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.
Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, May 25, 2021
PLEASE NOTE: June metings are NOT on our regualr schedule due to the calendar quirk of 5 Tuesdays. June Schedule will be:
Tue, June 1 @ 6 pm Eastern – Peter K
Mon, June 7 @ 8 pm Eastern – rd
Tue, June 15 @ 6 pm Eastern – Len
Mon, June 21 @ 8 pm Eastern – Herb
Editor’s Pick: Gent sees PSA progression and control – but no other signs of disease; and new trial offers two radionuclides concurrently – but beware of heavy side effects. (rd)
Topics Discussed
BAT and radionuclide trials; PSMA PET scans in W. Los Angeles; disese progression but no physical signs; darolutamide; is searing pain from abi?; HDR+IMRT+HT; double radionuclide trial considered despite side effects; sweet smelling urine – keto bodies?; why not biopsy lymphs on Dx; chemo diminishes tumors everywhere
Chat Log
Joe Gallo (to Everyone): 3:23 PM: PTEN?
Ravi (to Everyone): 3:34 PM: I contact the company that makes the Pyl-PSMA. They were very confident of May end. Joe Gallo (to Everyone): 3:40 PM: Anyone interested Vet contact Alexander.Alas@va.gov Research coordinator at the West VA in LA. 310-478-3711 x 41399 or contact me joeg@ancan.org
rick – ancan (to Peter): 4:11 PM: Peter – Ken’s email is ken_anderson@ancan.org 480 540 8926 Joe – joeg@ancan.org 215 499 4001
Joe Gallo (to Everyone): 4:35 PM: Apparently there is an opinion from the ASCENDE RT. In higher risk cancers (unfavorable intermediate risk and high risk), recent results from the ASCENDE RT trial show a benefit in recurrence free survival for high risk prostate cancer patients who undergo brachytherapy (LDR in the case of the study), as a boost after external beam radiation.
Julian Morales (to Everyone): 4:43 PM: Thanks Joe.The Brachy RO want to do HDR but will discuss with IMRT RO to see which is better before or after.
John Ivory (to Everyone): 4:47 PM: Quick public service announcement: Our own Jimmy Greenfield will be performing tomorrow night as part of AnCan’s collaboration with The Marsh theater. He’ll be singing and playing ukulele and will be talking about how the arts have helped him live with his disease. Will take place here: tomorrow at 10:30 ET/9:30 CT/ 7:30 PT here: https://themarsh.org/soloartsheal/
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!
On April 28th, we had the pleasure of having Elizabeth McLachlan!
Elizabeth shared excerpts of how she uses creative pursuits like tap dancing and singing to express herself, undeterred by the challenges that multiple sclerosis (MS) has brought into her life. MS is a debilitating disease that attacks the brain and central nervous system.
Afterwards, Rick Davis and Elizabeth discussed how important creative expression is. We’re certain you’ll fall in love with Elizabeth too.
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 Chat Support – Men & Caregivers Recording, May 17, 2021
Editor’s Pick: When the standard of care works and has not been tried, should the doc recommend an unproven trial? Also, is it true to say you’ll never come off ADT? (rd)
Topics Discussed
Standard of Care vs Trials; Actinium 225 vs Lu 177 PSMA trials …. personal experiences; are lung nodules really PCa?; Vets PSMA trial; what’s NGS?; shortness of breath and Xgeva; darolutamide/rosuvastatin interaction; using a heart rate monitor to exercise; ADT and metabolic syndrome/ lipid panel; enz/abi switch works; telling cancer pain from inflammation; enzalutamide holiday; is lifetime ADT really the case?; 1.7 PSA allows for Axumin scan; when to do Provenge; brachy+IMRT+HT; neuropathy remedies; RT for recurrence
Chat Log
Paul Freda (Private): 5:30 PM:
Rick How long after beginning a drug like Xtandi should one wait to do a blood test to see if it is working ?
rick – ancan (to Paul Freda): 5:32 PM: 30 days
Paul Freda (Private): 5:32 PM: OK thanks
rick – ancan (to Everyone): 5:51 PM: Homogeneity of Mx PCa …. https://www.fredhutch.org/en/news/center-news/2016/02/metastatic-prostate-cancer-and-precision-oncology.html
rick – ancan (to Everyone): 5:51 PM: http://www.eurekalert.org/pub_releases/2016-02/fhcr-poc022516.php
rick – ancan (to Everyone): 5:57 PM: joeg@ancan.org
Bruce Bocian (to Everyone): 5:58 PM: My son is a Major in the Corps!
sylvester mann (to Everyone): 6:05 PM: Thanks to everyone but I must leave. Best regards.
Joel Blanchette – Reston, VA (to Everyone): 6:06 PM: Contact: Alex Alas 310-478-3711 ext 41399 Alexander.Alas@va.gov West LA VA Hospital Contact.
rick – ancan (to Everyone): 6:06 PM: Tx Joel!
Bruce Bocian (to Everyone): 6:11 PM: My bike is in a cycle-ops, works b
rick – ancan (to Everyone): 7:03 PM: gabapentin/Neurontin
rick – ancan (to Everyone): 7:04 PM: Lyrica/pregabalin
Richard Maye lives with Gleason 3+4 prostate cancer and participates in AnCan’s Active Surveillance and Low/Intermediate Video Chat Groups. In communications with AnCan, Richard had thoughts on how he responds to QoL issues surrounding his diagnosis, that we encouraged him to blog. (rd)
AnCan Participant Richard Maye Muses on Quality of Life
I have Prostate Cancer! Now what do I do? After receiving my diagnosis in November 2018, a month prior to turning age 71, I knew that it was imperative for me to come to terms with not only understanding this disease, but what did this mean for how I had previously viewed living out my life.
While I had talked about Quality of Life, the ideas that I included in that term were vague and general. Terms such as: Travel (where, when?); Continue to Work at least part time (doing what? for how long?); Help other People in need (Who, Where, How?); …. you get the point. I also used the term when I looked back at my Father’s end days. My Father had lung cancer and advanced metastatic prostate cancer. His end days were not filled what we would call a Quality of Life. Twenty years ago, the treatment option for his prostate cancer was chemo therapy, an option that he made clear would not be considered. I respected him all of my life including in this life decision, and watched how he lived his days with determination and without complaint.
Now, this is different, this is me. The diagnosis, while generally favorable, caused a sense of urgency for me to decide how I would live my days. Given my long-term PSA history I had researched prostate cancer, some of the treatments, side effects and related issues. I started with the question – did I believe the diagnosis? To answer this important starting point, I had a Genomic Test and also a second opinion. From there I spoke with the Urologist, Medical Oncologist, Radiation Oncologist, and two family practitioners. Research led me to the Prostate Cancer Foundation, to AnCan, UsToo and other invaluable resources. It was very important to include my wife in every step of this process. As a man of faith, I knew I had to put this in God’s hands and trust Him for guidance.
So here I was with all of this information and consultation, but it still came down to how am I going to live with this? During my administrative career as a senior administrator in healthcare to make important decisions I used this analytical process: Identify the problem; Make it a priority; Evaluate its scope; Assess the potential impact; Develop a solution; Make the decision; and, Implement it. That process is the hinge upon which the gate of my success rested.
Using that approach forced me to decide what would become my operational parameters for the term Quality of Life going forward. It ended when I told my wife and physicians that I was going to respect this cancer BUT not fear it. This means that I was not going to rush into treatment, I would go on Active Surveillance, modify my living standards but not live in fear. Here is a small example of an area included in my Quality of Life Guide. Nutrition and Diet are important to all of us no matter our health status and it plays a big role in the prevention and fighting cancer. If I want to have a piece of my grandchildren’s birthday cake, have a cocktail with our son, share a bottle of wine with my wife, I will do so and not stay awake at night wondering if I just promoted my cancer to grow. Yes, I have reduced the intake of sugar, alcohol, red meat and consumed an ocean of decaffeinated green tea, eat more vegetables than ever in my life, vigorously exercise every day and laugh.
The risk and side effects of the various treatments that are available today along with the potential for the cancer to return were weighed heavily in my decision process. Understanding the risk and consequences, I decided to wait, but wait watchfully in Active Surveilance. With regular monitoring of my PSA, I have postponed having another biopsy and glad that I did, given the trend toward using the Transperineal procedure. New diagnosis and treatments are being announced frequently.
Understandably there are men in different stages of their cancer than I, but the point is this. Define what Quality of Life means to you. Look at your life as it is currently, your life expectancy, family, career and then determine what will be your ROL (Return on Life) for the remainder of your days.
According the Social Security actuarial tables, my life expectancy is another 12 years. That’s about 4,400 days. For now, I can go about the business of living instead of being plagued by anxiety, depression and roller coaster emotions.
