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
A heads-up – Dr. E will join us at the next meeting, Dec 19! We’ll start an hour early.
Calendar peculiarities make this our first Tuesday meeting in three weeks. The recording ends suddenly but it’s complete — the meeting came to an unexpected end when one of the moderators pushed the wrong button.
This month marks our only fundraising campaign of the year. All on the AnCan distribution already received our letter, which includes AnCan highlights of 2022. Please consider a donation based on what you’ve gotten from these recordings.
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: Metastasis with PSA of 1 uncovered by chance. Plus a memorable quote from Dr. Antonarakis: “Don’t remember your case? Mark, we could write a movie about your case!” (bn)
Topics discussed
Marking the passing of an on-and-off participant who had his own ideas about therapy; abdominal growth tips off primary care physican to a lymph node metastasis despite PSA of 1; strategies to fill the bladder just right for radiation; scary seizure-like episode at the wheel after chemo; reread of PSMA and Axumin scans at another hospital finds previously unrecognized lesions; “Don’t remember your case? Mark, we could write a movie about your case”; good PSA response from chemo with few side effects; a seldom-made appeal for AnCan donations; low platelets puts a pause on chemo and might preclude Pluvicto later; white blood cell count still isn’t rising; pressing Orgovix maker on PPI interactions; emancipated from ADT by Dr. E; pain-free at last; concordance scan for Pluvicto patient?; ankles swelling — why?
Chat Log
Pat Martin · 6:12 PM I really appreciate your input. I will get bone scan and whole body scan tomorrow. Next week I’ll get results
Peter Kafka – MAUI · 6:36 PM I have a general question prompted by Cliff’s story. Is it routine for tissue taken from a TURP to be analyed for pathology. Might a GL-9 been seen earlier on a lower level?
Tonyfig · 6:37 PM Is there a link for Prostate Cancer Treatment Guidelines?
Carl · 6:43 PM www.pcf.org/guide/prostate-cancer-patient-guide/
AnCan- rick · 6:54 PM For NCCN PCa Guidelines, google NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines(r)) Prostate Cancer Version 4.2022 – May 10, 2022 . I do not have the link , just the download.
David M · 6:59 PM Could have been dehydation?
David M · 6:59 PM dehydration
AnCan- rick · 7:52 PM https://www.foxchase.org/daniel-geynisman
Len Sierra · 7:57 PM Types of PPIs Omeprazole (Prilosec), also available over-the-counter (without a prescription) Esomeprazole (Nexium), also available over-the-counter (without a prescription) Lansoprazole (Prevacid), also available over-the-counter (without a prescription) Rabeprazole (AcipHex) Pantoprazole (Protonix)
Peter Kafka – MAUI · 7:57 PM Pantroprazole, generic name protonix
AnCan- rick · 7:58 PM Maria Calkins …. Myovant
Frank Fabish Columbus OH · 8:09 PM got to go. thanks for listening.
James Davidson (Houston) · 8:14 PM Gotta run – good evening, gents!
Mark Thompson, Rehoboth Beach, DE · 8:14 PM My thoughts and prayers are with you
Herb. Thanks again for all your help. Pain can really get to you.
Pat Martin · 8:15 PM Heading out. See you in a couple weeks
Good news to fans of our art class! We’ll be painting a classic acrylic painting this December 15th at 8pm ET
If you’re able to or interested in signing up, then here’s all the info you need
It’s another BYOAS class – Bring Your Own Art Supplies
Please sign up here if you’d like to join us! All ability levels are welcome! I’ll be instructing everyone step-by-step on how to paint this. As always, feel free to add your own flair of creativity – different trees, different arrangement of trees, more birds, more branches, different colors, anything to make you love it even more 🙂
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
Canvas: 9in x 12in (or whatever size you want!)
Water / napkins / paper plate or palette
We’ll be using a whole lot of white paint, so make sure you have plenty of that.
As for brushes, sizes are approximate. If you have something smaller, it may take a little longer (maybe!) and if you have a size a little larger, it may take a shorter amount of time (again, maybe!).
If you have family coming in for the holidays, they’re absolutely welcome to have fun with us!!
I will send out the link to class a day or so beforehand 🙂
As always, please let me (Hannah@AnCan.org) or Alexa (Alexa@AnCan.org) know if you have any questions, comments, or suggestions. Hopefully you can join us!
Don’t forget to sign up at the link above. Looking forward to seeing you next week!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 5, 2022
Back after a two-week holiday hiatus, and Boy – do we have a lot of good action for Recording Participants!! Listen on …
Just a heads-up everyone – mark on your calendar that Dr. E may be joining us on Dec 19 – we’ll start a little early!
December heralds our one and only Fundraising Campaign of the year. 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 gained listening to 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/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: AnCan surfaces a significant Orgovyx side effect … and what else but anxiety comes up again throughout! (rd)
Topics Discussed
Success with Keytruda/pembro; anxiety recurrence; pain, ,opiates causes question – cancer or spinal deterioration? …and more anxiety; significant Orgovyx interaction with PPI drugs; when to start RT on recurrence post RP; hot spot in gland should trigger action; ARV-766 trial vs restoring blood counts for more chemo and Pluvicto; restarting abi; all steady; hot flashes; more of Keytruda/pembro – may take time; foamy gland PCa stable
Chat Log
Peter Kafka – MAUI to Everyone 05:56 PM I can only be with you for the first hour. Sorry,
Peter Kafka – MAUI to Everyone 05:59 PM Phone in: 646-749-3129 code: 222583973##
Alan Babcock to Everyone 06:00 PM 1 866 890 8931 support number
Tom to Everyone 06:03 PM New person, thanks for hosting!
eric to Everyone 06:14 PM Hello everyone
George Rovder Arlington VA to Everyone 06:45 PM Feldenkreis, as recommended by Larry Fish https://feldenkrais.com/
Herb Geller to Everyone 06:54 PM pantoprazole
Joe Gallo to Organizer(s) only 06:57 PM Is that in the same family as Prilosec
Frank Fabish Columbus OH to Everyone 07:56 PM Thanks for hearing me. Onward and upward. See you all next week.
Tom to Everyone 08:04 PM Thanks for letting me listen in. I was diagnosed last year after months of back pain, metastatic PC with “innumerable” skeletal tumors. Degarelix worked for a few months but pain returned and PSA back up to 15+, doubling in a month or two. Next appt this week with oncology through UCLA to discuss next treatment options. Mostly focused on reducing pain.
Me to Everyone 08:04 PM Who are you seeing at UCLA?
Tom to Everyone 08:05 PM Dr melody Benjamin, out of the Ventura office
Me to Everyone 08:06 PM Is she a GU med onc?? I think not.
Tom to Everyone 08:06 PM Ok
Pat Martin to Everyone 08:07 PM Thanks for the help and input
Me to Everyone 08:07 PM Go to see Rettig at UCLA Westwood
AnCan can’t say this enough times … nothing gives us more pleasure than when our Peeps meet up. Our survey last year found that some 35% of our participants make new and lasting friendships outside our groups. That’s our gift to you as well as to ourselves!
Late last month two of our sterling Volunteers met up. Capt. Jim Marshall (USAF) headed south from Alexandria, Virginia to spend a month in Melbourne, Florida, home of our Active Surveillance Prostate Cancr Moderator, Garry Tosca. Here’s what Captain Jim had to say about their lunch meeting:
During my visit down in the Melbourne, FL area in November I got to meet up with fellow AnCan Vet, Garry Tosca and his lovely partner, Trish, for lunch on the edge of the Indian River at the Old Fish House. Both of us are Vietnam Vets where my time was spent in Saigon at Tan Son Nhut Air Base in Computer Operations.
Garry did less than two years in the Army with just enough time to be in the thick of fighting in numerous locations in Vietnam. He is my hero earning the National Defense Service Medal (received by all of us just for joining or drafted & affectionately known as the “pizza stain,”), Vietnam Service Medal with a couple of Bronze Stars for fighting in Campaigns, Republic of Vietnam Campaign Medal and the prized Bronze Star.
Bronze Star Medal — a highly respected military decoration given to service members who distinguish themselves while engaged in action against a foreign force
I do understand his most coveted award is the Combat infantry Mens Badge.
The Combat Infantryman Badge (CIB) is a United States Army military decoration. The badge is awarded to infantrymen and Special Forces soldiers in the rank of Colonel and below, who fought in active ground combat while assigned as members of either an Infantry or Special Forces unit of brigade size or smaller at any time after 6 December 1941.
I did learn something I had never thought about concerning VA Disability Ratings associated with Prostate Cancer (PC). With me and the StageIV Metastatic PC plus Vietnam, it is an automatic 100% Permanently Disabled Rating; a real no brainer with a minimum of paperwork needed. Garry is on Active Surveillance now for a number of years, is also considered 100% Disabled even though he is Gleason = 6(3+3).
It now makes sense for when a Vet is undergoing treatment, he/she is rated at 100% until some kind of resolution either one way or the other. Therefore documenting in excruciating detail all that happens during Active Surveillance can be shown as undergoing treatment, actually “continual treatment“. Hopefully he will stay at 100% Temporarily Disabled for the duration even if his PC never goes beyond Gleason 6.
I want to thank Garry & Trish for being such gracious hosts and when I return in the Spring, hopefully we can get caught up on things.
Just a reminder that AnCan now runs a Veterans’ Health Navigation Support Group, attended by both Jim and Garry and expertly moderated by Capt Joe Gallo (USMC). The group includes a vast amount of experience including administrators and physicians who worked in the VA for decades. It can help with everything from ratings and benefits to treatment. We also have folks using TriCare adn Tricare for Life. Sign up to receive a Reminder at https://ancan.org/contact-us/
Now here’s an uplifting pancreatic cancer story for you.
Jay Sandler of Canopy Cancer Collective celebrates almost a decade as a pancreatic cancer survivor. He later went on to be our moderator for our support group.
Read his story at the Hirshberg Foundation about what must have felt like a never-ending treatment journey.
Pancreatic Cancer Awareness Month is over, but there’s still plenty of reason to celebrate stories and celebrate survivors. If you or a loved one happens to also be diagnosed with pancreatic cancer, drop into one of our group meetings. We meet on the 4th Thursday of each month at 8 pm ET / 7 pm CT / 6 pm MT / 5 pm PT in the AnCan Schmier Room.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 21, 2022
HAPPY THANKSGIVING TO ALL -… we have much gratitude at AnCan – especially for the love and support from our participants! All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: What’s the right type of radiation therapy? And you gotta love our live interaction to help Dr. Jack decide! (rd)
Topics Discussed
chemo causes minor BP/heart issues; off again, on again pembro to be resumed; MMR and HRR mutations defined; AnCan advises against self-dosing; bladder Botox and hematuria; starting IHT; GU med onc offers 3 treatment options … AnCan’rs opine; more IHT starting; RT treatment to commence- but is the right type of radiation?; Bayer approves darolutamide support; HT kicks in for another happy Dr. E camper; Herb experiences pain, but is it cancer realted?; are we seeing more or less telemed visits?
Chat Log
Frank Fabish Columbus OH to Everyone 06:02 PM Have my two month follow up and blood draw with my oncologist at the James tomorrow afternoon. Looking for good results.
Dennis McGuire to Everyone 06:05 PM Rick, Like the Background !
Joe Gallo to Organizer(s) only 06:42 PM SHARED Decision making
Me to Everyone 06:59 PM desmopressin – ‘Nocturna’
AL L Ft Lauderdale to Everyone 07:07 PM Just saw the bill for the first Docetaxel infusion. List prices. Docetaxel $4141. Neulasta $46749. Really? Haven’t seen what the approved by Medicare amounts are yet. Total $60000. Neulasta is really that expensive?
Me to Everyone 07:08 PM Yes Al …. and a lot of hospitals won’t give it or use a generic.
Alan Moskowitz to Everyone 07:09 PM nocturna is a brand name for a quick dissolve desmopressin tablet. More expensive and may not be covered by insurance. The generic tablet is very inexpensive.
Aaron Wertlieb DC to Everyone 07:18 PM Thanks guys have a good night
Peter Kafka – MAUI to Everyone 07:20 PM I just looked up my Medicare billing for 2020 which covered my Chemo treatment reimbursements. This was here in Hawaii, but my Nulasta was billed at $19,445. per shot. Medicare paid $2,226.91 and my secondary plan covered $556.73 Strange that you are seeing $60,000 bills. I guess that is why I don’t live in Florida. Correction: I see your Nulasta is only $46,749. But again, mine was only $20,000 in 2020.
Len Sierra to Everyone 07:23 PM Peter, I think he was including the cost of the chemo in addition to the Neulasta.
Me to Everyone 07:21 PM How do you all like the interactive?
Norm Pollock to Everyone 07:22 PM Yes
Len Sierra to Me 07:22 PM Fun!
Frank Fabish Columbus OH to Everyone 07:23 PM like the interactive
Steve Roux, Elk Rapids, MI to Everyone 07:23 PM Interactive is great
James Davidson (Houston) to Everyone 07:24 PM Interactive is engaging and entertaining
jeff wood to Everyone 07:27 PM I have to go early. Happy TG to all
Alan Moskowitz to Everyone 07:28 PM Guys, need to leave now. Happy Thanksgiving to all.
Joel Blanchette Reston, VA to Everyone 07:33 PM I talked with Dr. E today and she said that she had just returned from Canada lecturing on the FDG PET and the PSMA from some research done by the Aussies. Does anyone know where she was in Canada and is it available on You Tube or someplace else?
TonyFig to Everyone 07:42 PM What is the name of the recommended radiation? SDRT?
AL L Ft Lauderdale to Everyone 07:43 PM Thanks to all. I need to leave tonight. Happy T Day!
Jim B to Everyone 07:44 PM SBRT – stereotactic beam radiation therapy
Frank Fabish Columbus OH to Everyone 07:51 PM got to leave guys. Happy Thanksgiving all.
Steve Roux, Elk Rapids, MI to Everyone 07:58 PM Got to get some sleep for early morning EBRT. Have a Happy Thanksgiving all!
Julian Morales – Houston to Everyone 07:58 PM Happy Thanksgiving to ALL!
James Davidson (Houston) to Everyone 07:59 PM Happy Thanksgiving!
Robert G (Colorado) to Everyone 07:59 PM Happy Thanksgiving!
Bill H to Everyone 08:04 PM Happy Thanksgiving to all. GN
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.
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 .
During my visit down in the Melbourne, FL area in November I got to meet up with fellow AnCan Vet, Garry Tosca and his lovely partner, Trish, for lunch on the edge of the Indian River at the Old Fish House. Both of us are Vietnam Vets where my time was spent in Saigon at Tan Son Nhut Air Base in Computer Operations. 
