You already know that at AnCan we are all peers, did you also know how much we love sharing resources with you? Well I have a resource that I would love to share! Camp Mak-A-Dream.
The view at CMAD
I had the absolute privilege of attending last year’s YAC (Young Adult Conference) for campers aged 18-35 with my fiancé Brian, and I’ve already applied for this year’s YAC since applications opened January 3rd. I enjoyed it so much that I set a reminder on my phone so I could apply as soon as possible!
I had heard about CMAD from lots of people in the community. From an AYA social worker, friends, and it was even mentioned on our webinar with Nancy Novack from Nancy’s List – Nancy’s Top Ten An Evening with Nancy Novack. To be honest, I was concerned it was overhyped. No place could be that incredible, but it is.
Camp Mak-A-Dream is in Gold Creek, Montana which was unbelievably gorgeous. I had to pinch myself every time I went outside. The ride from the airport (Missoula/MSO) to the camp was mile after mile of scenic beauty. The air is fresh, the grass is green and lush. The airport is used to campers coming in, and even TSA is super nice!
So what was it like?
Staff were waiting at the airport to greet me with snacks and drinks. I met my fellow campers and we chatted. T Staff take care of your luggage and guide you to the bus. No worries about transportation here, they have it covered to and from airport. As soon as I exited the CMAD bus when we arrived, people where cheering for me and rushing to give high fives and pats on the back for a warm welcome. I felt like a rock star.
Brian with Larry, and me with Roger!
We had to get serious stuff out of the way before the fun could begin, as CMAD is medically supervised, I had to check in with the medical team to go over my medications, and they asked questions to make sure they can take good care of me. They also do this so you know where to get medical help if you need it, and I did, twice. Someone is always on call, and you’ll receive the same care as the oncologists office. One of the medical team members even gave me a check up when I had an issue at breakfast so I could get on with my activities for the day, instead of being at the clinic.
That was great, because as a cancer patient, I’ve been in the clinic ENOUGH! Even though I’m an adult, it gave my mom so much peace of mind to know that I was fully taken care of.
They had fun activities planned to help me get to know other campers, and then we had a full buffet style dinner. After dinner we split up to do activities of our choice, I stayed up and played card games with my fellow campers and laughed so hard I cried, and my stomach hurt. Then it was time for bed.
Every single day was full of activities, however they also schedule rest time daily. You never have to do an activity you don’t want to, and if you don’t feel well, you can always rest.
Here are some activities I did:
Photo Credit – CMAD
Archery, cake decorating, geocaching, scavenger hunt, high ropes painting, coloring, tie dying, cornhole, swimming, air rifle shooting (taught and supervised by Montana Parks and Wildlife), zip lining, outdoor camping, campfires, horseback riding, yoga, meditation, journaling, advocacy class (because you can always learn more!), and so much more, this is a short list!
They have a bunch of other stuff you can do like mini golf, outdoor sports, art, it is incredible.
Everyday I had a chance to connect with my peers regarding our cancer experiences, and at AnCan, you already know how much we support this. I laughed, I cried, and I healed. There are lots of rituals and experiences that they have, that I will not share here, because they were so meaningful to me, and the added benefit of surprise complimented that.
Because I didn’t have to worry about anything (my medications, health, food, dishes, no cell service so no calls, current events, etc) it gave me time to truly focus on myself. It was much needed time designated time for me. I conquered fears, I learned new skills, and I left a much better Alexa.
Would I recommend camp to AnCaners?
YES!
Camp is FREE!! (only have to pay for travel, travel scholarships are available)
I hope you will check out what camps they offer and apply for yourself (or you and your carepartner at their caregiver camp). I hope to see and hear about your camp experiences in the future.
Questions about camp experience I didn’t answer here? Email me at alexa (@) ancan.org.
Bang your drum… it could make you smarter and healthier!
I don’t want to work I want to bang on the drum all day I don’t want to play I just want to bang on the drum all day
–Todd Rundgren
Twice in the last several months, the topic of drumming came up in our AnCan Men Speaking Freely group and it generated some excitement both times. So this month’s invite will be on that topic.In my former practice whenever I have given a non-verbal treatment there is a big relief that no talking is involved. In bypassing the verbal and left-brain systems we gain access to a typically unused part of ourselves. I wonder if we can use this approach to cope with our serious illnesses and have a better life?
Our brains have a characteristic called plasticity, the ability to change. You may have heard of this regarding the little finger brain circuit of violinists; it grows as they become proficient. Drummers also have different brains than the rest of us. They have fewer, thicker nerve fibers between the two halves of the brain. They have more efficiently organized motor cortices. (Schlaffke, 2019). Because of this, drummers can do things that we can’t. They can coordinate the two sides of the brain better, and perform motor tasks with greater efficiency. They can play different rhythms with each hand and foot at the same time.
Schlaffke’s subjects had drummed many hours per week for decades. But Bruchhage’s (2020) subjects trained for only 8 weeks and showed several changes in the cerebellum plus changes in the cortex, showing not only cerebellar plasticity but also communication and coordination between the cerebellum and brain sensorimotor areas as well as areas for cognitive control.
Drumming is very complicated, which is why it’s unfair that the lead guitar and vocal guy gets all the girls (Greenfield, J. 2022).
For some reason, there is a close association between beat synchronization (integrating auditory perception with motor activity) and reading ability in children (Bonacina, 2021). Higher synchronization ability predicts better literacy skills. Maybe early intervention involving drumming can improve literacy in kids?
Cahart et.al (2022) showed that drumming can improve behavioral outcomes for autistic adolescents and elucidated some of the neurology involved. Does this mean it could help us?
Drums have been used for millennia for healing, inducing trance, and even psyching up soldiers.
We have learned that drumming is not just about waking up the right brain, but also about connecting the sides of the brain, and the cerebellum with the cortex. It can induce alpha brain waves. It can release endorphins. Even T-cells respond to drumming (Bittman). It induces present-moment experience, which we often work toward to deal with death anxiety. Interpersonal connections are made when people drum together. Despite the effort involved, it induces relaxation. I have come across papers describing drumming and music therapy for a wide variety of emotional problems and currently, there are 8000 music therapists in the US.
How about for us? We see above the possibility of reductions in anxiety, tension, pain, isolation, depression, and over-thinking the past and future. There are many studies of music therapy in ICUs, with patients on ventilators, easing hemodialysis pain, with positive results. Also, helpful with narcotic use, social integration, and depression. MSKCC uses music therapy.
With terminal cancer, there is data showing that music helps breathing, QOL, psychospiritual integration, reducing pain in chemotherapy, radiation, and helps pediatric breast and lung Ca patients (Ramirez 2018, Hilliard 2003, Burns 2015 Tuinmann 2017, Barrera 2002, Li 2011, Lin 2011). Atkinson (2020) found improvement with fatigue. I couldn’t find any studies focused only on Prostate Cancer.
Well, all this scholarly stuff is really unnecessary to anyone who ever banged a pot with a wooden spoon. Kids love it. Adults love situations where it’s OK to be wild and make noise, such as drumming circles and Pound classes. It’s just fun and feels good.
Dr. John Antonucci
Editor: Dr. John wrote this for our Men Speaking Freely Reminder on Dec 7, 2023. It’s such a perceptive, helpful and instructive piece, AnCan wanted to share it widely.
This could be scary…It’s almost open enrollment season for Medicare!
A dreaded time to receive multiple communications in untold ways that often read like a foreign language. It’s only fitting that we talked about it the day before Halloween.
Join AnCan as we bring experts Amanda Goodstadt, Esq. from Triage Cancer, and Medicare Insurance Broker Kim Umphres to explain all things confusing around 2024 Medicare insurance options, and make this enrollment season a little less spooky and intimidating.
Our panel will explain the whole menu from alphabet soup plans to doughnut holes! Learn the difference between Traditional and Advantage plans and if you can switch between them, what HMOs and PPOs mean, how to sign up to see any doctor anywhere and much more.
Click here for a special handout from Triage Cancer with Medicare resources.
Special thanks to Bayer, Pfizer, Myovant Sciences, Foundation Medicine, Myriad Genetics, Janssen – Johnson & Johnson, Telix, and Blue Earth Diagnostics for sponsoring this webinar.
To SIGN UP for any of our Virtual Support groups, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 24, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
UPCOMING WEBINAR – Let’s talk Medicare 2024!Monday, Oct 30 8.00 pm Eastern Register at http://tinyurl.com/ancanmedicare . We plan NOT to make this scary!!!
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s pick: Facing the future as a three-year drug holiday falters. (bn)
Topics Discussed
Smooth recovery for kidney transplant patient who chose surgery over radiation; beginning of the end for a three-year drug holiday; turning to Pluvicto after chemo failure — which treatment is worse?; what it’s like undergoing Pluvicto therapy yet again; off ADT for 18 months, but now unexplained fatigue as PSA rises; controversy over Jonathan Epstein; prophylaxis for ADT bone loss; when triplet therapy makes sense; putting out the welcome mat for questions.
Chat Log
Peter Kafka – Maui · 7:20 PM
How much radiation from Pluvicto can a person safely have if multiple cycles are involved?
Al L · 7:26 PM
i didn’tmention it but I talk to Dr Scholz next week as well. He has patients that have had more Pluvicto sessions than I have had. I will be asking him about tolerating multiple rounds.
Peter Kafka – Maui · 7:33 PM
Has Marc had previous PSMA scans? Have they shown up stuff? Just wondering with low PSA profile.
Rick Davis · 7:45 PM
The Active Surveillor
Gary P · 7:52 PM
Here is the WP article:
Gary P · 7:54 PM
https://www.washingtonpost.com/health/2023/10/22/johns-hopkins-jonathan-epstein-pathology/
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 26, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s pick: PSMA scan miraculously clear but they waited 2+ hours to take it — is it great news or a washed-out scan?
Topics Discussed
Lupron, radiation, and chemotherapy haven’t worked for non-PSMA-avid Vietnam vet who’s now struggling with neuropathy; kidney transplant complicates a choice between surgery and radiation; five years of ADT success despite multiple bone mets — due for a drug holiday?; metastasis is gone in his new PSMA scan — but maybe they bungled it; time to scale back from monotherapy to nothing?; check your urine before depending on calcium supplements or they might not work; Bayer won’t help pay for darolutamide — what are my options?
Chat Log
Jim B · 6:31 PM
Hello David!
AnCan – rick · 6:37 PM
Sumit Shah is a GU med onc
Jim Marshall, Alexandria, VA · 6:41 PM
Am Vietnam Vet. Marshall-James@comcast.net 703-338-7341 and a 100% Disbaled Vet
Joel Blanchette Reston, VA · 7:01 PM
Paller Channing
Matt Krieger · 7:06 PM
For Boykin, what makes a protastectomy less likely to cure, is it the evidence of vesicle invasion?
Matt Krieger · 7:09 PM
Thank youm and this sounds familiar, my nomogram had a lower likelihood of cure with protastectomy than what Boykin’s sounds like.
Jim Marshall, Alexandria, VA · 7:26 PM
Sounds like a Bone Scan is in order to find out if the Bone Meds are still active. Jim
Jim Marshall, Alexandria, VA · 7:28 PM
Abby for 5 years, 13+ months Holiday and Testosterone took 10 months to begin to recover. Then it was 113, 33, 134.
Boykin Jordan – Springfield, VA · 7:29 PM
What is oktehome?
Jim Marshall, Alexandria, VA · 7:29 PM
Castrate you like they do bulls.
Gary P · 7:29 PM
orchietomy
Jim Marshall, Alexandria, VA · 7:30 PM
Goodbye the family jewels.
Gary P · 7:30 PM
orchiectomy
Boykin Jordan – Springfield, VA · 7:30 PM
I got it now. Thanks!
AnCan – rick · 7:32 PM
https://www.prostatecentre.com/about-…
Kirt Schaper · 7:39 PM
PYLARIFY® (piflufolastat F 18) Injection Fluorine F 18 decays by positron ,(β+) emission and has a half-life of 109.7 minutes
AnCan – rick · 7:40 PM
Elimination Half-life: 3.47 hr Excretion: Urine (~50% [first 8 hr post dose])
Kirt Schaper · 7:41 PM
elimination half-life is the length of time required for the concentration of a particular substance (typically a drug) to decrease to half of its starting dose in the body
David Muslin · 7:43 PM
Very smart to measure the time waiting and checking name on pee cup. Good lesson for us all.
AnCan – rick · 7:43 PM
LEARN MORE ABOUT HOW 18F IMPROVES IMAGE CLARITY PET/CT with 18F has higher sensitivity and better resolution than PET/CT with 68Ga, potentially facilitating more accurate interpretation and reporting of disease assessment16 18F has a longer half-life than 68Ga (110 minutes versus 68 minutes), allowing for more widespread availability as well as more convenient and flexible scheduling for patients and staff3,17 https://www.pylarify.com/pca-imaging
Bob McHugh · 7:45 PM
My PLY scan at Mtg. Sinai was performed at 76 minutes,
Unknown · 7:49 PM
Thanks all!
Unknown · 7:57 PM
Thank you, Rick, Dr. John, James M. , and everyone! I look forward to participating next week.
Jeff G · 8:15 PM
Since I started eating tofu daily and recently started soy isoflavones, my hot flashes are gone
Jeff G · 8:16 PM
IsoRel 200 mg daily ( isoflavone)
With terminal cancer, there is data showing that music helps breathing, QOL, psychospiritual integration, reducing pain in chemotherapy, radiation, and helps pediatric breast and lung Ca patients (Ramirez 2018, Hilliard 2003, Burns 2015 Tuinmann 2017, Barrera 2002, Li 2011, Lin 2011). Atkinson (2020) found improvement with fatigue. I couldn’t find any studies focused only on Prostate Cancer.
