Thank you all for your support. I appreciate all of you so much!
Chris
Links:
Immunotherapy episode https://www.podbean.com/media/share/pb-d9d8j-111c5bb
https://www.drugs.com/dexamethasone.html
https://www.drugs.com/drug-class/glucocorticoids.html
https://www.ulh.nhs.uk/services/cancer-services/cancer-services-information/taking-dexamethasone-when-you-have-a-brain-tumour/
https://pubmed.ncbi.nlm.nih.gov/31346902/
https://www.cancer.gov/news-events/cancer-currents-blog/2020/brain-cancer-immunotherapy-steroids-limit-effectiveness
Hello! This is our episode where we look back on just a few of the many brain cancer studies and articles over the month of July, 2022. I really enjoy doing these and it's a good way to see how many new therapies are being pursued around the world!
Thank you all so much for listening and please follow the page and Facebook at Facebook.com/braincancerpodcast
Also, make sure you subscribe!
You are all amazing!
Chris
As usual, links are provided down below and I will link the times if you wanted to note a specific part of the episode.
Links: Detecting Brain Cancer 2:30 https://hms.harvard.edu/news/detecting-brain-cancer
Brain Cancer Therapy in Pediatric Trial 8:35 https://www.genengnews.com/topics/cancer/brain-cancer-therapy-shows-promise-in-pediatric-clinical-trial/
A New Path 13:20 https://news.yale.edu/2022/07/28/new-path-treating-brain-cancer-yale-developed-compound
Knoxville boy and Batman 18:25
https://www.wate.com/news/smile-check/we-came-home-and-contacted-batman-says-mother-of-knoxville-boy-fighting-brain-cancer/
Hello! Across the United States, July 20th is recognized as national glioblastoma awareness day and I wanted to release a short episode talking about some of my feelings and how much all of YOU mean to me.
But honestly, all brain tumors are dangerous. GBM is certainly not the only very aggressive tumor type.
While it's not the longest episode, I wanted it to be a short listen and show how thankful I am. For so many things. I've made some great friends and met the most amazing people as a result of our diagnoses.
Hello! Thank you for tuning in to our monthly news recap! I read some very interesting articles this month with a focus on both DIPG and GBM as they are both diffuse, difficult-to-treat tumors.
I didn't realize that this episode went longer than usual and I considered cutting an article out but I've included time stamps down below with a link to each article. I'll also add a longer transition time between segments! I'll do better on that next time!
Up next: GBM Awareness Day 2022!
Thank you all so much and I love all of you and the support you've given me!
Chris
Links and time stamps:
1:04 https://www.channel3000.com/i/harnessing-a-virus-to-fight-a-killer-brain-tumor-in-kids/
7:40 https://newsroom.uvahealth.com/2022/06/28/discovery-points-to-better-treatments-for-brain-tumors/
12:39 https://medicalxpress.com/news/2022-06-light-activated-photoimmunotherapy-brain-cancer-treatment.html
18:07 https://www.targetedonc.com/view/fda-grants-rpdd-to-paxalisib-for-rare-pediatric-brain-cancer
23:12 https://www.msn.com/en-gb/news/other/woman-who-lost-her-sight-through-brain-cancer-prepares-for-sunderland-triathlon/ar-AAYUh3e?fromMaestro=true𝔭=1
Hello! Thank you all for tuning in! I'm sorry this episode took me a little longer to edit because it was a very hectic few weeks!
I just wanted to talk about some of the things you may have to complete before a craniotomy as well as what it is like when you wake up and how the following few weeks are after you get home! I've got a couple links at the bottom here as well. You should get a sheet of paper that will break down what you can and cannot do after going home. In addition, you'll be given instructions to follow regarding your medications. I just hung mine on the refrigerator so it wouldn't get lost. These are just my experiences and general guidelines as your team will give you instructions for your specific situation.
Once again, sorry for the delay and I've already got the topic for our next episode!
You're all amazing!
Chris
Links https://www.healthpages.org/surgical-care/craniotomy/ https://hartfordhospital.org/services/neuroscience-institute/patient-support/discharge-instructions/after-brain-surgery
Hello!!! Thank you all so much for tuning in! It's that time where we look back at a few of the new studies and stories of the past month. I've got some good ideas for some upcoming episodes as well. Please feel free to reach out for any reason and make suggestions or provide feedback. I really enjoy doing these and you all are the reason I love doing this.
I love you all.
Chris
Links! https://medicalxpress.com/news/2022-05-chemoid-trial-survival-glioma-patients.html https://bobrtimes.com/a-brain-tumor-cell-magnet/146482/ https://www.today.com/health/health/100-brain-tumors-led-investigation-nj-high-school-mayor-shares-results-rcna30902 https://nypost.com/2022/05/18/ex-phillies-brain-cancer-deaths-need-study-dr-marc-siegel/ https://www.foxnews.com/media/cancer-deaths-former-phillies-players-investigated-siegel https://www.todayonline.com/singapore/man-remarries-wife-brain-tumour-cause-behaviour-change-family-break-1901116
Hello! I just wanted to say thank you. I just needed to sit down and talk to you all after being 1 year out from my second resection surgery and some of the conflicts that are going through my head. I know I am not alone in this feeling and I hope that it can help.
You are all amazing. All around the world!
Chris
Hello! Thank you so much for tuning in and sharing your time with me! In this episode, we cover some of the latest news and research in the world of brain cancer. I really enjoy doing these monthly updates because the research and studies are constantly evolving.
As usual, links are posted below for you to reference if you would like.
I appreciate all of you so much! I truly have met some special people in very special places doing this and I am so thankful!
Chris
Links:
https://www.silive.com/news/2022/04/rare-brain-tumor-found-in-115-people-who-attended-or-worked-at-a-new-jersey-high-school-report.html
https://www.nbcnewyork.com/news/local/nj-parents-demand-swifter-action-in-school-cancer-probe-after-100-brain-tumors-diagnosed/3672694/
https://www.ucsf.edu/news/2022/04/422681/genomic-sequencing-changing-diagnosis-treatment-patients-brain-cancer
https://www.newscientist.com/article/2316878-crispr-nanocapsule-limits-growth-of-aggressive-brain-tumours-in-mice/
https://www.healio.com/news/hematology-oncology/20220420/cart-robustly-effective-in-younger-patients-with-deadly-form-of-brain-cancer
Hello! Thank you all so much for listening! I wanted to make a general episode discussing what an MRI is used for and how my typical scan works. I didn't want to turn it into a technical episode because for us, the images are the important part. My voice wasn't cooperating as much because I didn't drink enough water prior to recording and I hope it's not too bad.
As usual, links are here if you wanted to do any extra reading or research!
If you have any episodes you want to hear, please send me an email at braincancerpodcast@gmail.com and make sure you subscribe to the show and visit the Facebook page at Facebook.com/braincancerpodcast for daily updates!
I love doing this and your support means the world to me!
Chris
Links: https://www.mayoclinic.org/tests-procedures/mri/about/pac-20384768 https://www.envrad.com/what-is-an-mri-with-contrast/ https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/brain-perfusion-scan https://4rai.com/blog/3-types-of-mri-machines https://www.ggreene.com/2018/04/02/new-open-mri-at-mgh-in-chelsea-ma/ https://www.clinicalimagingsystems.com/product/hitachi-oasis-1-2t-mri-scanner/
Hello! Thank you all so much for tuning in! I had some great feedback on the monthly news updates and I hope I can do about 1 per month to just recap the newest meds and treatments that keep expanding our options. I also just wanted to talk at the end about how I personally have been doing. You all are amazing and I can't say how much I appreciate everything you've done for me. I've met the most truly beautiful people in my journey.
I've got a couple ideas for some upcoming episodes and I welcome all suggestions and feedback!
Thank you all!
Chris
Links: https://www.curetoday.com/view/clinical-trial-investigating-a-combo-therapy-in-brain-cancer-now-enrolling-patients https://www.libtayo.com/ https://www.clinicaltrials.gov/ct2/show/NCT03945253 https://www.uc.edu/news/articles/2022/03/uc-joins-glioblastoma-clinical-trial.html New Jersey clinical trial: https://markets.businessinsider.com/news/stocks/john-theurer-cancer-center-treats-first-patient-in-u-s-with-investigational-new-treatment-for-brain-cancer-1031313076 Cell phone studies: https://www.msn.com/en-us/health/medical/new-study-cell-phones-don-e2-80-99t-increase-risk-of-brain-cancer/ar-AAVJdse https://publichealth.berkeley.edu/news-media/research-highlights/meta-analysis-shows-increased-risk-of-tumors-for-cell-phone-users/
Hello! First off, thank you so much for tuning in! I wanted to do a short recap/update on the CNS tumor changes introduced in the back half of last year. I tried my best but it is still hard and my voice didn't want to cooperate either. I'll be doing another update/chat type episode soon as I have a few things beyond my personal update that I want to talk about.
It's hard to put into words how much you all mean to me. I love doing this and you've all been so amazing to me. Never hesitate to reach out and you aren't alone in this world! The sun shines through all the clouds.
Chris
Links: https://radiopaedia.org/articles/who-classification-of-cns-tumours-1 https://academic.oup.com/neuro-oncology/article/23/8/1231/6311214
Hello! Thank you for tuning in! In this episode, I wanted to just review and talk about some of the more recent news I've seen in the brain cancer world. We are seeing many advances in treatment now that people will have more options than ever before. This means longer, happier lives in our mission to eliminate brain cancer. I hope to do this monthly as long as the news keeps coming out! Thank you all so much. I love all of you!
Chris Links for articles from the show: Selinexor study https://www.cancer.columbia.edu/news/promising-treatment-deadly-brain-cancer
Electric field device https://www.qvbio.co.uk/
Radiation seed https://www.freethink.com/health/cancer-therapy
EGFR study https://medicine.yale.edu/news-article/decision-switch-discovered-in-mutations-linked-to-common-brain-tumor/
SurVax
https://njbmagazine.com/njb-news-now/overlook-medical-center-enrolling-patients-for-new-brain-tumor-vaccine/
Chemo resistance https://vtx.vt.edu/articles/2022/01/scientists-at-fralin-biomedical-research-institute-develop-new-s.html
Hello! Thank you all so much for taking the time to listen to me! I did have a difficult time with making that episode and I think I can hear it in my voice. However, I tried my best and wanted to cover what I think we all know is an important topic. Cancer or not.
I appreciate you all so much for your support and questions. Never hesitate to reach out!
I love you all,
Chris
Additional resources: https://trustandwill.com/learn/end-of-life-planning-checklist https://www.medicareinteractive.org/get-answers/planning-for-medicare-and-securing-quality-care/preparing-for-future-health-care-needs/health-care-proxies https://legaltemplates.net/form/dnr-form/ https://legaltemplates.net/form/living-will/
Hello! Thank you all for tuning in! I really wanted to do another episode talking about the importance of mental health care combined with a brain cancer diagnosis. These past two years have been a challenge for all of us. This episode might sound a little bit all over, but I was just talking about how I felt and what has helped me in my own life.
It is easy to get trapped in our own thoughts and we all have different experiences, resources are available for us.
If there are any specific topics you would like to hear about, let me know!! Or, you can come on and share your own personal experiences as a patient or caregiver to the community! Never hesitate to reach out if you need anything or you want to talk. I'm just an email or message away!
I love you all!
Chris
Hello! I hope you all enjoy this short episode talking about a couple diets that could possibly hold promise to supplementing your standard brain cancer treatment. As I mention in the episode, always talk to your doctor about dietary changes and it can be beneficial to also speak with the nutritionist. I've included some links below so you can get a start on getting extra information about these diets. In the end, a balanced diet is very important and it's something that will help your physical and mental health!
Thank you all so much for listening and for all your support! I'm so excited to keep recording and doing this for a long time! Please don't hesitate to reach out! I love you all!
Chris
https://www.thebraintumourcharity.org/living-with-a-brain-tumour/health-fitness/diet/ https://www.medicalnewstoday.com/articles/253659#Ketogenic-Diet
Some peer-reviewed articles here
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5834833/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5704454/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6361831/
This one is about glioblastomas being dependent on cholesterol. https://pubmed.ncbi.nlm.nih.gov/30765502/
https://pubmed.ncbi.nlm.nih.gov/27846382/
https://blog.braintumor.org/glioblastomas-are-addicted-to-cholesterol-can-breaking-their-dependency-stop-these-tumors/
Hello! I wanted to get this episode out before I leave town for a few days for the whole holiday season. I wanted to make an episode about some of the most common types of surgery that happen in the world of brain tumors. If any of you would like a more thorough episode dedicated to newer surgical procedures like robot-assisted surgery, micro surgery, and/or laser surgery, let me know! In addition, tell me what YOU want to hear. I am here for you all. I'm sorry if some of the audio is not as great, I wasn't able to do be usual pre-recording things like having some warm tea and drinking plenty of water before. I also plan to test out some new EQ and compression settings to try and improve my recording as well. I'm really trying to improve as I go and I've learned how to improve in other areas. I could invest in a preamp with a way to control the recording levels but I already record to an external recorder. That's an option but it might be a little bit!
I appreciate everything you all have done for me. You all have had such a positive effect on my life. I am excited to go into 2022 and trying my best to be informative and keep sharing my own personal experiences. While it certainly isn't always easy, I stop to think just how fortunate I have been.
I hope you enjoy and please let me know what you would like. Feedback is great! I love you all!
Chris
Links:
https://www.abta.org/brochures/
https://www.youtube.com/watch?v=a3kXCC3h1dw
https://www.youtube.com/watch?v=EVG6X6KNV2E
Happy Thanksgiving. I think it's important that we all take a minute to think about the things we are thankful for. I am thankful for you. Without you, we wouldn't have a show! Every one of you is special and you should feel loved, because you are.
You are the reason why we will keep this thing going! It does not matter if your country doesn't celebrate Thanksgiving. We don't need a holiday to recognize what we are thankful for.
I love you all
Chris
Hello, everyone! I hope you all had a wonderful Halloween as we head into November! This is an episode I had recorded a while ago and finally finished! I hope the audio sounds ok. I've since improved my recording area with some additional acoustic foam panels.
I tried to give a quick breakdown on various types of immunotherapy. I should be recording again either tomorrow night or Tuesday. I want to give my personal experience as I close in on the end of my Temodar cycles.
Thank you all so, so much! I've definitely gotten behind and I apologize. Here are some of the links I mentioned in the episode.
https://www.headandneckcancer.org.au/treatment/emerging-therapies/immunotherapy
https://www.cancerresearch.org/immunotherapy/cancer-types/brain-cancer
https://www.cancer.gov/about-cancer/treatment/types/immunotherapy/checkpoint-inhibitors
https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/immunotherapy/types/checkpoint-inhibitors
https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/immunotherapy/car-t-cell1.html
http://www.ucihealth.org/medical-services/brain-tumor-program/brain-tumor-treatments/immunotherapy-brain-tumor-vaccine
https://www.cancer.gov/about-cancer/treatment/types/immunotherapy/monoclonal-antibodies
https://www.cancerresearch.org/immunotherapy/cancer-types/brain-cancer
Hello! It's been exactly 5 years since my surgery and diagnosis of a glioblastoma. So, I sat down the other night and just wanted to talk. In these 5 years, I've become a better person. Someone that I knew I could be but it took a life changing diagnosis to bring it out.
I know who I am. While I still can, I want to help as many people as I can and just be happy.
I'm so thankful for having a great team taking care of me, living in a place where I can get the treatment I need, and above that, YOU. My family and friends have been so helpful and like I say in this episode, I've met so many wonderful people over these years that I may otherwise never have met. While it may not have been under the ideal circumstances of meeting, I wouldn't change it. All the people who I've met through the Discord/Reddit community, Omerta, ABTA, SG1 peeps, people who reach out to ask me questions or share their own experiences. I know I'm missing some but know that you are amazing and I'm the lucky one to have met you.
Anyone can feel free to reach out to me. I had a rough few months but you all get me through things.
Also, since I changed my recording environment a bit, I had to make some audio tweaks and let me know how it sounds. I had to lower a couple things and I'm still not set on the best EQ settings. I'll be tinkering around a bit more though. I just really wanted to release this on a very big milestone on this brain cancer rollercoaster!
I love you all!
Chris
Hello! First, I'm so sorry for the absence. It's been a hectic few months to say the least. I get into it this episode but I'm back on track and have a list written up of topics to cover.
Also, if you want to tell your story, just email me and we can coordinate something over Discord, Zoom, or whatever works. I handle all of the audio recording on my end so you don't have to do any of that. This also applies to caregivers as your experience is just as important!
I'm very excited to get back on track and putting out regular episodes. Thank you all so much for your support. It really does mean the world to me.
I love you all!
Chris
I meant to get this out faster but had a couple things keeping me always a day behind. The next episode is already halfway through the editing process. I'm actually going to be switching over to Audacity 3.0.2 but I had started editing on the older version. So, I don't think there are many major changes but I will do some shorter episodes as well after the next one!
You all are amazing and I cannot thank you enough. It has just been a rough and busy few weeks and my brain feels like it can't stop to focus on one thing at a time.
I'm excited for some nice weather, recording some episodes, and enjoying working on the garden and my photography.
I love you all!
Chris
Hello, everyone!
I just wanted to turn my recorder on and talk into my mic for a little bit. It's just me talking about a few things going on in my life. I needed to talk and you all are awesome! I know I can count on you. Yes you, reading this!
The next episode has been recorded and I need to get started on editing it. I'm going to try to get it done as quickly as possible. I tend to want things to sound as best as they can for you all.
Thank you all for everything you do for me!
Chris
Hello! I hope you are all doing well!
I explain why I wasn't recording for a few weeks and I am so sorry! This episode took me around 5 or 6 days to finally finish editing and get posted. I have no idea what happened during my recording, but possibly one of my fans kicked on and I had ridiculous amounts of junk noise to remove in post. I did 2 passes with noise reduction but any more than that and I would have ruined the recording. So hopefully this sounds alright to you all. I may have spent 8 or so hours working on cutting this down to a reasonable length as well.
I don't know how I somehow never covered the topic of chemo and temozolomide.
I've got a lot of links for you here!
https://healthonline.washington.edu/sites/default/files/record_pdfs/How-Take-Temozolomide-(Temodar).pdf
^This is a great guide on properly taking your Temodar.^
https://www.thebraintumourcharity.org/brain-tumour-diagnosis-treatment/treating-brain-tumours/adult-treatments/chemotherapy/temozolomide/
https://www.cancernetwork.com/view/role-temozolomide-cns
Below is the MGMT paper I referenced
https://www.nejm.org/doi/full/10.1056/NEJMoa043331
If anyone is interested, here is the link to the show about IDH/MGMT.
https://www.podbean.com/media/share/pb-byggz-dc0367
Thank you all so much for tuning in. Please feel free to reach out at any time because you're never alone here!
I love you all!
Chris
Hello! I'm so sorry for the lack of shows the past 2-3 weeks. It's been a very busy, stressful and overall not great week but I've tried to get myself right because I was able to take some fairly nice walks outside a few days ago.
I just wanted to share how my day at the hospital went and to just sit down and talk through how I've been feeling. It really does help me.
Thank you all for listening and I hope you know how much you all help me.
I love you all!
Chris
Hello! I hope you're all doing well!
I just wanted to make an episode addressing mental health in the brain cancer community. It has been a difficult year for all of us. Having to deal with the pandemic and shutdown while still going through our own care.
I had planned on putting this out a few days ago but a combination of things meant that it took me a bit longer. Lots of things have been going on but I was determined to get this out today for you all.
Thank you all so much for the support and don't hesitate to reach out to me for any reason! I love you all!
Chris
Hello, everyone! I hope you're all doing well. This is just a quick update episode on how my day at the hospital went. I have to apologize for the audio quality being a bit bad. I was tired and definitely a little dehydrated. I usually drink plenty of water before recording anything but I definitely didn't do all of my normal things before sitting down.
Thank you so much for taking some time out of your day to listen. It means so much to me.
I hope you have a great weekend! I love you all!
Chris
Hello! Thank you for tuning in! In this episode, we have a great interview with my friend Stephen who lives in Dublin, Ireland. He takes us along as he explains how his stable life was suddenly flipped upside down. He talks about his surgery, recovery, and treatment. In addition, we cover some of his post radiation side effects and how he has found something that reliably works for him.
Every journey will be different. What works for one person, or even a group of people, may not work for you or your loved one. Always speak with your doctor but do not be afraid you be your own advocate. The same goes for your loved ones.
While not all of us can physically do the same things, diet makes a huge difference in the fight against brain cancer. One diet may not work for someone else. Find what works for you.
I want to thank Stephen so much for coming on to share his story and experiences with all of us.
If any of you would like to come on, do not hesitate to reach out!
Thank you all so much for listening! I appreciate all of you taking the time to listen to this show. I really enjoy doing it and as we get closer to the 1 year anniversary of the show, I'm determined to keep going.
Have a wonderful evening! I love you all!
Chris
I just wanted to update everyone on how my appointments went, along with the results of my MRI! I mentioned the upcoming changes for brain tumor classification system. The episode I referenced is this one:
https://braincancerpodcast.podbean.com/e/episode-6-idh-mgmt-explained/
I hope that you are all doing well and feel free to contact me for anything!
Chris
Let's kick off 2021 with listening to Paddy from Ireland who was kind enough to come onto the show and share his journey with a brain tumor. He talks about how he noticed the gradual changes which led to the tumor being discovered, the treatment he received, and how having the tumor has changed his life.
We also briefly discuss some of the differences between the healthcare system in Ireland and the US.
I want to give a huge thank you to Paddy for coming on and sharing his experiences with all of us!
This was my first time doing a show like this and I hope that you all enjoy it! It was enjoyable to edit and I've been trying to get better each time. The important part is just hearing our conversation but I wanted to make it an enjoyable listening experience no matter how you listen! If you have any tips, feel free to send them to me. This took me a little bit to edit, but I learned so much from it.
If any of you would like to do something similar, just send me an email at braincancerpodcast@gmail.com and we can work something out for both of our schedules! We all had a bit more time in 2020 but that won't stop me from working hard in 2021.
Once again, thank you Paddy!
Thank you all so much for your support! It means so much to me and I want to keep this going for as long as I can!
Chris
First thing. From the bottom of my heart, thank you all so much for the support you have shown me since I started this in March 2020. I've had a great time doing this and learning as I go. I promise that I won't stop learning and trying to improve each time.
I've met some amazing people and I get excited every time I hear from someone. It might sound cheesy, but it's true. It's rewarding to me to even think that people have taken time out of their hectic lives to listen to this!
Thank you all. 2020 has been a very difficult year, but each and every one of you have made this year so much better!
Chris
First off, I want to apologize for some of the audio in this episode. I didn't realize that my mic was picking up every tiny noise and I eliminated as much as I could. I'm going to be a bit more observant and drink extra water next time as well. Thank you for understanding.
I wanted to briefly run down what the prep work before starting radiation therapy consists of and share how it went for me. I've included pictures of a couple things I kept from my treatment as a reminder of everything I've been through.
https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/radiation/basics.html
https://www.news-medical.net/health/Side-Effects-of-Radiation-Therapy.aspx
https://en.wikipedia.org/wiki/Gray_(unit)
https://www.cancer.net/navigating-cancer-care/how-cancer-treated/radiation-therapy/what-expect-when-having-radiation-therapy
https://www.mskcc.org/cancer-care/patient-education/radiation-therapy-brain
Hello! This is just a short update after my day at the hospital on Friday, December 18th! I was trying some different EQ settings and I'm still trying to find what sounds level and not too bad. Thank you so much for tuning in. I'm going to be recording again very soon as well as making an episode outlining some of my goals for 2021. This past year has been a little bit hectic for all of us. We're almost through it though.
Chris
I just wanted to say happy Thanksgiving to all of you out there! I'm so thankful for each and every one of you and how you have made such a positive impact on my life!
No matter where you are in the world, Thanksgiving or not, tell someone "thank you" today. Reach out to someone, tell someone who has helped you in any way. This doesn't need to be a one day only thing either! Spread some positivity! We are all in similar but different journeys. It can be very difficult. That's why we need to appreciate the time we do have and share a little positivity. The world needs it right now!
Finally, I know the audio quality on this episode is not great. I forgot to move my foam pads and didn't have my usual prerecording things available. I tried to clean it up as best I could, but I was pretty much just talking and tried using a different recording position for my mouth and mic. I'm going to test a few other positions for the mic/mouth to reduce annoying noises.
Thank you all. For everything.
Chris
Hello! I just wanted to update everybody after my MRI and treatment. I was hoping to record today but due to a whole lot of noise from outside, I have a massive headache and I will try to tomorrow! Unless, the same thing happens again. Which, does seem likely.
Thank you all so much for your support! I also posted the link to the BPM which is my go-to spot after my MRIs.
Chris
Boston Public Market
Hello! Thank you all for taking the time to listen to the episode! In this episode, we go over some of the more common medications you'll hear about when dealing with a brain tumor diagnosis. Please check out the links provided below for additional information.
Feel free to contact me for anything you need at Braincancerpodcast@Gmail.com
Links from the episode:
https://www.drugs.com/sfx/dexamethasone-side-effects.html
https://www.webmd.com/epilepsy/medications-treat-seizures
https://www.drugs.com/sfx/keppra-side-effects.html
https://www.drugs.com/zofran.html
https://www.drugs.com/article/taking-your-medicine.html
https://www.webmd.com/drugs/2/drug-8486-4217/lamictal-oral/lamotrigine-chewable-dispersible-tablet-oral/details#
Hello! I just wanted to make my update episode from my day getting my infusion at the hospital today. It turned into quite a long day, but it could always be worse! The next episode has already been recorded and will be out soon!
Thank you so much, everybody!
Chris
I wanted to record an episode the evening after I got home from my treatment day at the hospital. I have no officially hit 4 years post-glioblastoma and I'm looking to add a whole lot more! Thank you all so much for the support.
Despite the generally poor prognosis, those are just numbers. Every person is different and every case is different. Treatments are being studied all the time and new clinical trials can be the breakthrough therapy of tomorrow.
The past few weeks have had me busy with ripping apart the whole area of my bedroom where I record while I built a new desk/pc, and improve my overall space. I just had a bit of a mess and went through a lot of extra effort in cable management so I didn't have wires and cords all over!
- Chris
References:
https://www.abta.org/wp-content/uploads/2020/09/ABTA-National-Conference-Program-Booklet_FINAL.pdf
https://www.youtube.com/channel/UCsK91mnT112KibIFx8anlHQ
I just wanted to update you all on how my treatment day went on Friday, August 28th. I want to apologize for not being as active over the past few weeks. It's just been a hectic and slightly stressful few weeks. I am excited to get back to doing episodes and get back on track! Thank you all so much for your support and for listening to the show. It means so much to me and you all are amazing.
- Chris
Hello! I wanted to make this short update letting you all know the results of my latest MRI. Every one is a little anxiety inducing, but I am happy to share the results with you all! I also talk about the upcoming plans for the show I'll be recording this week. Thank you all for being patient as I was just having a couple difficult weeks but I'm excited for some upcoming topics! You are all awesome, and thank you again.
Chris
I just wanted to post a quick update on how my day at the hospital went as well as upcoming plans for the show! Thank you all so much for listening!
Chris
Hello! Thank you for listening! In this episode, we are just doing a brief introduction to glioblastomas. I intended to make more detailed topics on chemo and immunotherapy soon so that I have enough time to break things down. It's been a hectic few days so thank you all for bearing with me.
Chris
Links:
https://www.abta.org/tumor_types/glioblastoma-gbm/
https://www.mdanderson.org/cancer-types/glioblastoma.html
Trial I am on:
https://clinicaltrials.gov/ct2/show/NCT02336165
I just wanted to let everybody know that I'm going to be recording an episode to be released in conjunction with National Glioblastoma Awareness Day on July 22nd. I also talk about some other upcoming plans. Thank you all so much for listening!
- Chris
In this episode, we go over what an ependymoma is, what the treatment is like and tell the story of an 11 year old Maggie Miller and how an ependymoma changed her life forever. 9 years later, she is the founder of CancerTalkFoundation.org which is a way for young people who have cancer or have had cancer to talk to each other and get advice and tips from her and other people who are in a similar situation. She also has a Facebook set up which I recommend if you use Facebook!
Thank you all for listening and a big thank you to Maggie for sharing here and for giving back to the community in such a positive way!
Make sure you subscribe on whatever app/site you use to listen to the show!
Chris
Links!
https://www.cancertalkfoundation.org/
https://www.facebook.com/CancerTalkFoundation/
https://en.wikipedia.org/wiki/Overall_Position
https://www.cancer.gov/rare-brain-spine-tumor/tumors/ependymoma
https://www.abta.org/tumor_types/ependymoma/
https://www.cern-foundation.org/education/ependymoma-basics/ependymoma-overview
https://en.wikipedia.org/wiki/Ependymoma
Hello! This is just a short update from my day at the hospital. I enjoy making these just as a way to share how my day went, how I'm feeling and what I have coming up. Thank you all for taking the time to listen. It means so much to me.
Chris
https://www.universalhub.com/2020/empty-city-orange-line-wednesday-morning
In this episode, we cover some of the challenges and issues that may come if you have a child that has been diagnosed with a brain tumor. A very special thank you goes out to Kitty for answering some questions that I had regarding the the experience of being a parent of a young child with a brain tumor.
I appreciate you all and thank you so much for listening! Please subscribe to know when the next episode is up!
Chris
Links referenced in the show:
ABTA Conference 2020
https://give.abta.org/event/abta-2020-virtual-national-conference/e278784
https://www.abta.org/financial-assistance/
https://www.cancer.gov/about-cancer/coping/caregiver-support/parents#child-questions
I, Hope on Steam (recommended!)
https://store.steampowered.com/app/448960/I_Hope/
I wanted to create a trailer for the podcast to break down what we do here on the Brain Cancer Podcast. Thank you so much for taking the time to listen to me. It means so much to me.
Hello! Thank you for listening to this quick update after I had my meeting with my doctor and I got the results of my latest MRI. It's a short episode, but I'm trying to give myself more opportunities to record my thoughts as well as share them. Episode 11 will be recorded soon but thank you for all the support. It really means a lot to me and it's been a good personal goal of mine to improve.
The audio setup was just a pop filter as opposed to how I've done it with just a windscreen. I'm not sure which I like better so please give me your opinions.
Thank you again!
Chris
Hello! Thank you for taking the time to tune in. I plan to do multiple episodes covering children with brain tumors and dedicate episodes to some of the more common, and rare brain tumors that a child may be diagnosed with. This is meant to be an overview and introduction episode.
If you would like to tell your story of being a parent of a child with brain cancer, please reach out! I'd love to hear from you. You could also come on and tell your story in your words. I'm open to everything and I can handle all recordings on my end.
Thank you so much for listening and make sure to subscribe to get notified when I upload! I've been trying various recording setups to get the best sound but I think I know it's on me to slow down. Thanks for your patience as I learn!
My friend Caitlin I mentioned in the episode!
https://www.youtube.com/watch?v=7ItHXvYW844
Below are the pages I referenced:
https://blog.dana-farber.org/insight/2018/09/difference-cancer-adults-cancer-children/
https://www.hopkinsmedicine.org/health/conditions-and-diseases/brain-tumor/pediatric-brain-tumors
https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/brain_tumor/center/pediatric/tumors/
https://www.mskcc.org/pediatrics/cancer-care/types/pediatric-brain-tumors/diagnosis
ABTA Webinar:
https://www.youtube.com/watch?v=sVk7MZVOumU
Hello, everyone! I hope you're all doing well. I just wanted to record my thoughts after my treatment at the hospital on June 5th, 2020. It was a couple stressful days in which my phone broke and dealing with getting a new phone I could mod to use Android how I like to use it. I'll be recording a proper episode this week. Thank you for listening to the show and for listening to me talk about how I've been doing. It really helps me as well.
Chris
This episode turned out to be a little longer than I originally had intended but I want to thank you for taking the time to listen to the show! We are going to talk about some of the fake cancer cures that are being marketed to the most vulnerable people. I wanted to explain some of the most commonly used marketing terms that these frauds will use to try to scam you out of your money.
I understand that a quick cure or all-in-one sounds appealing, but take a step back and think about the facts.
Some of the articles referenced in the show:
https://quackwatch.org/about/altseek/
https://www.theguardian.com/science/2019/jul/14/cancer-fake-news-clinics-suppressing-disease-cure
https://www.theguardian.com/science/blog/2017/jan/24/cancer-treatment-myths-clean-eating-cannabis-homeopathy-alternative
https://www.independent.co.uk/life-style/health-and-families/health-news/fake-news-health-facebook-cruel-damaging-social-media-mike-adams-natural-health-ranger-conspiracy-a7498201.html
https://www.fda.gov/consumers/consumer-updates/products-claiming-cure-cancer-are-cruel-deception
https://www.fda.gov/consumers/consumer-updates/6-tip-offs-rip-offs-dont-fall-health-fraud-scams
https://sciencebasedmedicine.org/miracle-mineral-supplement-as-a-cure-all/
https://www.houstonpress.com/news/heres-why-authorities-want-to-stop-the-sale-of-jim-humbles-miracle-cure-8909556
https://abc7.com/church-of-bleach-genesis-ii-2-health-and-healing/1578279/
https://en.wikipedia.org/wiki/Miracle_Mineral_Supplement
https://realfarmacy.com/ (Note) You can't actually click on the top with the DMCA, legal disclaimers and privacy policy..it's just a picture.
In this episode, I wanted to point out some statistics about the rates of depression and anxiety in brain cancer patients. It's important to address these issues because they can affect all of us. I try to give a couple ideas to help overcome the stress and anxiety which has seen an increase due to the pandemic.
Please let me know if you have any suggestions, ideas or comments.
If you ever feel like you can't reach out to anyone, I am always available. Don't hesitate to contact me.
I'm posting some links from the show down below here. Thank you all for listening and make sure you subscribe and rate the show!
Psychology Today
https://www.cancer.gov/about-cancer/coping/feelings/depression-hp-pdq
https://www.cancerhealth.com/article/mental-health-cancer
https://blog.ochsner.org/articles/mental-health-tips-for-cancer-patients-during-coronavirus
https://www.cedars-sinai.org/newsroom/expert-qa-cancer-covid-19-and-mental-health/
https://www.cancerresearchuk.org/about-cancer/cancer-in-general/coronavirus/living-well
Head and neck cancer study
Hello! This episode was recorded after my most recent trip to the hospital for my treatment and despite taking a nap, I was still a little tired. I just wanted to record something that night and it helps me keep my mind active. The links for the studies will all be posted here as well as on the website braincancerpodcast.com so feel free to check it out.
What do you want to hear on the next episode? Let me know and thank you so much for listening!
Chris
Articles referenced:
Gene markers study by NIH
How mutations in a single gene alter the course of a deadly brain cancer
IDH study by the NIH
Gene mutation defines brain tumors that benefit from aggressive surgery
MGMT Methylated
MGMT Promoter Methylation, Tumor
MGMT Gene Silencing and Benefit from Temozolomide in Glioblastoma
Personalized treatment strategies in glioblastoma: MGMT promoter methylation status
Glioblastoma (GBM)
In this episode, I give a quick recap of how my last MRI went. Then we talk some statistics, charities and things you can do to help bring awareness to brain cancer!
I sort of rushed this and I don't like how the audio turned out, but I wanted to get this one out for early May. I also messed up the volume settings on my original template so please let me know if it's too loud, or not loud enough. I mixed it to the usual level, but I have the files so I could adjust it quickly if needed.
Feel free to give me your thoughts and what you want to hear about. I'm trying my best to cover what I can and would love to do more in-depth episodes.
Thanks again!
Chris
Links from the episode:
https://braintumor.org/brain-tumor-information/brain-tumor-facts/
https://seer.cancer.gov/statfacts/html/brain.html
https://www.abta.org/about-brain-tumors/brain-tumor-education/#statistics
https://www.abta.org/
https://www.thebraintumourcharity.org/
https://www.curebraincancer.org.au/
I made this episode 2 days before my upcoming brain scan. I just wanted to talk about some of the things that I do to prepare for my scans along with tips in general to help keep your mind occupied in the weeks leading up to a scan. Thank you all for listening!
In this episode, we talk about clinical trial statistics and why you should ask you doctor about clinical trials that may be available. Please give this show a like and be sure to follow on Twitter @BrainCancerPod and be sure to visit Braincancerpodcast.com where I will post news and resources for you all to check out!
https://clinicaltrials.gov
Study I am on:
https://clinicaltrials.gov/ct2/show/study/NCT02336165
Sources:
https://braintumor.org/brain-tumor-information/treatment-options/clinical-trials/
https://www.webmd.com/cancer/immunotherapy-risks-benefits#1
https://www.cancer.gov/news-events/cancer-currents-blog/2018/immunotherapy-glioblastoma
Trials mentioned:
https://www.news5cleveland.com/lifestyle/health-and-fitness/university-hospitals-part-of-clinical-trial-that-uses-the-polio-virus-to-shrink-brain-tumors
https://health.ucsd.edu/news/releases/Pages/2020-01-16-zika-virus-key-into-brain-identified-leveraged-block-infection-and-kill-cancer-cells.aspx
https://www.sciencedaily.com/releases/2019/07/190725092538.htm
https://www.webmd.com/cancer/brain-cancer/news/20090506/fda-oks-avastin-for-glioblastoma
https://www.medicinenet.com/optune_novottf-100a_system/article.htm#what_is_optune_and_what_is_it_used_for
This episode is meant to be a quick introduction into the terminology of a diagnosis and treatment that can hopefully help anyone pick up what can be an overwhelming amount of information.
If you have suggestions or want to be on the show, please reach out to me! I can do all the recording on my end so all you need is a way to call me.
Any questions or suggestions, please let me know. Braincancerpodcast@gmail.com or @Braincancerpod on Twitter or just message me on Discord.
Thank you all for listening! Episode 3 will be available soon
Welcome! This is the first ever episode of the Brain Cancer Podcast! This is meant to be a basic introduction episode and I'm excited to do more! I was a bit nervous, but I'll get past that.
Subscribe to the show and visit braincancerpodcast.com for updates as I try to build that website into something helpful!