On May 5th, Dr. Samuel Washington III (UCSF Assistant Professor of Urology and Goldberg-Benioff Endowed Professorship in Cancer Biology) spoke at our Active Surveillance Virtual Support Group with a presentation titled “How Does Where You Live Impact Active Surveillance?”
He shared his research on regional variations in the use of active surveillance, showing that men with identical diagnoses get treated differently in different communities. He also answered some questions related to the safety of AS for African American men, anxiety issues in men on AS, and other topics.
We want to thank Dr. Washington for answering questions!
Watch here:
To view the slides from this presentation, click here.
For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER 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.
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.”
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.
Aloha, friends! We have some wonderful thoughts once again from our Board Chair, moderator, and most important, our dear friend Peter Kafka. We love you, Peter!
THE LEARNING CURVE
Yesterday I made the leap and upgraded my smart phone from my old Samsung android which was not functioning or charging very well to a new I-phone. I was warned that there would be a learning curve to navigate, and I feel I am up for the challenge. Of course, I have mentors close at hand like my son and daughter-in-law and grandchildren, but their fingers fly so fast over the keys and apps that my brain just can’t keep up and I get lost. I suspect you know the feeling well.
I bring this experience up because it reminds me of the steep learning curve that most of us face when diagnosed with prostate cancer at any level. There is a hell of a lot to learn to say the least! Our AnCan motto for our support groups is; “Be Your Own Best Advocate”. This admonition can be quite an ambitious goal for many of us. I noticed my own over eager attempt to “educate” a recently diagnosed man who found his way to my phone number the other day, not unlike my grand daughter’s attempt to furiously try to teach me the secrets of all the apps on my new phone. How quickly the mind can zone out.
Then there are the numerous inherent “handicaps” (if that is still a politically correct choice of words) that we face including;
Age: Prostate cancer seems to strike most of us in our 60’s when our mental capacity and acumen is not in its prime. (Go ahead and say; “speak for yourself!”, just saying….
Medical Terminology: Few if any of us are trained as medical professionals and acquiring understanding in the field of cancer can be quite daunting.
Advancements: The field of medicine is changing and progressing rapidly. “Warp Speed” is no longer a science fiction term.
Brain Fog: The treatments that many of us endure certainly don’t help the cause.
Add your own: Be my guest…
If you have attended any of our live online AnCan support group meetings you will have noticed that many of us are “regulars”. We are not GROUPIES following bands like The Grateful Dead around the country, but rather just guys trying to wrap our heads around this strange disease and better understand what our options are going forward. The light doesn’t come on with a flip of the switch, at least that has been my experience.
For information on our peer-led video chat PROSTATE CANCER VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
On March 24th, we had the pleasure of having our very first performer, Jackson Nogahl! He celebrated his ten-year anniversary with prostate cancer on Valentine’s Day 2021. He has been finding humor in his experiences living with this condition as he writes his memoir War and Pee.
He gave a virtual performance of The Rain Delay:
Chronicling his first day back to work after prostate surgery, this work weaves together the lessons of a 1990s skateboarder, tallboy beers, Clydesdale horses, a magic trick, the power of prayer, the most beautiful woman in the office, and above all else, Mother Nature.
Afterwards, Rick Davis and Jackson discussed the importance of connectivity, especially for those living with serious diseases and conditions.
Watch this hilarious, and thought provoking performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
Have you checked out our page “All the Faces of AnCan” lately? We are always growing, and you might see some new faces! While we’ve discussed Dr. Herbert Geller (researcher and AnCan Advisory Board Member) previously on the blog, we have a special treat today. Dr. Geller was part of an esteemed panel explaining the science behind mRNA Covid-19 vaccines with CureTalks.
I find this description of what mRNA means and brief explanation from CureTalks to be extremely helpful.
Messenger RNA vaccines, also called mRNA vaccines, are some of the first COVID-19 vaccines authorized for use in the United States. mRNA vaccines are a new type of vaccine to protect against infectious diseases. They teach the cells of our body to make a protein that triggers an immune response. This immune response leads to the production of antibodies which protects us from getting infected if the real virus enters our body.
Be sure to check out this informative presentation, here!
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
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!
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.
Special thanks to Myovant Sciences for sponsoring this webinar.