Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, May 11, 2021
Editor’s Pick:Great discussions this week – trials vs chemo, absurdly high T on LHRH + abi, sweet smelling urine – but the prize goes to Being Your Own Best Advocate … someone’s listeing to us!(rd)
Topics Discussed
Another trial or finally try the the SoC – chemo?; cyclophosphamide; PSA doubling times; post-AUS surgery – and more incontinence issues; testosterone returns; Dr. Morgans on the move … and Dr. Antonarakis!; brachy+IMGT+HT is the gold standard; abiraterone and liver effects suggests switch to darolutamide and DUDE program; hormone therapy prematurely ages us; when it comes to Axumin and MSKCC, Be Your Own Best Advocate; what’s that sweet urine smell – pre-diabetes?; neuropathy; Frank finishes chemo; Testosterone supplementation; T of 750ng/ml on ADT + abi?? – sure that’s your sample?
Chat Log
Jerry Pelfrey (to Organizer(s) Only): 3:06 PM: Rick what is the name of AnCan on facebook? I have looked and can not find it anywhere.
Herb Geller (to Everyone): 3:30 PM: Doubling time is the time it takes for PSA level to double. So if it goes from 8 to 16 in one month, then doubling time is a month.
Ravi (to Organizer(s) Only): 3:48 PM: so if T varies so much, what is the best time to test?
AnCan Barniskis Room (to Organizer(s) Only): 3:49 PM: not sure Ravi …… but maybe best to test always at the same time???
Herb Geller (to Everyone): 3:59 PM: Van Veldhuizen at Rochester
AnCan Barniskis Room (to Peter Kafka): 4:08 PM: switch out of abi to enz
Joe Murgia (to Everyone): 4:45 PM: After about 18 months on bicalutamide my A1c went up to 7.8. I’ve been on metformin to control my blood sugar for almost 3 months and I’ll be getting an A1c in 2 weeks. My AM fasting blood sugars have improved. Any help it may give in fighting the PCa would be welcome.
Ravi (to Organizer(s) Only): 4:46 PM: Thanks, Joe
Joe Gallo (to Everyone): 4:47 PM: Get the basic Lipid (panel current levels)as well as A1C (3 months average). Both are valuable.
AnCan Barniskis Room (to Everyone): 4:47 PM: From Ravi …. Thanks, Joe
John Ivory (to Everyone): 4:57 PM: I’ve got to run to another Zoom. Good to see everyone! Aloha, Peter!
Jeff Marchi (to Everyone): 4:59 PM: took biclutamide for a year but A1C nverwent above 5. I keep weight down, weigh daily. I almost never eat sugar, and am very careful with carbohydrates, that really helped. last test was 5.3. have to really monitor diet. never above 5.6
Pat Martin (to Everyone): 5:02 PM: I appreciate this group…300 years of experience and still has a sense of humor.
Herb Geller (to Everyone): 5:07 PM: I gotta go, guys. Dinner’s on the table. Sorry.
Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, May 03, 2021
Editor’s Pick: An 80 yr old man tolerating docetaxel is an inspiration to all. Later on, practically ,do you stop treatment to allow PSA rise for screening purposes? (rd)
Topics Discussed
80+ yr old man undergoes chemo, but rash stops it; reluctant patient faces recurrence; Grade 4 Radiation Cystitis; more recurrence w. pelvic girdle RT; NGS reveals MSI-H; getting an Axumin scan thru MSKCC; In Memory of Scott Hogan; ARV110 trial fails BRCA2 patient; swollen legs leads to coming off abi; melanoma Dx to add to PCa; continuing Tx vs allowing PSA rise to see source of recurrence; bowel and bladder maintenance during salvage RT
Chat Log \
John Ivory (Private): 5:22 PM: https://www.dignityhealth.org/ourdoctors/1699772210-russell-gollard
Carlos Huerta (to Everyone): 5:25 PM: Extravasation is when a medication gets out of the vein and under your skin.
Jake Hannam (to Everyone): 5:26 PM: Extravasation is the leakage of a fluid out of its container into the surrounding area, especially blood or blood cells from vessels. In the case of inflammation, it refers to the movement of white blood cells from the capillaries to the tissues surrounding them (leukocyte extravasation, also known as diapedesis). Extravasation injury is defined as the damage caused by the efflux of solutions from a vessel into surrounding tissue spaces during intravenous infusion. The damage can extend to involve nerves, tendons, and joints and can continue for months after the initial insult.
Bruce Bocian (to Everyone): 5:37 PM: Try lavender oil
Eileen Murphy (to Everyone): 5:37 PM: How about Sarna lotion with menthol or Aveeno products?
Bruce Bocian (to Everyone): 5:38 PM: I got the lavender oil tip from the essential oil book
Bob McHugh (to Everyone): 5:57 PM: A shrink or social worker for this guy?
Herb Geller (to Organizer(s) Only): 6:03 PM: I just searched his hospital and there are no GU oncologists
William Franklin (to Everyone): 6:27 PM: I don’t want to take up time we can use to talk to you guys so I’ll put my plug in here. If you feel like ANCAN has helped you and you’d like to say something nice about us, please hop over to greatnonprofits.org, search for ANCAN, and make a comment. We would greatly appreciate it.
Rick Davis (to Everyone): 6:31 PM: You can go ot our website and just click on Testimonials too
Bruce Bocian (to Everyone): 6:42 PM: Bill, just posted my review!
Frank Fabish (to Everyone): 7:15 PM: need to sign off. Thank you all.
Carlos Huerta (to Everyone): 7:17 PM: Dont forget the old standard. Castor Oil.
Joe Gallo (to Everyone): 7:20 PM: Senakot is brand of Sena
Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, Apr 27, 2021
Editor’s Pick:The lengthy discussion about the benefits of introducing a 2nd line anti-androgen therapy is worth a listen! (rd)
Topics Discussed
PSMA scan available at U of Michigan; very small 4+4 daignosis is challenging; starting cyclophosphamide; benefits of a 2nd line anti-androgen; intermittent hormone therapy; clincal trial results vs individual response; 3rd party advice just doesn’t work!; chemo side effects inc. dry eye : repeat NGS sequencing after 18 mo.; 4+5 treatment plan after focal recurrence; Space Oar
Chat Log
Bruce Bocian (to Everyone): 3:43 PM: James Pool, Jr. Clinical Subjects Coordinator, University of Michigan Health System, 1500 E. Medical Center Drive CVC 5583 Box 5868 Ann Arbor, MI 48109 Phone: (734) 615-7391 Fax: (734) 615-1435 Email: jampool@med.umich.edu Pager: 5425
Rick Davis (to Everyone): 3:43 PM: Tx Bruce
Rick Davis (to Everyone): 3:47 PM: joeg@ancan.org Joe Gallo
Rick Davis (to Herb Geller): 4:13 PM: Herb – this is in your wheelhouse. The trial is not ‘epidemiologocal’ per se??
Herb Geller (Private): 4:15 PM: The trials were not epidemiological they were randomized
Rick Davis (to Everyone): 4:18 PM: Here’s the link for Thursday’s Larry Fong webinar on cancer immunotherapy: https://bit.ly/3thuPmq
Pat Martin (to Everyone): 4:23 PM: What kind of Gleason score was he DXed as? Sorry I was a little slow. Story of my life.
Bruce Bocian (to Everyone): 4:26 PM: Bring him on a call with you next time!!!!
Ravi (to Everyone): 4:28 PM: How do you decide you need a medical oncologist in addition to a radiation onco
Bill Franklin (to Organizer(s) Only): 4:28 PM: Anyone on the call who used Hydrogel or the SpaceOAR for radiation?
Herb Geller (to Everyone): 4:29 PM: If you have disease that is systemic, then the appropriate person is a medical oncologist. An RO would be for localized lesions only.
Bruce Bocian (to Everyone): 4:33 PM: Invite him over for a beer
Mike Yorke – Florida (to Everyone): 4:56 PM: https://www.cancercenter.com/treatment-options/radiation-therapy/external-beam-radiation
ALFRED LATIMER (Private): 4:59 PM: Looked it up. Most recent test was Guardant a year ago. positive BRAC2 Ordered by Dr. Scholz. Dr L had that test result and other earlier ones
Rick Davis (to ALFRED LATIMER): 5:10 PM: Tx for info ….. you are doing the right thing
On April 29th, we had the utmost pleasure of having the highly esteemed Dr. Lawrence Fong (Efim Guzik Distinguished Professor in Cancer Biology, UCSF. Leader, Cancer Immunotherapy Program, and Co-Leader, Cancer Immunology & Immunotherapy Program, UCSF Helen Diller Family Comprehensive Cancer Center) lead a presentation about immunotherapy for prostate cancer, from active surveillance to advanced disease.
What is immunotherapy?
“Our immune system is designed to defend us from foreign attacks, such as viruses and bacteria. Immunotherapy for cancer takes advantage of the immune system to kill cancer cells by directing immune cells to recognize cancer cells by specific proteins on their surface.”
We want to sincerely thank Dr. Fong for the excellent presentation and education he provided!
Watch this fascinating presentation here:
Special thanks to Myovant Sciences for sponsoring this webinar.
Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, Apr 19, 2021
Editor’s Choice: Lively discussion on mental health brought on by treatment, especially in the Chat. And later on, hot & cold tumors (rd)
Topics Discussed
Recurrence 5 years after RP; recurrence after brachy + IMRT; Provenge; Caregiver discusses depression and anxiety; prostate in teh bladdernech impacts RT choice; 2nd opinion from Dr. Morgans may change treatment; Xgeva dosing; hot vs cold tumors impact immunotherapy; end of chemo in sight; Lu177 PSMA working; cyclophosphamide; HT holiday appears over
Chat Log
Bruce Bocian (Private): 5:04 PM: Wearing my new T-shirt tonight!
Rick Davis (to Bruce Bocian): 5:06 PM: I see …. nice job! Give it a plug …..
Bruce Bocian (Private): 5:06 PM: I did before you came on.
Len Sierra (to Everyone): 5:26 PM: Antonarakis and Denmeade
Jake Hannam (to Organizer(s) Only): 5:29 PM: CT and bone scan will probably be redundant if he can get the PET/CT approved
Pat Martin (to Everyone): 5:42 PM: Good night, all. See you next week
Jeff Marchi (to Everyone): 5:45 PM: no CT or bone scan
Alan Dibble (to Everyone): 5:46 PM: Alan does not wish to ask how everyone deals with the emotional aspect of this disease. He had prostate removed, radiation therapy and now on chemo, plus injections of eligard. (Cancer spread to hips and femur after 1 year after radiation).. He goes through much anxiety and depressions. He is 69 and was diagnosed at 56 years of age. He does not wish to speak. I’m getting involved on his behalf. I’m his wife of 20 years.
Jake Hannam (to Organizer(s) Only): 5:50 PM: Alan may wish to join Speaking Freely
Jake Hannam (to Everyone): 5:56 PM: Venlafaxine is used to treat depression. It may improve your mood and energy level, and may help restore your interest in daily living. Venlafaxine is known as a serotonin-norepinephrine reuptake inhibitor (SNRI).
Tad (to Everyone): 5:57 PM: venlafaxine = Effexor (er)
John Ivory (to Everyone): 5:57 PM: Many people use the brand name for venlafaxine, which is Effexor XR
Rick Davis (to Everyone): 6:00 PM: Let’s not push venlafaxine – we are not expert enough to do that! We have expertise in PCa – we don’t have expertise in mental health. And we know better how men respond to the PCa drugs.
Tad (to Everyone): 6:07 PM: Ok….. all I meant. isthat I have experience in mental health
John Ivory (to Everyone): 6:08 PM: Are you a physician or a therapist, Tad?
Tad (to Everyone): 6:08 PM: A lifetime of personal experience. Are there physicians here for prostate? I’m just offering help like others are
Rick Davis (to Everyone): 6:09 PM: an SSRI can effect one person well and not another. They may need an SNRI.
Tad (to Everyone): 6:10 PM: yep or maoi……or I had shock treatments, etc etc etc. just like there are generalities for prostate, there are generalities with mental….general places to start. Bipolar type 2 since 1988. Been in psych hospitals many times. Electric shock treatments. Every med there is. Best dr’s in the country. This cancer stuf has been. awalk in the park compared to having. alife with. a major mental illness. Haven’t been back here for over a year. Finally was able to get back here tonight…..but this makes me depressed. So I’ll leave. Have a nice night.
Dennis McGuire (Private): 6:24 PM: Hi Rick, Is Dr. Morgans leaving Northwestern ? Heard the end of that conversation. Thanks
Rick Davis (to Dennis McGuire): 6:24 PM: Yup – early July. She’s going to Dana-Farber.
Dennis McGuire (Private): 6:26 PM: Sorry to hear that. Great hire by Dana-Farber ! She is a Superstar. I remember she has a history with Dana-Farber in her earlier days
Rick Davis (to Everyone): 6:36 PM: https://www.fiercebiotech.com/research/epizyme-s-ezh2-blocker-boosts-immuno-oncology-response-prostate-cancer-models Tazverik
Vincent Wilmot (to Everyone): 6:38 PM: Thanks all. Have to jump off now. Will stay in touch.
Jake Hannam (to Everyone): 6:38 PM: Mark your calendars for what AnCan expects to be a humdinger of a webinar on Thursday, April 29 at 8 pm Eastern. Advisory Board Member and Co-Director of the Parker Institute for Cancer Immunotherapy at UCSF, Dr. Larry Fong, will answer “Will Immunotherapy Change Your Prostate Cancer Treatment?” . Register at https://bit.ly/3thuPmq to learn how Superman came to visit Larry!
Ken (to Everyone): 6:41 PM: Got to go… pilots telling me turn off electronics
Jake Hannam (to Everyone): 6:42 PM: Sorry. Can’t attach the flier. See our Facebook page: https://www.facebook.com/answercancer/photos/a.1872701729640708/2908943646016506/
Bill Franklin (to Organizer(s) Only): 6:43 PM: I’ve got to drop guys. Need to help my son finish up a little bit of homework so he can get to bed at a reasonable time. Take care all.
Jake Hannam (to Everyone): 6:58 PM: dexamethasone (1 mg/day in the evening) with cyclophosphamide (50 mg/day in the morning). Zofran
Ted Healy (to Everyone): 7:02 PM: Got to go folks, thank you all!
Special thanks to Myovant Sciences for sponsoring this webinar.