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
At AnCan, we LOVE friends! And helping you get resources you need to empower you to “Be Your Own Best Advocate!” Here are some great, informative, and FREE resources from our partner CancerCare. Be sure and check them out!
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!
Support comes in many forms, and here at AnCan, we are so blessed to have Hannah Garrison, a fantastic MS activist, moderator for our MS Virtual Support Group, and artist.
In honor of MS Awareness Month (March) we had a phenomenal time with adaptable art of all skill levels. We used paint and old gift cards to create masterpieces. We even had adorable kids join for a family night!
Feel free to create this art project anytime (no matter what community you belong to) with the video below: (Scroll down for supply list)
Supply list:
1. Acrylic paint
2. paper plate or palette
3. old, empty gift card or old credit card – the paint will ruin it, so make sure they know it can’t be usable
4. napkins – lots!! things will get messy
5. paper – any sturdy paper – cardstock, watercolor paper, acrylic paper
6. brush – optional, for mixing colors on your paper plate/ palette
We will be offering more art related support soon, including an AnCan art gallery. If you’d like more information or have any suggestions, please email me at alexa (at) ancan.org!
For information on our peer-led video chat MULTIPLE SCLEROSIS 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.
Special thanks to Myovant Sciences for sponsoring this webinar.