We also learned recently that in 2021 almost 15,000 visitors have watched 258,000 minutes in viewing time on our YouTube Channel – THANK YOU!
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/
Editor’s Pick: We all know this group is for men living with advanced prostate cancer. It’s also for men lviing with advanced bladder cancer …. listen in to find out why! (rd)
Topics Discussed
PROMISE may be the ticket; advanced bladder cancer may not be so different from PCa; disease recurs after 20 years; Provenge on the Islands; dexamethasone vs prednisone with abi; dex and heart rate; nocturia and how to deal with it; Agent Orange and otehr VA issues; BAT experience; entering hospice; GU Med Onc recommends RT
Chat Log
Herb Geller (to Everyone): 4:10 PM: On a Mac, the chats are in Documents>GoToMeeting Chats
Peter Kafka (to Everyone): 4:13 PM: psma scan time
Peter Kafka (to Everyone): 4:15 PM: Oliver Sator at Tulane would be a good option.
Carl Forman (to Everyone): 4:18 PM: I had tried to get a telemed appt with Sator for a second opinion, but was told he only sees new patients in person. Didn’t want to get on a plane to see him.
John Antonucci (to Everyone): 4:20 PM: HIya Jake
Jake Hannam (to Everyone): 4:20 PM: pylarify
Alan Moskowitz (to Everyone): 4:22 PM: Could he have had C 11 Choline scan?
Joe Gallo (to Everyone): 4:27 PM: Invitae
Jake Hannam (to Everyone): 4:28 PM: I might have some input on oxycodone. I’m an old pro.
Julian Morales-Houston (to Everyone): 4:30 PM: I got the Color this week?
Bill Lewis (to Everyone): 4:34 PM: I’ve done more than 8000 self catheterizations. lewis.bill@gmail.com
AnCan – rick (to Everyone): 4:45 PM: You ain’t going to hear this type of stuff anywhere else, Gents!!!
Alan Moskowitz (to Everyone): 4:48 PM: Avoid any gas causing foods –
Mark Horn (to Everyone): 4:53 PM: Many thanks everyone
Bill Lewis (to Everyone): 5:02 PM: To Steve: my oncologist would give you a special version of Chemo, including Taxotere and 2 other drugs right away. Love to talk.
Jake Hannam (to Everyone): 5:02 PM: axumin PSMA Pet
Vic (to Everyone): 5:05 PM: from the PEACE 1 study/trial and be sure to talk with the GU MO
Erwin Zoch (to Everyone): 5:10 PM: I suggest that unfamiliar acronyms be defined when 1st used for newcomers e.g,, SBRT is Stereotactic Body Radiation Therapy (or RadioTherapy).
Bob Smith (to Everyone): 5:12 PM: Regarding Steve’s comment on head bump, is it common for concussions to lead to PCa brain or other?
Herb Geller (to Everyone): 5:13 PM: I have not seen any suggestion that a concussion can promote a PC metastasis
Peter Kafka (to Everyone): 5:13 PM: I have never heard of incidents like this leading to cancer metastasis. But I am no expert.
AnCan – rick (to Everyone): 5:16 PM: Bob – not sure there is any correlation that I have heard of.PCa spreads without any interference from outside forces – unfortunately.
Steve Barber (to Everyone): 5:22 PM: My imaginatve, “pet” theory is that 35 years of cell phone use/radiation conpromised the integrity of bone in my skull on the right side.
Vic (to Everyone): 5:24 PM: what study supports the abi with meals?
Jake Hannam (to Organizer(s) Only): 5:30 PM: bone scans are notoriously insensitive
AnCan – rick (to Everyone): 5:31 PM: Vic – we have articles around abi with food. But only re. reducing the dose with food.
Jim Marshall, Alexandria, VA (to Everyone): 5:41 PM: Jiimmy – Count your blessings you ARE. Think of what happens if you are not. Jim Marshall
Joel Blanchette, Reston VA (to Everyone): 5:41 PM: I am on the exact schedule as Jimmy and Herb.
Julian Morales-Houston (to Everyone): 5:42 PM: This is my schedule to a T!
Stan Friedman (to Everyone): 5:43 PM: I have obstructive sleep apnea and the therapy reduces the number of times I get up to one, maybe two.
Vic (to Everyone): 5:44 PM: I’ve had some success just ignoring the urge to go an being able to fall back to sleep without leaking
AnCan – rick (to Everyone): 5:44 PM: Myrbetriq
Bill Lewis (to Everyone): 5:47 PM: Food added to full-dose Zytiga: PMID 25777155; DOI: 10.1038/pcan.2015.7 — Bill Lewis
Steve Barber (to Everyone): 5:47 PM: Thanks to all! At this time I must get off the meeting. I look forward to another visit and appreciate all the input today. Steve
AnCan – rick (to Bill Lewis): 5:49 PM: Tx Bill – we will definitely take a look at the refernce. I am sure Len and Herb are on it.
Len Sierra (to Organizer(s) Only): 5:51 PM: I just did. 2015 study with 41 patients. They claim 16% better response on food with full dose. No increase in tox. Hard to believe.
Len Sierra (to Organizer(s) Only): 5:53 PM: I’d need to read the full paper. And see if anyone was citing this study.
Herb Geller (Private): 5:53 PM: IT is a small retrospective study from 2015, They say that abi with food lowered T, so there must have been an issue with their initial therapy.
AnCan – rick (to Organizer(s) Only): 5:53 PM: Maybe you can look closer ….. But even so, changing dose like that must inc. medical advice. Did these men fail abi then up the dose.
Herb Geller (to Organizer(s) Only): 5:54 PM: T is a small retrospective study from 2015, They say that abi with food lowered T, so there must have been an issue with their initial therapy. It is totally flawed
Peter Kafka (to Everyone): 5:55 PM: Don’t forget the water quality at Fort Bragg
Jake Hannam (to Everyone): 5:57 PM: Military water quality is notoriously bad and still being EPA-remediated across the country
Herb Geller (to Everyone): 5:59 PM: I looked at the abstract of the study. Thay say that abi with food caused a decline in T levels as well as PSA in a small percent of men. The fact that T declined suggests they were undertreated before switching to food. T should be undetectable with any effective dose of abi
Joe Gallo (to Everyone): 6:01 PM: Veterans Population ~19,000,000
Veterans in VHA System ~9,000,000
Veterans in VHA with Prostate Cancer 488,984
Veterans in VHA with Metastatic Prostate Cancer 16,282
Veterans diagnosed with Prostate Cancer each year ~15,000
Cumulative (10year) Cost of High Risk PCa Patient2
~$200,000
Total Economic Burden for High-Risk Patients in VHA ~$3,256,400,000
Vic (to Everyone): 6:02 PM: Is a vet rep needed for St. Louis, MO.? If so, who should be contacted?
Joe Gallo (to Everyone): 6:03 PM: Vic and anyone interested let me know and I will forward the info. joeg@ancan.org
Vic (to Everyone): 6:04 PM: please do Joe, thanks
Vic (to Everyone): 6:14 PM: the nasa astronauts used a penis prosthesis for urinating, perhaps that would be available and helpful for you Jake
Erwin Zoch (to Everyone): 6:15 PM: Thanks to all of you for this amazing information! Thanks to Jay for encouraging me to join this group. I hope to be with you again soon.
Jay Mills (to Everyone): 6:16 PM: Best of luck tomorrow Erwin with your appointment.
Peter Monaco (to Organizer(s) Only): 6:18 PM: Need to sign off gents! I will handle all recordings this week. Best regards and Happy New Year!
Jake Hannam (to Organizer(s) Only): 6:19 PM: you too peter and thanks for your help
We also learned recently that in 2021 almost 15,000 visitors have watched 258,000 minutes in viewing time on our YouTube Channel – THANK YOU!
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/
Editor’s Pick:This week, it’s a theme – men who are clearly their own best advocate and men who just ain’t….. and don’t let a handful of difficult customers deter you (rd)
Topics Discussed
Foundation Medicine’s Next Generation Sequencing liquid biopsy ; ‘Be You Own Best Advocate; looking to bike like Dad for another 30 yrs ….at 59 ; get best information to make intial treatment decision; everone else responsible for this man’s PCa except him; when to intorduce 2nd line anti-androgen and which one; and more … abi vs enz; finishing salvage RT; let’s talk about soy; explaining RT ligands/radionuclides; yup – that pain in the neck is PCa; cabazitaxel – hopefully the plateau before the drop; holding the course with pembro despite no result; blood pressure issues; Lu177 PSMA’s a winner for this v. grateful man; palliative care, hospice or what?
Chat Log
Joe Gallo (Private): 6:08 PM: What about SelectMDx?
AnCan – rick (to Joe Gallo): 6:09 PM: ???? – explain Joe
Joe Gallo (Private): 6:11 PM: Urine based test that confirmed the probability that I had greater than Gleason 7. Proceeded to TP. A favorite of E David Crawford
ALFRED LATIMER (Private): 6:12 PM: Rick. I forget. Who does the liquid biosy?
Jake Hannam (to Everyone): 6:13 PM: ty carl – i do have a brief update but no news
Joe Gallo (Private): 6:13 PM: Measures 2 mRNA cancer related biomarkers
AnCan – rick (to ALFRED LATIMER): 6:14 PM: Foundation Medicine
AnCan – rick (to Organizer(s) Only): 6:19 PM: He is high risk with PSA 22 but borderline
Jimmy Greenfield (Private): 6:19 PM: Thirty years! I like his optimism
Len Sierra (to Everyone): 6:19 PM: Crude incidence of individual secondary cancers ranged from 0.2% to 2.3% for patients treated with external beam radiotherapy, 0.1% to 2.1% for patients treated with brachytherapy, 0.2% to 1.7% for patients treated with brachytherapy and external beam boost, and 0.3% to 2.3% for patients not exposed to radiotherapy BMJ. 2016; 352: i851. Second malignancies after radiotherapy for prostate cancer: systematic review and meta-analysis
Warren in Edmonton (to Everyone): 6:24 PM: If Len would like to chat with me after the meeting please let me know, I can offer a great deal of information on his question
Peter Kafka (to Organizer(s) Only): 6:24 PM: He should get a second opinion on his biopsy with this one
Joe Gallo (to Everyone): 6:26 PM: Epstein Consult https://hopkinsconsults.org Eric. Just ask you urologist to send. You don’t have to track down your slides
Eric Madison, WI. (to Everyone): 6:35 PM: Have a great night, guys!
Joe Gallo (to Organizer(s) Only): 6:35 PM: He will get a good discussion when he chats with Epstein
Pat Martin (to Everyone): 6:36 PM: I was dxed and had at least 6 weeks before sugery. They gave me casodex and Lupron
Warren in Edmonton (to Everyone): 7:24 PM: I have a small emergency at home and I must leave the meeting. Merry Christmas to all.
Len Sierra (to Everyone): 7:45 PM: Soy might lower the risk of other cancers
Studies among prostate cancer survivors indicate that eating soy foods may lower PSA levels. Among men in various stages of prostate cancer, those who consumed soy milk or isolated soy isoflavones saw their PSA levels rise at a slower rate. Source for my post: www.nutritionfacts.org
Alan Moskowitz (to Everyone): 7:48 PM: Regarding Enza vs Abi – my MO at MSK said “As for abi vs enzalutamide, as we discussed, never been compared head to head though my feeling is enzalutamide is a bit more active. Though they work differently, both have very high response rates up front but much lower when the other has already been used. In “switching” trials, enza has higher response rate after abi than abi after enza. To me, this doesn’t mean starting with abi is better. It’s just consistent with enza being the more active drug (easier to become abi resistant than enza resistant). But overall, it’s a tossup and I give abi to more elderly and frail and enza to younger and healthier. Essentially no difference between enzalutamide and apalutamide.”
Alan Moskowitz (to Everyone): 7:49 PM: I have to leave, thanks for the guidance.
AnCan – rick (to Everyone): 7:49 PM: Alan – this NOT about head-to-head; it’s about sequencing
John Antonucci (to Everyone): 8:02 PM: will they give a 2nd booster?
Len Sierra (to Everyone): 8:04 PM: They will give a second booster to immunocompromised folks.
Cal Van Zee (to Everyone): 8:12 PM: My blood pressure peaked at 200/100 on prednisone on 50mg Losartan w/o diruetic. After changing to dexamethasone, BP dropped to normal and I stopped Losartan.
Cal Van Zee (to Everyone): 8:17 PM: 120/80 or below: for me it was the Prednisone, not the AbiI’m still on Abi now but my PSA is rising now at 19. Most likely starting chemo first week of Jan
Jerry Pelfrey (to Everyone): 8:19 PM: Sorry I have to leave. Have a Great Christmas!
Julian Morales-Houston (to Everyone): 8:24 PM: Merry Christmas to all!
Stan Friedman (to Everyone): 8:24 PM: Merry Christmas!
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
On June 23rd, we had the pleasure of having Stephanie Weisman!
Stephanie is Artistic Director and Founder of The Marsh, and has been personally touched by her own and loved ones’ cancer experiences.
June’s Solo Arts Heal was the grand premiere of “Stephanie’s Tidbits on Living While Maybe Dying“. This solo performance short is focused on Cancer Victim/Survivor PTSD (post-traumatic stress disorder). It explores what recovery means when the outlook is unpredictable, And how one copes, both at survival and creative levels, with the stress of cancer, its treatment and moving beyond.
Watch this incredible performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
Our Advisory Board member Renata Louwers wrote an incredible, honest, and powerful piece for Intima: A Journal of Narrative Medicine titled “We Can Offer You Some Helpful Resources”. She shares her experience that sadly, many caregivers will find relatable.
Teetering on the cusp of widowhood at 45, I realized my intensity had sent the hospital social worker scurrying away. Ours had been a tense and circular conversation littered with euphemisms (by her) and rage (by me).
She had initiated the conversation by saying she understood how tough “the journey” had been. Then she continued on about the “discharge protocols.”
“I can’t take him home,” I protested. “I can’t care for him at home.”
As if to prove that I actually could care for him at home, she noted “the care team has already signed off” on his discharge, and she was just awaiting the paperwork. The team would, she assured me, do all they could to “support this transition.”
Wendy had a great blog post to share from our friends at Cure. Titled “The Cancer ‘Bombshell’: 8 Tips for Devoted Caregivers“. With great practical advice and commentary, we’re sure you will find this incredibly helpful. My caregiver, my mom Lisa, will especially appreciate tip number 8. Hint: it’s about her favorite food.
For information on our peer-led video chat CANCER CAREGIVERS VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page
