Some of our Blog readers, have attended AnCan’s Speaking Freely virtual group. That’s our men-only meeting that talks about everything and anything EXCEPT treatment. It’s open to all men living with a chronic condition and provides a great opportunity twice a month to get things off your chest and to air issues where another perspective may help. Like all our meetings, it’s free and drop in on the 1st and 3rd Thursday of each month starting at 8.00 pm Eastern in our AnCan Barniskis Room.
December’s second meeting of the month hosted a newbie to Speaking Freely but not to our AnCan Groups. Alan Babcock has been attending our prostate cancer groups for a while; he was finally able to vacate his schedule to make a Speaking Freely group. Alan recently retired from a hugely meaningful and rewarding career where he supervised Disability Services for students at Penn State – Go Nittany Lions!! Over the years, his team enabled thousands of disabled students to graduate .
In the course of the SF group conversation, we spoke about how cancer has impacted our lives – positively and negatively. When Alan mentioned he’d be keeping track of all the gifts received from his prostate cancer experience, we immediately asked for a copy – and here it is.Thanks for sharing your vulnerabilities, Alan and for allowing others to learn and benefit! (Editor: We’ve chosen to put Prostate in parenthesis, because for the large part, we think this applies to most all cancers!! )
Gifts of (Prostate) Cancer
1. I experienced a flood of love and good wishes from family, friends, and colleagues.
2. I returned to therapy, and I deepened my self-understanding.
3. I had the opportunity to confront my mortality, which taught me to think about decisions I make day-to-day.
4. I saw my wife do battle with the medical establishment on my behalf and win.
5. My love for my wife deepened as we confronted a life crisis.
6. I watch myself travel from despair to acceptance. Once again, demonstrating my resilience to myself.
7. I was given the opportunity to learn how to love my wife in new ways.
8. For about the hundreth time, I saw my wife was a tower of strength, and I learned once again that she would always be there for me.
9. I felt my wife’s unconditional love as she held me while I cried for all of my losses.
10. I experienced what it was like to have somebody pray for me.
11. I took control of my well-being by firing my first urologist and finding better care elsewhere, which was empowering.
12. I talked to other men who had prostatectomies about highly personal subjects.
13. I started to learn how to engage in Mindfulness rather than just talking about it.
14. I experienced a high school friend showing how much he cared by not only investigating where I received treatment, but also the physician who was going to perform the prostatectomy.
15. My brother-in-law showed how much he cared by arranging a consultation with a physician at the Dana-Farber Cancer Center.
16. A professor, who I did not know well, gave me her telephone number, and told me to call any time day or night.
17. I learned what was helpful and what was unhelpful when someone was facing a life crisis.
18. I joined a support group, in which I learn much about prostate cancer and in which I receive support.
19. I am learning to accept my limitations.
20. I have helped other men, which has been rewarding
Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 19, 2022
Immediately preceding tonight’s meeting we also recorded a 90-minute discussion with one of AnCan’s favorite doctors, Eleni Efstathiou — Dr. E — worth watching! (https://youtu.be/-ssBargObwE).
Our one and only Fundraising Campaign of the year takes place this month. All on the AnCan distribution already received our ‘ask’ that also includes AnCan highlights from 2022. We ask you to consider a donation based on the support you’ve gotten from these recordings. Read our letter at https://us14.admin.mailchimp.com/campaigns/show?id=7976018
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/
Editor’s pick: Brokering a deal: C is ready to ditch his Embr Wave hot-flash device and P is searching for a bargain; the statins debate; many ideas on treating hip pain. (bn)
Topics Discussed
$200/hour interview available for castrate-resistant men; newcomer couple with lymph-node recurrence after prostatectomy; reminder of our caregiver and Speaking Freely groups; up-to-date treatment plan from a new radiation oncologist; good ADT response but hates hot flashes; hot flashes — what works, what doesn’t?; cutting a deal in used Embr Waves; the debate over statins; finally, the last Eligard shot; wealth of advice for hip pain that’s left doctors at a loss.
Stressed? In pain? Take a break with us while we paint a relaxing winter scene with your peers who “get it”. While this is our last art class of 2022, we are coming back strong in 2023! (In fact, you can register here)
Supplies:
Acrylic paints: Blue / Purple / Yellow / White / Brown / Black / Red (or your choice bird color)
Brushes: Flat 3/4in OR similar size; Round size #8 or smaller
We LOVE our Art Friends here at AnCan! Not only do we create beautiful things together, but we take the time to come together as a community. All of our “students” are learning more and more each time, and we use those skills in other classes.
We also truly care about what matters to you. In fact, this art class project was requested by AnCan Art Friend Sharon, who wants to see the northern lights in person. Do you have any ideas for future classes? Just let us know!!
For this class, you’ll need
Paper
Your choice of medium – markers, pen, pencil, colored pencils, paint, watercolor pencils, anything that can mark.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 15, 2022
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/
Editor’s Pick: Severe side effects – a “Lupron Frankenstein” and an abdomen swollen by chemo – plus a surprise case of shingles. (bn)
Topics Discussed
Newcomer from northern Michigan finds he’s 5+4; shingles brought on by ADT?; end of radiation and a steak dinner; benefits of pelvic floor therapy; Lupron turns a newcomer’s life upside down; are Orgovyx and darolutamide chemotherapy? ; mini-poll on hot flashes: who uses what?; putting chemo on pause after success; self-advocating finally gets him Pluvicto; “what is chemo?” revisited; funny-smelling stool following chemo; chemo abdominal swelling diagnosed as ascites — he’s now on Pluvicto and improving; end-of-life discussions; gabapentin for neuropathy leaves him loopy; latest scan shows 30 bone mets gone.
Chat Log
Richaed Wassersug to Everyone 6:36 PM
Herb,
Richaed Wassersug to Everyone 6:36 PM
Can you put the ADT and Herpes ref here?
Herbert Geller to Everyone 6:37 PM
Andrologia . 2018 Mar;50(2). doi: 10.1111/and.12863. Epub 2017 Aug 8. Increased risk of a herpes zoster attack in patients receiving androgen deprivation therapy for prostate cancer F J Wu 1, L T Kao 2, S Y Sheu 1, H C Lin 3 4, S D Chung 4 5 6
Bob G to Everyone 6:37 PM
I had shingles at age 30 due to stress.
Paul Freda Lake Worth FL to Everyone 6:41 PM
Stan How is everything going with you ? Any new treatments ? PSA stable ? I am smae except for a spot on my Pancreas. Doc says its stable and not likley to become cancerous. Hope he is right. Paul Freda AEPi 1969
Steve Roux, Elk Rapids, MI to Everyone 6:44 PM
Hey guys, here is the clinical trial info – NCT#04513717 Cancer Research Consortium of West Michigan NRG-GU009, “Parallel Phase III Randomized Trials for high risk prostate cancer evaluating intensification of concurrent therapy for higher genomic risk with radiation”
Herbert Geller to Everyone 6:54 PM
Here is more information on the trial by the NRG:Parallel Phase III Randomized Trials For High Risk Prostate Cancer Evaluating De-Intensification For Lower Genomic Risk and Intensification of Concurrent Therapy for Higher Genomic Risk with Radiation (Predict-RT*) *Prostate RNA Expression/Decipher To Individualize Concurrent Therapy with Radiation Principal Investigator Paul L. Nguyen, MD, Co-Principal Investigator(s) A. Oliver Sartor, MD
Steve Roux, Elk Rapids, MI to Everyone 7:07 PM
My brother David, with ALS, was given a weekly ADT shot, NOT Lupron, which gave him these same symptoms I hear him saying. David quit the weekly shots just to have some level of normal quality of life.
Joe Gallo to Everyone 7:12 PM
len@ancan.org
Joe Gallo to Everyone 7:12 PM
embrwave
Bob G to Everyone 7:13 PM
I have a question, but have to step out for 5 – 10 min.
Steve Roux, Elk Rapids, MI to Everyone 7:14 PM
Guys, THANK YOU for allowing me to sit in for this. I will be back for future meetings! But I need to go attend another meeting!
Julian Morales – Houston to Everyone 7:38 PM
And many more!!!!
AnCan – rick to Everyone 7:40 PM
Thank you all
AnCan – rick to Everyone 7:50 PM
Beginners Guide to the End, BJ Miller MD and Shoshana Berger
Frank Fabish Columbus OH to Everyone 7:56 PM
Got to go guys. Thanks for the updates. I see my Doc next Tuesday for Labs and Exam.
December’s second meeting of the month hosted a newbie to Speaking Freely but not to our AnCan Groups. Alan Babcock has been attending our prostate cancer groups for a while; he was finally able to vacate his schedule to make a Speaking Freely group. Alan recently retired from a hugely meaningful and rewarding career where he supervised Disability Services for students at Penn State – Go Nittany Lions!! Over the years, his team enabled thousands of disabled students to graduate .
