Ritchie Johnson is in the dictionary for “turning pain into purpose“. She founded the Chris “CJ” Johnson Foundation in honor of her son Chris, with the goal of ending Renal Medullary Carcinoma. We are so humbled to have her as lead moderator for the RMC virtual support group.
It’s no surprise that Ritchie is very popular in the Kidney Cancer community, and is only getting more popular! She was invited to be on Good Morning America’s GMA3 to share her story and how she is actively helping the RMC community.
We’re also pleased to have Ritchie as a panelist for our upcoming webinar “Advocating for Rare Diseases” on June 30th. She’ll discuss her own advocacy journey, and you’ll hear from other amazing members of the Rare Disease community as well. (click image for pdf)
For information on our peer-led video chat RENAL MEDULLARY CARCINOMA 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.
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! It just so happens to be the 4th Wednesday today, so be sure to check out a can’t miss SAH with The Marsh founder, Stephanie Weisman TONIGHT at 7:30 PT!
On May 26th, we had the pleasure of having Jimmy Greenfield!
Jimmy is a professional guitarist, singer and teacher from Washington, D.C. He has performed in many combinations as a soloist and bandleader in many different genres of music.
Jimmy performed jazz standards that are close to his heart. His mother exposed him to jazz daily from his earliest years. His fondest memories of her live on through these songs.
Watch this incredible performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Support – Men & Caregivers Recording, June 21, 2021
ASCO 2021 REVIEW
Prior to the start of today’s Support Group meeting, Herb Geller and Len Sierra highlight the most significant advanced prostate cancer papers from this year’s ASCO Conference. If you choose to skip directly to the ‘regular’ session, please go to 56:40 .
REGULAR SUPPORT GROUP MEETING
Editor’s Pick:Herb’s & Len’s review of ASCO is definitely worth a listen. But at the other , very basic extreme, Peter raised an important topic – how to remember to take your daily meds! (rd)
Topics Discussed
Consider a drug holiday after 7 yrs ADT; early Dx of BRCA in advanced PCa; what’s left after trying everything SOC?; nocturia; remembering to take your pills; consideration when starting ADT; insurance complicates radiating primary for Mx man
Chat Log
Mark Perloe (to Everyone): 4:31 PM: How long was ADT+abiraterone in the Peace 1 study
AnCan – rick (to Everyone): 4:36 PM: SOC in PEACE includes docetaxel. I read the purple slide differently
AnCan – rick (to Everyone): 4:45 PM: Sip-T = Provenge
Ted Healy – Portland, OR. (to Everyone): 4:55 PM: is this the interferon that has been used in the past for cancer and Hepc patients?
Ken (to Everyone): 4:56 PM: Herb your doing great….
Ted Healy – Portland, OR. (to Everyone): 4:57 PM: gotta go. Thank you so much!
Jake Hannam (to Everyone): 5:00 PM: Thank you Len and Herb!
Len Sierra (to Everyone): 5:01 PM: our pleasure and privilege!
Ken (to Everyone): 5:01 PM: many thanks….
AnCan – rick (to Everyone): 5:23 PM: herb@ancan.org and len@ancan.org
Mark Perloe (to Everyone): 5:46 PM: But I think he needs ADT and abiraterone first. If he has a few isolated lesions, I wonder if SBRT might be appropriate if a low dose of tumor. I went to UCLA.
John Ivory (to Everyone): 6:08 PM: Is this she? Research doesn’t look like a GUMO https://www.urmc.rochester.edu/people/22423597-adrienne-victor
Joe Murgia (to Everyone): 6:12 PM: I just looked up Dr Peter Van Veldhuizen at U of R and he is chairman of GU Oncology
Len Sierra (to Everyone): 6:18 PM: https://pubmed.ncbi.nlm.nih.gov/30236961/ Evaluation of Response to Enzalutamide Consecutively After Abiraterone Acetate/Prednisone Failure in Patients With Metastatic Castration-resistant Prostate Cancer
Jake Hannam (to Everyone): 6:20 PM: darolutamide or Nubeqa
Russ (to Everyone): 6:22 PM: Gotta run guys. Have a great night.
AnCan – rick (to Everyone): 6:27 PM: Myrbetriq
Joe Gallo (to Everyone): 6:28 PM: tamsulosin = FLOMAX
AnCan – rick (to Everyone): 6:29 PM: pumpkin seed oil
John Ivory (to Everyone): 6:29 PM: Quick PSA (public service address): Wednesday evening, turn off Netflix/HBO/basic cable and turn on our next Solo Arts Heal episode! “Living While Maybe Dying,” Performance about health anxiety with discussion. 10:30 PM ET/7:30 PT (also recorded for later viewing). https://ancan.org/solo-arts-heal/
Pat Martin (to Everyone): 6:32 PM: Zytiga 2x a day?
Joe Murgia (to Everyone): 6:32 PM: I use the upside down bottle too!
Blee in Virginia (to Everyone): 6:34 PM: They make those things for 2, 4,6 times per day Pat Martin (to Everyone): 6:34 PM: I use two weekly pill storages. One has a.m./p.m. I use a separate one for my Abi. one of the benefits of getting up through the night.
John Ivory (to Everyone): 6:37 PM: Also, if you didn’t attend Solo Arts Heal with our own Jimmy Greenfield last month, you owe it to yourself to have a look/listen after this call! https://www.youtube.com/watch?v=vp1xBkc3am8&t=1s
George (to Everyone): 6:38 PM: Pill organizer several times per day https://flents.com/products/maxi-pharmadose-pill-planner?variant=35230637686940¤cy=USD&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic&gclid=CjwKCAjw8cCGBhB6EiwAgORey8B_S4j34lw0AuB9MJ8lRi5CC_GpMJp_grpNMb6RJnZd2XleXVXMVBoCq4IQAvD_BwE
John Ivory (to Everyone): 6:42 PM: Relu GO lix. Yes, Or GO vix is correct. Always emphasis on the GO. Not sure why my mic isn’t working tonight
Mark Perloe (to Everyone): 6:47 PM: Rick, I light up like a searchlight at 0.3
Jake Hannam (to Organizer(s) Only): 6:48 PM: Antonarakis told Joel he expects PSMA scans to be available in July at Hopkins, anyway
AnCan – rick (to Everyone): 6:48 PM: But am I doing better in pronunciation Mr .I?
Herb Geller (to Organizer(s) Only): 6:50 PM: I think it will be more generally available very soon.
Marty Rotter (to Everyone): 6:52 PM: I stayed on 1 month Lupron for recurrence before having salvage radiation. Started with 30 days to see how it would effect me and stayed on it monthly for 5 more months.
Joe Gallo (to Organizer(s) Only): 6:52 PM: The Pyl may be more readily available since it has longer half life vs. G68 which is only hours – needing a generator or cyclotron.
Pat Martin (to Everyone): 6:52 PM: Get another PSA test to determine doubling time.
On June 2nd, Dr. Michael Schweizer (Assistant Professor, Division of Medical Oncology University of Washington School of Medicine) spoke at our Active Surveillance Virtual Support Group with a presentation titled “Meds: A potential new path to keep men on AS?”
As a medical oncologist of the Fred Hutch Cancer Center in Seattle, he usually sees no patients on active surveillance for low- to favorable intermediate-risk prostate cancer. But this changed when he conducted a study of how apalutamide, a drug used in men with more advanced cancer, on men on AS.
Dr. Schweizer said: “My goal is to help reduce the morbidity and mortality associated with diseases like prostate cancer through developing novel drug therapies.” He plans to study the impact of other meds on men on AS to offer a new way of managing AS.
We want to thank Dr. Schweizer 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.
On June 17th, Rafael L. Perez MD (Professor of Medicine, and Director of the Sarcoidosis Program at the Jane and Leonard Korman Respiratory Institute of Thomas Jefferson University) spoke at our Sarcoidosis Virtual Support Group with a presentation titled “Sarcoidosis: To Treat or Not to Treat? That Is the Question”
We want to thank Dr. Perez for answering our attendees questions!
Watch here:
To view the slides from this presentation, click here.
For information on our peer-led video chat SARCOIDOSIS 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.
Hi-Risk/Recurrent/Advanced PCa Video Support – Men & Caregivers Recording, June 14, 2021
Editor’s Pick What are the options when 27 cycles of chemo to treat recurrent disease gets tough to handle? (rd)
Topics Discussed
Initial treatment options for locally advanced Dx; what next after 27x chemo sessions w. PSA of 900; is ATM mutation suited to olaparib?; continuing cyclophosphamide; plan beyond the next Tx; Lupron + abiraterone + prednisone; rechallenging abi on edema after after break; Embr wrist gizmo may help with hot flashes; RO does not understand ‘pelvic girdle’RT; treating the primary tumor; what’s considered SBRT?
Chat Log
Jake Hannam (to Everyone): 3:30 PM: Axumin
Pat Martin (to Everyone): 3:31 PM: Much more available as the half-life is far longer than the Gallium isotope.
AnCan – rick (to Everyone): 3:32 PM: herb@ancan.org
Jake Hannam (to Organizer(s) Only): 3:40 PM: olaparib for atm?
Jim Marshall – Alexandria, VA (to Everyone): 3:49 PM: Love to know about ATM too, for I have a bad ATM gene. Jim Marshall
David Muslin (to Everyone): 4:35 PM: Margaret, Director of Customer Experience, Embrlabs.com Embr Labs Support email addressee support@embrlabs.com
James Barnes (to Everyone): 4:42 PM: HI David I am doing well thanks. Certainly dealing with the hot flashes asd well. My remedy is placing something cold on my wrists and inside the elbow and then my forehead which seems to make the flashes pass quickly.
AnCan – rick (to Everyone): 4:42 PM: https://www.prostatecancer.news/2021/05/new-guidelines-for-salvage-radiation.html https://www.prostatecancer.news/2018/10/whole-pelvic-salvage-radiation-short.html
Joel Blanchette – Reston, VA (to Everyone): 4:44 PM: The pelvic girdle is a ring-like bony structure, located in the lower part of the trunk. It connects the axial skeleton to the lower limbs. In this article, we shall look at the anatomy of the pelvic girdle – its bony landmarks, functions, and its clinical relevance.
Pat Martin (to Everyone): 4:46 PM: I asked my RO for an idea of where he was rdiating…he brought me into his office and showed me the graph of my pelvic area and the shape of the radiation scope.
Julian Morales (to Everyone): 4:47 PM: good to know – I am getting ready to start my radiation.
David Muslin (to Everyone): 4:59 PM: Have great night guys. Thanks for sharing and caring as always
George (to Everyone): 5:00 PM: thank you all. very good for me.
COMPLETELY FREE, you’ll find fun activities (trivia, dance party, scavenger hunts, prizes), meet new friends, and hear from top experts about topics relevant to you. Fertility, dating, mental health, and so much more.
You’ll also see AnCan’s own Wendy Garvin Mayo at the Practical Resources for Caregivers session on Sunday, and Alexa Jett(me) will be out and about representing any and everything AnCan. Don’t forget to say hi!
Hi-Risk/Recurrent/Advanced PCa Video Support – Men & Caregivers Recording, June 7, 2021
Editor’s Pick: Wow – over 50 in the Room this week, so lots of great stuff!!! From conventional vs unconventional ways to treat advanced PCa to multiple testimonies on how exercise combats fatigue; and, LHRH & heart risk – you decide! (rd)
Topics Discussed
ASCO ’21 Quick Highlights; Centers of Excellence vs independent GU Med Oncs; LHRH comparisons; compassionate use for Lu177 PSMA; combatting fatigue w. exercise; itching and rash site reaction to Lupron; enzalutamide vs apalutamide; predinisone use when diabetic; how long can you stay at your PSA nadir?; mistaken testosterone reading gets a laugh; lipid panel considerations; more & more chemo … & still more!; LHRH & heart risk again today; health anxiety raises its ugly head.
Chat Log
AnCan – rick (to Organizer(s) Only): 5:32 PM: 47 online + callers – I think that’s a record!
Jake Hannam (to Organizer(s) Only): 5:33 PM: I think so too
Len Sierra (to Organizer(s) Only): 5:33 PM: Yes! Amazing! Btw, now you can see why I could never regurgitate Howard’s incredibly strange and complex journey!
richard wassersug (to Everyone): 5:46 PM: Rick, You are right!
Bill Franklin (to Organizer(s) Only): 5:48 PM: This might be the biggest group I’ve seen yet. I still had a little a day or two after the treatment. I was good for a long time but then, unfortunately it came back. I’ve actually been having a lot of issues lately. Hopefully you’ll get to feeling better soon.
Mark Perloe (to Everyone): 5:55 PM: https://clinicaltrials.gov/ct2/show/NCT00859781?term=LU+177&cond=prostate+cancer&cntry=US&state=US%3ACA&city=Los+Angeles&dist=50&draw=2&rank=3
Pat Martin (to Everyone): 5:59 PM: Resistance training also builds BONES. Absolutely necessary while on ADT
Joel Blanchette – Reston, VA (to Everyone): 5:59 PM: We are at 50 in the room.
Mark Perloe (to Everyone): 6:02 PM: If you are on a statin, Co Q10 can reduce muscle issues.
AnCan – rick (to Jimmy Greenfield): 6:29 PM: What did we do for you today,
Jimmy G Jimmy Greenfield (Private): 6:30 PM: Just being yourselves, fantastic.
Paul Freda (to Everyone): 6:46 PM: I have the belly problem too. It is very frustrating and I have not been able to get rid of it. ….. I do feel better about it when resistance training exercsing at the fitness center.
Jimmy Greenfield (to Everyone): 6:48 PM: I’m with you Paul. Better to be strong-fat!
Bill Franklin (to Everyone): 6:51 PM: I did just shy of 2 years on lupron and never experienced any type of itching, rash, or hives after my shots.
Jeff Marchi (to Everyone): 6:53 PM: 4 years and I have no issues, can’t even remember which hip it went in
Pat Martin (to Everyone): 6:53 PM: How big of a percentage of T production is covered by Abi alone?
Herb Geller (to Everyone): 6:56 PM: Theoretically, Abi alone should do the job. But it requires some risk taking to go that route. Abi should block all T production independently of LHRH.
Jake Hannam (to Everyone): 6:59 PM: Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones by Wassersug, et al
Mark Perloe (to Everyone): 7:00 PM: BNP is used in US to monitor CHF, but not in healthy people.
Pat Martin (to Everyone): 7:03 PM: I’ll be getting an Eligard shot and PSA test this Wednesday.
AnCan – rick (to Len Sierra): 7:09 PM: SSRIs are anti-depression; he needs an anti anxiety
Len Sierra (Private): 7:09 PM: They are also anxiolytics, Rick. Anyway, anxiety and depression go hand in hand.
AnCan – rick (to Len Sierra): 7:11 PM: don’t agree with you – I don’t suffer from anxiety
Jimmy Greenfield (Private): 7:11 PM: Yes! Not nervous, I’m just excitable you know. Shingles vaccine shot is killing me!
Len Sierra (Private): 7:12 PM: Because you’re taking an SSRI or SNRI.
Hi-Risk/Recurrent/Advanced PCa Video Support – Men & Caregivers Recording, June 1, 2021
Editor’s Pick: More than once we discussed the reality that recurrent prostate cancer is often a chronic and manageable disease. THAT’S A TAKE HOME MESSAAGE!!!! (rd)
Topics Discussed
When’s the right time to pursue follow-up Tx post-RP; recurrence after LDR+IMRT+HT; managing PCa as a chronic disease; radiation field for salvage RT; SpaceOAR hydrogel for RT rectal protection; Lu177 PSMA success; pushing recalcitrant doc finallly reveals metastatic recurrence; proactively seeking site of recurrence
Chat Log
John Ivory (to Everyone): 3:01 PM: Mute-iner on the Bounty
Mark Perloe (to Everyone): 3:20 PM: Does anyone have knowledge on who runs the PTEN mutation test? Is this genomic on tissue and liquid biopsy or genetic?
Joel Blanchette – Reston, VA (to Everyone): 3:21 PM: Mine was dectected by the turmor test done by Foundation Medicine.
James Barnes (to Everyone): 3:22 PM: My genomic testing was also sent to Foundation Medicine.
Mark Perloe (to Everyone): 3:23 PM: Thanks Joel. Was it on the tumor or blood
Joel Blanchette – Reston, VA (to Everyone): 3:24 PM: On the tumor that came from my biopsy tissue. 50 % of men have PTEN.
Mark Perloe (to Everyone): 3:31 PM: That is why I’m interested in checking. It appears to play a role in bypassing testosterone, ie activating the receptor function. In culture mouse prostate cancer rapamycin and metformin may help stop its growth if PTEN is present. Studies in human have been inconclusive.
Ken (to Everyone): 3:33 PM: the combo of metformin and rapamycin has been looked and no one can find much info..
Mark Perloe (to Everyone): 3:34 PM: Yes, those trials are not very helpful. Is there a benefit to knowing PTEN status? If so, when.
Ken (to Everyone): 3:34 PM: for me G360 liquid biospy order by Paul Corn three months ago.
Joel Blanchette – Reston, VA (to Everyone): 3:34 PM: There is a clinical trial that has a drug replacing the PTEN loss. It is call something like apatinib
Herb Geller (to Everyone): 3:44 PM: Mark, Yes there is a benefit from knowing PTEN status, as there are potential downstream signals that get activated if PTEN is missing. A clinical trial with blocking Akt with PTEN loss:Ipatasertib Plus Abiraterone Plus Prednisone/Prednisolone, Relative to Placebo Plus Abiraterone Plus Prednisone/Prednisolone in Adult Male Patients With Metastatic Castrate-Resistant Prostate Cancer (IPATential150)
Herb Geller (to Everyone): 3:52 PM: I have to leave to teach a class
Jake Hannam (to Everyone): 3:53 PM: hoist that mainsail!
Pat Martin (to Everyone): 4:00 PM: I tried to get my M/O to tell me what treatment I would be having in 5 years…. Stumped him and while he was scratching his head, I offered ‘that will be the future, so hard to say was available. He agreed.
Blee (to Everyone): 4:07 PM: Thanks all, until next time… Blee
Jake Hannam (to Everyone): 4:08 PM: Just don’t ask yourself to repeat what you just said
John Ivory (to Everyone): 4:19 PM: I had a water “balloon” inserted every day that I had radiation
Ted Healy (to Everyone): 4:22 PM: this had a good overview on the gel IMHO https://zerocancer.org/learn/resources/webinars-videos/
Jake Hannam (to Everyone): 4:33 PM: The clivus (Latin for “slope”) is a bony part of the cranium at the skull base, a shallow depression behind the dorsum sellæ that slopes obliquely backward. It forms a gradual sloping process at the anterior most portion of the basilar occipital bone at its junction with the sphenoid bone.
Mark Perloe (to Everyone): 4:39 PM: Would he be a candidate for LU 177?
Ancan -rick (to Everyone): 4:40 PM: too early
Mark Perloe (to Everyone): 4:40 PM: With 5 lesions, treating oligomets with SBRT seems controversial. Studies have shown abiraterone is a better first match than Xtandi first.
Carlos Huerta (to Everyone): 4:46 PM: Has Xofigo been discussed?
Joel Blanchette listed a lengthy table showing PSA varying between 0.8 and 1.7 between 2/20 – 5/21 with a couple of aberrations.
Joel Blanchette – Reston, VA (to Everyone): Dr. Antonarakis: “I am not convinced that your PSA level is rising; it seems pretty stable to me. In my opinion, it is too early to get a CT scan or Bone scan. Also, I would not travel to California for PSMA-PET scan, because I anticipate that this will be available soon on the East Coast by June/July this summer. My advice would be to remain patient, and to get a PSMA-PET scan locally (or at Johns Hopkins) as soon as it becomes routinely available. We are all eagerly awaiting the FDA’s decision on DCFPyL this Friday…”
Well, we’ve been talking about this for many months and now it’s history — PyL PSMA-PET scanning is now FDA approved for two types of prostate cancer patients, i.e., those with newly diagnosed high-risk disease who are suspect for metastasis; and those patients with recurrent disease that have a rising PSA after primary therapy has failed. So this includes most of the men in AnCan’s High Risk/Recurrent/Advanced group which meets every week on alternating Mondays and Tuesdays.
Unlike the previous 68Ga-PSMA-11 scan approved in December of 2020, the PyL scan has a longer shelf life and therefore it can be commercially produced and shipped to any medical facility that is capable of performing PET imaging. One caveat, however, is that it may take Medicare several months before they will approve reimbursement for this scan.
The actual drug approved by the FDA is Pylarify made by Lantheus Holdings. It carries the radionuclide to the prostate cell so it can be seen and scanned.
