On our second edition of The TALK, a series of webinars addressing how parents and kids of every age speak to each other about their health conditions, we had the pleasure of having the ovarian cancer community share their perspectives with us.
On Wednesday July 29th, with an excellent discussion moderated by Dr. Pamela Munster (co-leader of the esteemed UCSF Center for BRCA Research), and top medical experts in the field Dr. Jocelyn Chapman (Board certified Gynecologic Oncologist at UCSF), and Beth Peshkin MS, CGC (Professor of Oncology and the Director of Genetic Counseling at Georgetown Lombardi Comprehensive Cancer Center).
We were so thrilled to have our own Ovarian Cancer Virtual Support Group moderator Ilana Feuchter (of NOCC) welcome our guests and attendees. Most important of all, we had wonderful family members of all kinds share vulnerable and honest conversations about their own “talks”. Maria Ciesla and her daughter, Alex Cornwell. Ni Guttenfelder, and her sister Leigha. Elena Solomon, and her daughter Liz Solomon. And the McConnell family, with Craig, Ross, and Corey.
There were many laughs, tears, and heartfelt moments. Including great answers to your questions by our experts. We want to thank our co-sponsors Sharsheret, NOCC (National Ovarian Cancer Coalition), FORCE (Facing Our Risk of Cancer Empowered), and UCSF Helen Diller Family Comprehensive Cancer Center.
Watch this incredible webinar, here:
For information on our peer-led video chat OVARIAN 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.
Episode 1 of 3 in Your Prostate Cancer Questions Answered.
In 2018, patients with nonmetastatic castration-resistant prostate cancer (nmCRPC) were watching and waiting. Two years later there are three novel androgen receptor inhibitors available. But more options mean more questions for doctors and for patients. In this first installment of our prostate cancer Answers Now series, we’ll explore these emerging questions around who should use what when, and why. We will also zoom out to give an overview of the disease and current treatment options. This event will be hosted by AnCan Founder Rick Davis and Len Sierra, AnCan Prostate Cancer Moderator. Dr. Eleni Efstathiou from MD Anderson Cancer Center in Texas and Dr. Tom Beer, Chair of Prostate Cancer Research at OSHU.
Join us for our live webinar on Wednesday, October 28th at 8 am PT/11:00 am ET. Get your question answered live. Send your questions ahead of the program to prostate@patientpower.info. If you are unable to register for the event, reach out to us at comments@patientpower.info.
Editor’s Pick: Brain fog is a familiar subject to many who follow our group … today we pick it apart!
Topics Duscussed
Clinical trial ins & outs; lymphedema, edema and acupuncture; PSMA scan availability; germline mutations; colonoscopies and anaesthetic; mangaing progression with spot SBRT; combating brain fog; port installation; SBRT radiation to the gland; PSA nadir; abi, enz and hypertension..
Chat Log
John I (to Everyone): 3:35 PM: Haha, thanks–it’s the sweatshirt for the cold Chicago winter 🙂
John I (to Everyone): 3:37 PM: It’s FANTASTIC right now. Sitting outside because there will be few days (or hours?) left that are warm
John I (to Everyone): 3:38 PM: Nice fall colors too–will probably peak in the next week
Len Sierra (to Everyone): 3:38 PM: I have the sweatshirt, too. Very warm and soft. Nice job, Peter and Jeffrey, his son.
Lou (to Everyone): 3:55 PM: going to conference on ui and ed @7
Peter Kafka (to Everyone): 4:03 PM: I have two sweatshirts in my closet and have to wait until February before the weather is cold enough to wear them here on Maui.
Rusty (to Everyone): 4:39 PM: Complete Fall in NH, peak colors this weekend. Snow in the mountains later this week. Our 8 weeks of summer were nice though.
Editor’s Choice:‘Young’ man with little kids faces liver mets; &, good discussion of current clinical trials.
Topics Discussed
55-yr old man sees cancer metastasize to liver; getting a port; chemo fatigue; switching oncs to a GU specialist; ipilimumab+nivolumab; scans if not PSMA avid; edema explained by lymphedema; current trials discussed for mCRPC; staying the course 2nd time around with docetaxel; consider SBRT before IMRT; abi or enz first; 2nd timne around for PSMA, but where?; use the same lab for your tests; Viewray @ UCLA used for salvage RT; fatigue from RT+HT – exercise!
Chat Log
Carl Forman (to Everyone): 5:09 PM: Shana Tova to our Jewish participants.
Herb Geller (to Everyone): 5:10 PM: Thanks, Carl. L’Shana Tovah to all as well
David Muslin (to Everyone): 5:11 PM: L’Shana Tova guys
AnCan Barniskis Room (to Everyone): 5:22 PM: L’shana tova to all … may you all be well inscribed
Len Sierra (to Everyone): 5:34 PM: Talking to children about a parent’s terminal illness. http://tiny.cc/mssysz
John I (to Everyone): 5:34 PM: Fraz, I remember seeing a story like this a long time ago. A guy recorded answers to all the questions his 6 & 8 year olds would have after he was gone. https://abcn.ws/36DOFj4
John I (to Everyone): 5:34 PM: Definitely
John I (to Everyone): 5:35 PM: I’m not as qualified as you, but happy to help when it gets tough for you
John I (to Everyone): 5:46 PM: The Under 60 group is this Thursday (in 3 days) 7 pm – 8:30 pm EDT
Mark Perloe (to Everyone): 6:28 PM: might Alan be eligible for a 177 Lu clinical trial?
alan moskowitz (to Everyone): 6:44 PM: Mark – I would be reluctant to do that Lu trial – I think one needs to have exhausted other conventional treatments first. In my mind it is too experimental in nature – but it is on my Radar.
Carl Forman (to Everyone): 6:54 PM: Global Knowledge Exchange Webinar: NEXT GENERATION PSMA 6 speakers + Q&A; beta, alpha, auger + more Register here: http://bit.ly/nextgenpsma Proudly hosted by @pros_tic @PCF_Science Oct 7 12PM PT 3PM ET
Mark Perloe (to Everyone): 7:06 PM: consider ViewRay SBRT 5 days with no fiducials or spaceOAR. See ViewRay.com. I finished today.
Mark Perloe (to Everyone): 7:09 PM: Thanks Rick. such good advice.
Editor’s Pick: Staging your prostate cancer BEFORE treatment ….. and of course – exercise, exercise, exercise!!!
Topics Discussed
Stage your disease before starting recurrence treatment; ADA and ADT; staging your disese before starting any treatment!; PSMA scan vs color doppler; radiating pelvic girdle vs systemic treatment; abscopal effect from RT; persisiting with olaprib; doc says exercise is essential; MyVictory coming soon; PSMA scan in Taiwan; metformin for prostate cancer; foot and hand syndrome from chemo; how long does it take for testosterone to return after ADT?
Chat Log
Dell Jensen (to Everyone): 5:18 PM: I concur. I would wait on the radiation till you are fully healed and have good urinary control
Dell Jensen (to Everyone): 5:19 PM: ADT is necessary to control the cancer.
Peter Kafka (to Everyone): 5:19 PM: What kind of doctor is guiding this gentleman?
Mark Perloe (to Everyone): 5:20 PM: My UCLA med onc suggests that the studies on ADT are primarily with EBRT. There are limited studies on ADT with SBRT. I was told that six months may be sufficient.
Mark Perloe (to Everyone): 5:21 PM: I’d advise a PET Scan with DCFPYL or GA68 PSMA prior to doing a treatment plan.
Peter Kafka (to Everyone): 5:22 PM: Northern or Southern Indiana? How far from Chicago? Probably should do genetic testing and anything else that can be done safely in this Covid-19 climate. Should be under the care of a good GU med onc before embarking on ADT
Dell Jensen (to Everyone): 5:24 PM: Very good doctors at Northwestern
Mark Perloe (to Everyone): 5:40 PM: Is anyone attending PCRI online conference this Friday?
Dell Jensen (to Everyone): 5:47 PM: I wish I could but I have training this weekend
John I. (to Everyone): 6:38 PM: Thanks Mark P. I’ve been searching for a good set of exercises like that
AnCan- rick (to Everyone): 6:40 PM: ….. https://www.radpowerbikes.com/
Carl Forman (Private): 6:47 PM: you mentioned there is possibly someone who may be able to get me a discount for radpowerbikes?
Wang Gao Shan (to Everyone): 6:54 PM: Both UCLA & Taiwan asked if I am currently taking Metformin and if stop taking it before the PSMA scan. Should I wait to start taking the Metformin until I have had the GA68 PSMA scan?
Mark Perloe (to Everyone): 6:59 PM: With MRI’s or any injectable dye, you need to be off metformin for 3-4 days after. You can stop a day or so before or on the day of treatment. Please follow your docs advice. It’s best when you restart that you build up slowly again and not back to full level.
Peter Kafka: 7:01 PM: Got to sign off. My question came to me at 2 am this morning out of working with 2 guys stuck with Kaiser. The question is: Do second opinions within the Kaiser system work or is there too much “company” loyalty within the system?
