On February 3rd, we had the most pleasure of hosting Lindsey Byrne, MS, CGC (Licensed Genetic Counselor at The Ohio State University Wexner Medical Center) at our Active Surveillance Virtual Support Group. She is one of the few genetic counselors in the United States specializing in prostate cancer. Genetic counseling and testing are not only important for men with prostate cancer but to their children, siblings and potentially other family members. The information presented can benefit anyone in the Prostate Cancer arena, not just AS!
We here at AnCan want to sincerely thank Lindsey for providing this amazing resource to our community.
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.
Dr. B.J. Miller’s Prognosis Declaration Can Revolutionize the Quality of Your Treatment Path
One of the most compassionate, influential and remarkable docs I have had the great fortune to encounter since I got into this biz, is Dr. BJ Miller. We are honored to have BJ on our Advisory Board, and while we rarely speak live, I consider him a friend.
More significantly, a couple of men lost to this disease who I have known well, welcomed BJ to their medical teams …. and he made a huge difference to them. In a recent webiinar “Making Medical Decisions”, BJ shared a revolutionary document with us ….BJ’s Prognosis+Declaration
All too often medical teams put their foot in their mouth …. and sometimes unwittingly yours, when they provide an unrequested prognosis for your situation. Some may want to know how serious their disease is .. or how long they have to live; others frequenbtly do not. The Prognosis Declaration offers four (4) options from knowing everything to knowing nothing, or maybe having your caregiver know but not you. You determine what you want to hear, and you give the Prognosis Declaration to your medical team upfront ….. brilliant! The form was developed by one of BJ’s patients who lost his wife to cancer.
The whole webinar, Managing Your Medical Decisons, can be heard here – it’s truly worth a listen.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 9, 2021
Editor’s Pick:Dr. BJ Miller’s Prognosis Directive may change how you handle your diagnosis and treatment path! (rd)
Topics Discussed
denovo metastatic treatment; comparing liquid vs solid tissue Bx for sequencing; BJ Miller’s Prognosis Declaration; high risk Dx dilemma; how quickly does T return; exercsie training during chemo; ischemic brain image; Lu177 PSMA R2 PROter Trial; symptom management discussion; relugolix; cumulative ADT impact; ADT effective
Chat Log
Jake Hannam (to Everyone): 4:07 PM: nothing for me – FMI liquid biopsy tomorrow
Bob McHugh (to Everyone): 4:09 PM: I have Dr. Oh as well.
Pat Martin (to Everyone): 4:10 PM: Axumin scan scheduled for 03/04. 03/05 Lupron to restart. Still waiting to see if imunotherapy will work for me.
Bob McHugh (to Everyone): 4:18 PM: Been seeing Oh since ’15
Bill Franklin (to Organizer(s) Only): 4:20 PM: I have seen more than 30 on the screen with cameras on.
Jake Hannam (to Organizer(s) Only): 4:20 PM: limit was 25 last week too
Ken A (Private): 4:22 PM: rick i hope you will bring up the bj miller form
AnCan – rick (to Ken A): 4:22 PM: trying to when i get in
John Ivory (to Everyone): 4:25 PM: Thanks for the news re: the liquid biospy, Rick. Here’s the announcement https://bit.ly/3pcyDTa and for the nerds, the ASCO poster https://bit.ly/2Z2W4Dy
John Ivory (to Everyone): 4:44 PM: Elizabeth Kessler https://som.ucdenver.edu/Profiles/Faculty/Profile/21572
Jake Hannam (to Everyone): 4:48 PM: Axumin PET/CT
Pat Martin (to Everyone): 4:50 PM: Another question…How many cores positive?
AnCan – rick (to Everyone): 4:50 PM: Tx Gents
John Ivory (to Everyone): 4:54 PM: I guess I’m Mr. Chat today. Following up on Rick’s mention of whether men want to know their prognosis, he wrote a wonderful article about it here (acknowledging Len as well): https://ancan.org/required-reading-if-you-think-your-condition-is-life-threatening/
AnCan – rick (to Everyone): 4:59 PM: SBRT compared to other RT modes ….. Allen Edel (@tallallen) https://www.prostatecancer.news/2021/01/sbrt-for-high-risk-patients.html
Bob McHugh (to Everyone): 5:04 PM: No one mentioned proton therapy. Is that an option?
AnCan – rick (to Everyone): 5:06 PM: Not really, Bob …… because it will involve the same number of treatments as IMRT.
Bob McHugh (to Everyone): 5:07 PM: It used to be sold as more accurate and therefore less risk of side effects?
AnCan – rick (to Everyone): 5:08 PM: Some better side effects, some worse side effects
Bob McHugh (to Everyone): 5:09 PM: Understood
Jimmy Greenfield (to Everyone): 5:17 PM: Relugolix
Bob McHugh (to Everyone): 5:20 PM: https://www.acsm.org/get-stay-certified/get-certified/specialization/cet
John Ivory (to Everyone): 5:26 PM: Thanks, Bob & Rick. Here’s how to find a certified trainer in your area certifed cancer trainer in your area. https://certification2.acsm.org/profinder
Tracy Saville (to Everyone): 5:26 PM: have to jump a bit early. thanks, guys.
Pat Martin (to Everyone): 5:26 PM: I tried to get in Flu-BLAST study. Too fast of PSADT. But my med/onc is going to use same protocol as SOC.
John Ivory (to Everyone): 5:44 PM: I’m going to be joining an 8-week discussion group for cancer patients called Meaning-Centered Psychotherapy through Northwestern Hospital. I’m not sure when it will start bc they’re still recruiting for it. They said it was free (not sure if it’s because I’m a patient there). Here’s the link: https://bit.ly/3oidjLs
Joe (to Everyone): 5:47 PM: I see a PsychOncologist at UCH and we did the Meaning Centered work based on the ideas of Viktor Frankl. It was and is amazingly helpful for me.
John Ivory (to Everyone): 5:48 PM: Yes, Joe–same source. Thanks.
Joe (to Everyone): 5:49 PM: I think it was started by a fella at Sloan Kettering named Bill Breitbart….called him up and thanked him. My psych was one of his students.
Joe (to Everyone): 5:52 PM: gotta run….great to see veryone and helpful as always
John Ivory (to Everyone): 5:53 PM: Thanks, Joe. Here’s a good overview of Breitbart’s work
Joe Murgia (to Everyone): 5:53 PM: I priced ORGOVYX (relugolix) today on my Medicare Advantage site. It was around $1750.00 for 90 days at my local pharmacy. I was surprised it was that low.
Len Sierra (to Everyone): 5:54 PM: I agree, Joe — that is surprisingly low!
Herb Geller (to Everyone): 5:55 PM: Still not cheap
John Ivory (to Everyone): 5:55 PM: Joe M. I’m guessing that ORGOVYX has a financial benefit of not needing to be administered by a HCP (though that makes it a drug, not a procedure)
John Ivory (to Everyone): 5:57 PM: Funny anecdote–the week when my preapproval was in process for ORGOVYX, I didn’t remember the name of the drug bc I was sure I wouldn’t be approved. That week I did a market research study, and it turned out to be for ORGOVYX! So far I’m up a couple hundred bucks on it.
Joe Murgia (to Everyone): 5:58 PM: I will double check again tomorrow to make sure I did not misread the website pricing. If my Casodex monotherapy stops working, I’ll be considering Orgovyx.
Len Sierra (to Everyone): 6:01 PM: Joe, if you’re doing monotherapy, you’re better off with one of the newer AR blockers, like Xtandi, Erleada or Nubeqa. They have lower incidences of gynecomastia than Casodex.
John Ivory (to Everyone): 6:02 PM: Thank you Peter M. & Jake! I watch those videos sometimes.
Wang Gao Shan (to Everyone): 6:03 PM: Yes… Thank You Peter & Jake
Peter Monaco (to Everyone): 6:04 PM: Glad to help!
Jake Hannam (to Everyone): 6:09 PM: fyi – Peter M. does all the recordings now. I’m just his backup now.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 1, 2021
Editor’s Pick: Deciding on the best trial for you can be a challenge! (rd)
Topics Discussed
Denovo Mx Dx controlled w. abi on recurrence; GU med onc arrives late with recurrent disease challenge; ARROW trial for I-131, monoclonal antibody and enz; chemo compromises taste; after PSA of 3000, stable at less than 0.1 2 years later; does vaccine help your immune system; ganglion on shoulder; what’s teh best trial for Carl’s BRCA driven Pca?; artificial sphincter comes into play
Chat Log
Pat Martin (to Everyone): 6:04 PM: I saw a study that introduced stress to mice by…isolating them. I thought that was what this lockdown was meant to prove.
Peter Monaco (to Everyone): 6:07 PM: Still on track to leave for FL. Snow ends tomorrow so roads should be OK by Thursday.
Peter Kafka (to Everyone): 6:10 PM: New members should put their emails in the chat window. That would be helpful.
Michelle Amemiya (to Everyone): 6:13 PM: I am here on behalf of Steve Linett. Just going to listen. Thank you!
Herb Geller (to Everyone): 6:24 PM: Prostate Next seems to be for germline mutations according to their web site
Tracy Saville (to Everyone): 6:28 PM: i’m having same process done next month as part of a clinical trial.
Jake Hannam (to Everyone): 7:03 PM: Emmanuel S. Antonarakis, M.D.. Professor of Oncology and Urology, Johns Hopkins University
Joel Blanchette (to Everyone): 7:04 PM: JH GU Med Oncs: Michael Carducci, MD (https://www.hopkinsmedicine.org/profiles/results/directory/profile/0006406/michael-carducci) Samuel Denmeade, MD (https://www.hopkinsmedicine.org/profiles/results/directory/profile/0007191/samuel-denmeade) Emmanuel Antonarakis, MD (https://www.hopkinsmedicine.org/profiles/results/directory/profile/9451649/emmanuel-antonarakis) Mark Markowski, MD PhD https://www.hopkinsmedicine.org/profiles/results/directory/profile/6570385/mark-markowski Channing Paller, MD https://www.hopkinsmedicine.org/profiles/results/directory/profile/3138167/channing-paller Catherine Handy, MD https://www.hopkinsmedicine.org/profiles/results/directory/profile/10003341/catherine-handy
Rick Medley (to Everyone): 7:12 PM: Note I did the Provenge immunotherapytreatment in January 2020. I had extensive genitics analysis with zero genetic history of cancer.
Pat Martin (to Everyone): 7:13 PM: ARRIS study???
Rick Davis (to Everyone): 7:14 PM: ARROW study
Pat Martin (to Everyone): 7:15 PM: thanks
Rick Medley (to Everyone): 7:24 PM: I have really enjoyed gentle (Hatha) yoga
Frank Fabish (to Everyone): 7:27 PM: Thanks all
Rick Medley (to Everyone): 7:33 PM: Provenge immunotherapy is specifically for prostate cancer to build up your body’s own t-cells
Peter Kafka (to Everyone): 7:33 PM: I get my second Moderna shot on Friday.
Rick Medley (to Everyone): 7:35 PM: In talking with a nurse from the maker of provenge she said they have no markers for whether its working or not.
Pat Martin (to Everyone): 7:44 PM: What was the trial that was mentioned?
Herb Geller (to Everyone): 7:47 PM: Regeneron – NCT03972657
Joel Blanchette (to Everyone): 7:54 PM: Dr. Leach, Tower Urology CA
Carl Forman (to Everyone): 7:59 PM: related to Robin Leach?
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Jan 26, 2021
Editor’s Pick: What to do when your doc gives you a pink slip. …. and a very exciting BiTE trial with REGN5678! (rd)
Topics Discussed
Late stage treatment options; how PCa effects your exercise regime; what next after docetaxel stops working; SBRT for spot and gland Tx; PSA as a marker; handling pain from chemo; issues around unblinding a clinical trial; medical marijuana; handling constipation from pain meds; when youd doc kicks you out ….; meaning of MSI grades; hip replacement with bone mets; markers for small cell/NE PCa; exciting BiTE trial with REGN5678; resuming Tx after IHT;pill LHRH relugolix/orgovyx prescribed; Lupron vs Eligard
Chat Log
Ancan – rick (to Everyone): 4:28 PM: Kampel https://www.mskcc.org/cancer-care/doctors/lewis-kampel
Ancan – rick : 4:39 PM: https://ancan.org
Jim Ward (Private): 4:40 PM: HI Rick — Does AnCan sponsor a colorectal cancer support group? I checked the list of groups on AnCan.org, but missed it if there is one. Thx!
Ancan – rick (to Jim Ward): 4:43 PM: we are working on it, and we have been trying to establish for some time. But not yet ….. WE do have the Speaking Freely group and the Caregivers Group that are pan-cancer. I do know a number of resources for colorectal. We can discuss offline.
Jim Ward (Private): 4:48 PM: Sounds good, Rick. Someone I know has colon cancer (largely under control). She might well benefit from the Speaking Freely group until the colon group gets set up. Thank you! Except Speaking Freely is just for men, I think! Well, will look forward to discussing off-line.
Ancan – rick (to Everyone): 4:57 PM: Speaking Freely https://ancan.org/men-speaking-freely/
Ancan – rick (to Everyone): 4:58 PM: Stereotactic Body Radiation Therapy – SBRT
Mark Perloe (to Everyone): 5:02 PM: Tramadol 100 mg ER might be useful.
Bob McHugh (to Everyone): 5:04 PM: Meloxicam is a prescription NSAID.
Mark Perloe (to Everyone): 5:08 PM: So is tramadol. Do not take on an empty stomach for either.
Ancan – rick): 5:23 PM: Alan Bryce http://www.mayoclinic.org/biographies/bryce-alan-h-m-d/bio-20055430
If you’ve ever come to one of our Virtual Support Groups, you’ve probably heard “be your own best advocate“! It is a favorite mantra of Rick’s, and I’m happy to report it’s rubbed off on me as well. That driving philosophy inspires us to provide information via our groups, webinars, and this blog.
We came across a great blog post by our friends at CancerConnect that does just that. C.H. Weaver M.D wrote a phenomenal piece titled “An Oncologist Explains “Routine” Blood Tests Performed in Cancer Patients“. It has everything from CBC (Complete Blood Count) to more specialized tests like PT (Prothrombin time) and Ferritin. I love how simple Dr. Weaver explained things, and provided images too. As a visual learner, it was great to see examples.
YOU are a very important part of your care team, and I’m certain this will help empower you even further when you get your lab results back.
May all your lab draws be quick, painless, and easily understood!
Aloha, friends! We have some wonderful thoughts once again from our Board Chair, moderator, and most important, our dear friend Peter Kafka. I found myself nodding to myself many times while reading this, and I’m sure you will too. Thank you Peter, for voicing what our thoughts so beautifully!
As I sit down to write this reminder notice about our gathering on Monday my thoughts are a little muddied. I have been thinking about this responsibility for several days but my body has kind of been feeling “junk”. As a result, the bright, cheery and creative thoughts have been buried in the pickle barrel of my mind and the surface seems clouded with a scummy brine. What to do?
Anyone living with cancer, and particularly those of us under some form of ongoing treatment go through cycles of feeling out of sorts. Nothing you can point to in a symptomatic sense that is the source of the malaise, just a general feeling of “BLAH”. Enough so that it can color the day gray.
In cycles such as this, whether short or long I have learned to show up as best I can. I don’t want to drag others around me into the clouds. I don’t need sympathy, or well-intentioned inquiries as to; “what’s wrong”? Nothing is wrong in my best guess. It is just part of the rhythm of this cancer dance and I am pretty used to it after all these years.
I am very aware that there are many who are battling with much more challenging circumstances at this moment. Whether it be those on our calls who have been very candid about their own prognosis or progression of prostate cancer, or the many thousands around the world who are fighting for their lives at home or in hospitals against the ravages of the Covid-19 virus. By now, after a year into this worldwide pandemic there are not many of us who don’t have some degree of connection to others who are or have suffered with this virus.
We are fortunate that we have such a strong body of peer support for our journey with prostate cancer. We can be there for each other and lift up the spirits of those who might be scared or challenged. We have all been there.
So, it is with these thoughts that I would invite you to join our ongoing conversations and discussions about our challenges with a diagnosis of prostate cancer as we support each other. Our general focus is on the bright side, the positive and encouraging medical advances and knowledge about our disease as well as our individual victories and successes. But we are certainly attuned to the darker side of this disease and very much aware of the threat.
We at AnCan through our Virtual online/telephone weekly support meetings and advocacy, work hard as peers to provide whatever support and backup as we can in your journey with prostate cancer. But we don’t claim to have all the answers. We encourage you to share your experiences. We learn from each other. Keep connected, information is power! We are always there for you but you are “Your Own Best Advocate!”
Ho’oponopono – is a Hawaiian practice of reflection and forgiveness. On Saturday, January 24rd at 11am EST, Cindy Cooley Brockway and I are hosting a second Morning Shared Journaling Experience that is a reinterpretation of this beautiful practice.
”I’m sorry. Please forgive me. Thank you. I love you.” Gentle, cleansing, creative and refreshing.
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/Rec/Adv PCa Virtual Support Men & Caregivers Jan18
Editor’s Pick: Do you want to die of prostate cancer? – a rarely discussed topic, and understandably so! Also good discussions on blood pressure, DEXA scans, and why you don’t stay with a urologist! (rd)
Topics Discussed:
End of your treatment road … or just your doc’s road?; adding a 2nd HT treatment; when to return to treatment on intermittent HT; a prostate cancer death; spot radiation vs systemic treatment for BRCA disease progression; lupus update; femur metastasis; UCLA will reimburse when Medicare approves PSMA scan; stable PSA post chemo; testosterone not dropping below 40; 12 mo vs longer on initial LHRH; bone health, exercise & DEXA scans are important; starting abiraterone; blood pressure issues; trial fails …. prospective new trials ARV110 & AMG 160; feeling good on HT; alternatives to LHRH
Chat Log
AnCan – rick 6:11 PM: Re. Ernst – he is still with a uro!
AnCan – rick: 6:13 PM: In that case he doesn’t need a GU med onc!
AnCan – rick (to Everyone): 6:17 PM: GU = genitourinary medical oncologist
John Ivory: 6:37 PM: His doc doesn’t specialize in PCa https://ocbloodandcancercare.com/physicians/rao.html
AnCan – rick (to Everyone): 6:40 PM: Rana McKay UCSD, Tanya Dorf …. City of Hope, David Agus ….. USC
AnCan – rick: 7:12 PM: We have been telling Carl this!! Allen has to tell him
Ken A: 7:19 PM: good job Herb
John Ivory (to Everyone): 7:25 PM: FANTASTIC to hear you’re getting treatment, Rusty!
Rusty (to Everyone): 7:27 PM: I learned my lesson with putting PC/PSA.
Carl Forman : 7:29 PM: Saraiya did discuss considering chemo or radium as a back-up plan. I understand the need to follow-up with systemic therapy.
AnCan – rick (to Organizer(s) Only): 7:42 PM: Herb – tell folks what a dexa is and why they should get one.
John Ivory: 7:49 PM: Rick, in raising your bone density, do you think it was primarily from rowing, or do you also do a lot of resistance training
Jake Hannam (to Everyone): 7:50 PM: What is a Bone Density Scan (DEXA,DXA)? Bone density scanning, also called dual-energy x-ray absorptiometry (DXA) or bone densitometry, is an enhanced form of x-ray technology that is used to measure bone loss. DXA is today’s established standard for measuring bone mineral density (BMD). An x-ray (radiograph) is a noninvasive medical test that helps physicians diagnose and treat medical conditions. Imaging with x-rays involves exposing a part of the body to a small dose of ionizing radiation to produce pictures of the inside of the body. X-rays are the oldest and most frequently used form of medical imaging. DXA is most often performed on the lower spine and hips. In children and some adults, the whole body is sometimes scanned. Peripheral devices that use x-ray or ultrasound are sometimes used to screen for low bone mass, mostly at the forearm. In some communities, a CT scan with special software can also be used to diagnose or monitor low bone mass (QCT). This is accurate but less commonly used than DXA
AnCan – rick: 7:51 PM: Rowing was certainly a factor. Plus I did resistance 3x week especially to stress my spine
John Ivory: 7:51 PM: Thanks, Rick
Pat Martin (to Everyone): 8:04 PM: Would an Axumin scan be of benefit at this point. PSA about 1.0
AnCan – rick (to Everyone): 8:05 PM: I would say ….. yes, Pat.
Len Sierra (to Everyone): 8:05 PM: Pat, that’s borderline detectable for Axumin.
Rusty (to Everyone): 8:06 PM: I gotta run. Good night all.
Pat Martin (Private): 8:08 PM: I’ll contact Dr. Schweitzer and press him for additional tests.
Peter Monaco (to Organizer(s) Only): 8:13 PM: Have to go gents. Will upload recording first thing tomorrow.
