All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/.
Editor’s Pick:A tough choice between Herb goes fishin’ and reading PSMA scans …. very tricky still (rd)
Topics Discussed
VERU-111 trial – oral chemo; recurrent diesease at age 56; RNA sequencing but maybe not quite ready for prime time; what next after cyclophosphamide; is CHEK2 significant; Provenge discussion; Lu177 trials; brain met slows progression to trial; dubious CBCs; reading PSMA scans … x 2!; when to start chemo; SBRT dosage; CT vs PSMA SCANS; how long to remain on ADT; Herb goes fishing!
Chat Log
Jake Hannam (to Everyone): 5:22 PM: GU (genito-urinary) medical oncologist
rick stanton (to Everyone): 5:29 PM: might consider immunotherapy – might consider sequencing and considering appropriate targeted therapy (or both)
Pat Martin (to Everyone): 5:34 PM: A good rule of thumb I stay close to: Pain is NOT therapeutic
Jefff Preston (to Everyone): 5:37 PM: Wouldn’t Mr. Ernst’s father have taken some much more challenging chemo… different than the meds now.
Rick Ernst (to Everyone): 5:49 PM: Thanks for listening to my story. I need to leave the meeting.
rick stanton (Private): 5:54 PM: I could weigh in on targeted and immunotherapy if you wish
Joe Gallo (to Everyone): 5:59 PM: germline/iinherited. somatic.
rick stanton (to Everyone): 5:59 PM: I recommend whole exome RNASeq as well
rick stanton (to Everyone): 6:00 PM: Tempus XT will run that test in addition to ~648 “hot spot” genes. This can provide your med oncologist insights into immunotherapy options
Jake Hannam (to Everyone): 6:02 PM: You can buy it but ask about the trial (free)
Rick Davis (to Len Sierra): 6:08 PM: Will RNA Seq show anything that is currently available???
Len Sierra (Private): 6:10 PM: My guess is no.
Carl Forman (to Everyone): 6:11 PM: Interesting 30 min. video with Dr Aparicio at MD Anderson – PC & Immunotherapy, Changing the outlook for metastatic PC https://summit.cancerresearch.org/event/prostate-cancer-and-immunotherapy/
Rick Davis (to Everyone): 6:14 PM: Most interesting point made by Aparicio – that bone Mx is more resistant to immunotherapy!
Joe Gallo (to Everyone): 6:22 PM: Most common somatic are Oncotype Dx, Prolaris, Decipher.’
Rick Davis (to Everyone): 6:26 PM: Joe – those are not really suitable for advanced PCa
rick stanton (to Everyone): 6:30 PM: gotta help my wife – so I need to hop off – THANK YOU all!! Look forward to next time
Rusty (to Everyone): 6:31 PM: Have a great week everyone! I will not be on next week due to my shoulder replacement next Monday.
Jake Hannam (to Organizer(s) Only): 6:31 PM: good luck rusty!
Rick Davis (to Everyone): 6:33 PM: Wish you the very best with your shoulder, Rusty! Watch the recording to find out how Herb did at Reel Recovery
Jake Hannam (to Organizer(s) Only): 6:40 PM: Hi Herb!
Len Sierra (to Organizer(s) Only): 6:41 PM: What happened Herb? Did you get a fish hook through your finger??
Herb Geller (to Organizer(s) Only): 6:42 PM: :Greetings from Reel Recovery
Joe Gallo (to Organizer(s) Only): 6:42 PM: Take pictures Herb!
Jake Hannam (to Everyone): 6:46 PM: Procrit
Len Sierra (to Everyone): 6:46 PM: Procrit = erythropoietin
Bill Bradford (to Everyone): 6:47 PM: Thanks to all for listening to my story and providing great information. I will try to be a regular / frequent attendee to this group, as well as the U60 group. I did have one generic question for the group. I just started Zytiga + prednisone (in addition to the eligard I started 6 weeks ago). I know Zytiga is tough on the liver. I do enjoy a glass or two of wine each evening and a few beers on the weekend. Is it recommended to strictly abstain while on Zytiga?
Pat Martin (to Everyone): 6:47 PM: When I was anemic they prescibed Fe pills and licquid meds. All they did was constipate me. I brought it to my PCP she had me get a couple infusions.
Jeff Marchi (to Everyone): 6:49 PM: you can drink moderate amounts without issues, normally I drink a glass of wine or a beer every day, tests are good for liver and kidney dr never said to stop CONTINUED AT
Bruce Bocian (to Everyone): 6:50 PM: Pecking order at U of Chicago Adekunie “Kunie” Odunsi, Director Dr. Walter Stadler, Deputy Director, this is who I see.
Martin Wice (to Everyone): 6:54 PM: Have to go. Thank you.
Jake Hannam (to Everyone): 6:54 PM: I suggest you get a copy of the CD and ask for a 2nd opinion
John Ivory (to Everyone): 7:00 PM: I saw Szmulewitz at UChicago for a year (till my insurance didn’t work)–thought he was fantastic
Bruce Bocian (to Everyone): 7:00 PM: Good night!
Alan Moskowitz (to Everyone): 7:00 PM: Thanks Jake.
Joel Blanchette, Reston VA (to Everyone): 7:00 PM: Impression IMPRESSION: No definite marrow replacing lesion in the right occipital condyle. Focus of increased uptake on recent PET CT could be related to degenerative change. Multilevel degenerative changes in the cervical spine. Images and interpretation personally reviewed by: Arvin Kheterpal, MD
Bill Bradford (to Everyone): 7:00 PM: I have to drop off guys – glad to be part of the group.
Alan Moskowitz (to Everyone): 7:01 PM: Thanks everyone for your thoughts. Have to leave now.
Joe Gallo (to Everyone): 7:05 PM: joeg@ancan.org
Stephen Saft (to Everyone): 7:15 PM: I am going to say good night. I am exhausted. It is great to be part of these high level discussions. i appreciate the opportunity to listen and share. Good Night. Night.
Jake Hannam (to Everyone): 7:15 PM: Good to see you!
Ken (to Everyone): 7:22 PM: thanks guys…got to go! good job LenJ
Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Oct 12, 2021
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/.
Editor’s Pick: How do you explain to your medical team that AnCan is a great resource – some guys address that this week (unsolicited!!!)rd
Topics Discussed
High Risk diagnosis poses treatment questions; composing questions to ask your doc; addressing lung nodules; intestinal issues from enzalutamide???; testosterone is flowing back; talking to your medical team about AnCan; using Trimix; serial chemo may not be working; Caregiver has dad resisting treatment; trouble switchng medical oncologists.
Chat Log
Sylvester Mann (to Everyone): 3:32 PM: Good seeing you also. I’m doing ok. I have not been attending because I get the time mixed up plus I not usually home at this tine (smile).
Herb Geller (to Organizer(s) Only): 3:40 PM: So I got into Reel Recovery for next Monday. https://reelrecovery.org
Jake Hannam (to Organizer(s) Only): 3:41 PM: Congrats! Have fun!
Bill Franklin (to Organizer(s) Only): 3:42 PM: Man! Rick told me about that and I looked at it but will have to plan carefully in order to get in there. I hope you have a great time!
On October 6th, we had Sanoj Punnen, MD (Co-Chair of the Genitourinary Site Disease Group at the Sylvester Comprehensive Cancer Center, University of Miami, Miller School of Medicine) give a talk to our AS group titled “The Current State of Active Surveillance and How Active It Needs to Be”
Dr. Punnen said MRIs are playing an increasing role in diagnosing prostate cancer. He said MRIs must be performed before biopsies to target lesions.
“Get an MRI before a biopsy”, he stressed. ”MRI more likely do a better job of finding lesions appropriate for active surveillance.”
He said genomic and genetic testing can provide reassurance that AS is a safe path for individual patients.
He said he has long preferred transperineal biopsies over the so-called “gold standard” transrectal biopsies that carry a risk of deadly and disabling sepsis.
Dr. Punnen said if the MRI “looks good,” biopsies may need to be performed every three to five years rather than the annual biopsies that used to be performed in AS.
“One protocol will not fit all. Some need intense follow-up but some don’t,” he said.
Watch here:
Slides will be posted when available.
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.
We love Jennifer Digmann! She makes up one half of our lead MS moderators with her husband Dan. Here she shares what it was like being diagnosed with MS as a young adult, and talks about MS Rockstar Dr. Aaron Boster, who you may have seen around here at AnCan.
It was my senior year in college, and crazy things were happening with me. No, I don’t mean bar crawls or sorority parties, I’m remembering numbness in my hands and feet and incredible fatigue. While I probably was burning myself out studying, working and socializing, I never saw being diagnosed with multiple sclerosis in my future. But six months after graduation, I was diagnosed with that chronic, progressive disease of the central nervous system.
Hmm, MS? At 23 years old, I had other plans for my future, but the disease didn’t care. Its progression was relentless. There were three available disease modifying medications at the time—DMTs intended to slow the progression and severity of the disease—and I had no success with any of them. Time and my walking ability was going by so quickly. What was I going to do?
Fortunately at that time, I started hearing about a newly approved medication to treat more progressive forms of multiple sclerosis. Unfortunately, my neurologist at the time did not feel comfortable prescribing me this drug. Again, what was I going to do?
I was scared and frustrated, yet I knew something drastic had to happen to slow the progression of my disease. Even if that meant finding a new doctor who felt comfortable and was willing to prescribe this newly approved medication to me.
With my first neurologist’s blessing and referral, I began my more aggressive treatment at the University of Michigan neurology clinic. I was fortunate to find a team of fantastic doctors to treat my case. They prescribed a vibrant, electric blue infusion solution called Novantrone. While my MS did not drastically improve, it stabilized, and stability has been incredibly important to me. I am so thankful and credit those doctors with altering the course of my disease.
Full transparency, I am particularly fond and appreciative to the engaging young resident who was on my care team close to fifteen years ago. In those years after my Novantrone treatments, so much has happened in my life. My multiple sclerosis has stayed pretty stable, I was able to earn my graduate degree, and most importantly, I married the man of my dreams.
And not surprisingly, so much has happened in the life of that engaging young resident, too. Since his time at the U of M, Dr. Aaron Boster has become, well, Dr. Aaron Boster. He is a champion and a powerhouse for the multiple sclerosis community.
While Dr. Boster is no longer treating me, Dan and I still find value in the accessible, informative content he shares with the MS community. Dan and I were thrilled that he recently had a very thoughtful conversation with us which provided answers to our “7 Questions with a Couple” blog series.
AnCan is deeply saddened to hear about the loss of Rodney Reese, a tireless advocate for Sarcoidosis and moderator for AnCan’s Sarcoidosis group. We send our love to the family, friends, and entire community during this difficult time. In honor of Rodney, fellow moderator Frank wanted to share a little bit more about this incredible man. Thank you, Rodney! May his memory be a blessing to all.
I am going to preface this by saying this is one of the hardest things I ever wrote before. On Saturday we lost a great advocate but more importantly we lost an even greater man. Rodney Reese was so many things to so many people that knew him. He was a husband, father, son, brother and most important to him he was a grandfather. He always talked about his family.
For those in the Sarcoidosis Community that didn’t know him he should have touched you for the things he stood for and his actions for the Sarcoidosis Community. He was always thinking about how he could help someone or how he could make it better for those who couldn’t help themselves. Rodney always had this great presence when he walked into a room. You always knew you were with a very educated calm force. He always showed that grace, charisma, and had a charm that you were always drawn to.
Now Rodney to me was so much more. He was one of my best friends. He was my brother. We have been talking online for about ten years. We finally met physically at our first FSR Ambassador training with the original 15. We met and right away we hit it off. That is being mild about it. We were brothers right away. We talked during dinner, then some of us went to the hotel upstairs bar, we talked some more. Okay when I say some more we talked until the bartender said last call and our wives called us. We looked at our watches and saw it was after 4am. We had no idea of time. Nobody would have thought we just met for the first time. It was just that easy! But that is Rodney Reese! The next day we paid for it because we had a full day of training on maybe 2 hours of sleep. Did we care? No. We were there to meet others as well as learn.
Rodney was someone who would give me a calm feeling, as you all know I can be a bit “in your face, hothead at times.” He always knew what to say to get a smile out of me when I was going off about something. He also knew when it was time to let go as well and join me on my tirade. We worked hard and loved hard when it came to our advocating. I knew if I came up with an idea no matter how crazy or how quick I wanted to get it done. He would always say to me “I am in. You can count on me. Just tell me what you need me to do.” Every time I needed him; he was there. Even if he wasn’t feeling well, he would let me know he could do only a little bit, you could tell he felt bad about it. It didn’t matter to me if he did a lot or nothing at all, what mattered to me was that he approved. He was my mentor, that was unsaid, but I hope he knew he was. He always said, “How did I have the energy to do what I did?” He was very quick to give me a compliment. Like I said he knew how to make you feel better.
The second year there was another Ambassador who joined us, Paul Dickerson, an amazing man as well. Paul, Rodney, and I hit it off so well. People started to call us the Three Amigos. We hung out together at the training and even went out afterwards. The three of us would keep in touch. At that time, I wasn’t doing that well health wise and having those two positive people always made me smile. All three of us would call each other to see how we were doing. It wasn’t just a wellness check either, we would talk to each other for over an hour at least. But we never hung up the phone without saying “Love you brother.” Paul started that, but all three of us meant it.
In 2018, I was going through many health issues even being told I was terminal. It was those two brothers that helped me so much mentally to fight for my life.
Then in May 2018, Paul passed away. That was so hard for the two of us. Rodney and I talked that night for well over an hour. One thing we kept was “I love you brother.” You see Paul’s death hit both of us real hard. It was like losing a family member. I remember us talking about how we had to work harder to help others. We bonded even more after Paul passed, if that is possible.
We went through so much together as advocates. In August 2019, I remember calling him with another “great idea” I had. I remember saying to him” How about we start an online support group, for those patients, caregivers, and family members who couldn’t go to a face-to-face meeting or didn’t have one near them.” Once again Rodney says, “Sounds great when do we start?” Little did we know what was coming. We started the support group in November 2019. It kicked off and was amazing, still is going.
Then the pandemic hit…. In March 2020 we got hit with the pandemic. I got COVID in mid-March. Rodney and others stepped up. It was a tough time for me, but Rodney was calling checking up on me.
Then when I was getting better, something else happened…. George Floyd, Breonna Taylor, Ahmaud Arbery and others, and the protests. Well, that hit Rodney real hard, and he decided to stay away from the support group, as did others. I remember calling him and I never heard him so mad before in any of our earlier conversations. I just remember my heart went out with him. I felt so bad, and I thought there was nothing I could do to help ease his pain. I knew and felt his pain. I then made my usual quick idea, yet again. “Hey Rodney, why don’t we do a forum about Civil Justice or In-Justice? He was all for it. He jumped in as much as I did. He introduced me back with Bernie Mac Foundation, he also was able to bring on extra people on the panel. He did so much for that first forum and two after even being part of the panels and stepping in to moderate one of the forums for Mental Health and Social Justice. Not once did he want any credit for any of these forums. He put all the emphasis on me and what I did, but not once did he talk about how much he did to make sure these went off well.
You may ask why I made this dedication so long? Well, you all needed to see the Rodney I and many others like me knew.
He was an amazing man. He was a caring, loving man. He was a Brother to me!
The last time I spoke to him was the second day he went into the ICU. I am not even sure Harriet knew this. He said he had to beg and bribe the nurse to call me. He was on full oxygen, but he was still asking me how I was doing. He told me he was going to fight hard and tried to reassure me he was fighting as hard as he could. He wanted to make sure I was doing fine.
You see, that is what Rodney is and was. Always there, always caring, always Rodney! I am sad that Rodney is no longer with us. Well, that is an understatement. I am devastated. But I can hear Rodney telling me, “Come on, you know better, what is next?”
Rodney you may be gone, but you will always be with me. I know when I have the next idea you will be saying, “what do you need?” You will always be here. You will always be in my heart trying to calm me down again.
Rodney, “I Love You Brother!” I will keep the legacy of the Three Amigos going and forever trying to improve this community!
Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Oct 4, 2021
(Apologies for the multiple confusions re. links and disappearing videos on YouTube! Thanks to RS for the heads-up and hopefully we have resolved and this works fine: rd)
2 survey opportunities still open …… and AnCan receives a donation for each approved respondent.
……. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a…
…… if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat…
Editor’s Pick: Lots of talk this week about switching docs and when to get a GU med onc involved.(rd)
Topics Discussed
Chemotherapy and mood swings; exercise duing chemo; can you avoid HT with advanced disease?; when’s the time to switch to a GU med onc?; Pylarify vs Ga68 PSMA R11; with advanced disease, is 0.298 a low enough nadir?; 2nd pembro dose after cytokine storm; pancreatic spot stable; 1st cabazitaxel tolerable; daily prednisone w. chemo???; GU med onc refuses to measure testosterone; using ibuprofen
Chat Log
Len Sierra (to Everyone): 5:37 PM: Genitourinary
Alan Moskowitz (to Everyone): 5:51 PM: Just an update on the availability of Pylarify PSMA scans, Mt Sinai Hospital in NYC has just received written confirmation (Wednesday Sept 29) that Medicare will cover the standard 80% of the cost. They are currently scheduling. You can find out more by calling their PET/CT Nuclear Medicine lab at 212-241-7775. I was also advised that Medicare supplement insurers legally must pay their share if Medicare covers their share.
Stephen Saft (to Everyone): 5:52 PM: That is great! Thanks for the information.
Stephen Saft (to Everyone): 6:16 PM: I agree that people with prostate cancer should go to a Medical Oncologist that specializes only in Prostate Cancer. They are conversant with all of the research and new developments. There are new developments every day.
Stephen Saft (to Everyone): 6:18 PM: What is an R11 Scan?
Alan Moskowitz (to Everyone): 6:23 PM: Rick said the R11 relates to the Gallium PSMA scan available only in 2 California sites.
Stephen Saft (to Everyone): 6:30 PM: I heard that. I believe that Gallium 68 is the more common name for that scan. (NB…. there are several different ligands married to Ga68 that seek out PSMA. R11 is the FDA approved one at UCSF and UCLA. There are other ligands like R617 still awaiting approval. rd)
Joe Gallo (to Everyone): 6:32 PM: PSMA PET PYL is/will be more available as compared to Gallium-68 which requires a radionuclide generator on site due to limited half-life.
Jake Hannam (to Everyone): 6:33 PM: Good point, Joe.
Ted Healy- Portland, OR. (to Everyone): 6:58 PM: Gotta go folks. Thank you be safe!
Rick Davis (to Everyone): 6:59 PM: tx for your advice to Christo Ted
Joe Gallo (to Everyone): 7:06 PM: Nick is Dr. Berengi’s admin. He will give you the details and schedule. He is a very easy going guy. Probaby easier to contact. However Dr B is also a very personable guy and willing to talk.
Herb Geller (to Everyone): 7:18 PM: I gotta go. See you next week.
Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Sep 28, 2021
2 survey opportunities still open …… and AnCan receives a donation for each approved respondent.
…. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a
…. if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat .
Editor’s Pick:On a serious note, the discussion around how much HT with salvage radiation. On a fun note, Rusty’s experiecne at Reel Recovery and Jerry D’s fish take the bait! (rd)
Topics Discussed
Community cancer center provides sub-optimal advanced care; what’s the right duration for hormone therapy with salvage radiation; BAT and Xofigo whilst waiting for Lu177; switching docs … and will IHT be next?; wack-a-mole spot RT vs systemic treatment; Double J stents anyone? (let us know at info@ancan.org); visiting the military golf course; fun cancer retreats
Chat Log
Alan Moskowitz (to Everyone): 3:11 PM: This is the radiology lab that does Pylarify scans. https://www.woodburnmed.com/our-services. James Marshall, their coordinator said they have worked out the requirements and details to obtain Medicare coverage, and for major secondary insurers. They have done 70 Pylarify scans so far and consider themselves as leading edge. they are in Virginia, near the Washington DC area. They were the first to do Axumin scans in the DC area.
Herb Geller (to Everyone): 3:13 PM: I looked at their web site and they seem to be well prepared
Joe Gallo (to Organizer(s) Only): 3:26 PM: If Gary is a Vet he can still get the PSMA PET Pyl at no cost at the LA VA (UCLA)
Herb Geller (to Everyone): 3:29 PM: Gary could easily get to National Airport and then to the center in Annadale for a scan
Pat Martin (to Everyone): 3:34 PM: When I went off 2*5; I went cold turkey. Did not seem to cause any problems. Sometimes I just ignore side effects
AnCan – rick (to Everyone): 3:35 PM: Pat – you are very lucky. I had a friend who lost 30 lbs or more and lost his appetite for months.
Bruce Bocian (to Everyone): 3:40 PM: I got my G68 at U of M
Jake Hannam (to Everyone): 3:43 PM: Next meeting is Monday at 8:00 PM EST
Pat Martin (to Everyone): 3:46 PM: Dr. Lin is my Uro/Onc. I have the utmost regard for him.
Ben Nathanson (to Everyone): 3:50 PM: Assessing the Role and Optimal Duration of Hormonal Treatment in Association with Salvage Radiation Therapy After Radical Prostatectomy: Results from a Multi-Institutional Study https://www.europeanurology.com/article/S0302-2838(19)30112-5/fulltext (AnCan has full text – info@ancan.org)
Herb Geller (to Organizer(s) Only): 3:55 PM: Thanks, Ben. Very nice study.
David Muslin (to Everyone): 3:55 PM: Mark, I know how hard it is to be on ADT however, it’s great insurance not to have a recurrence.
Joe Gallo (to Organizer(s) Only): 3:56 PM: Off to the 50 Vets call. Goodnite.
Pat Martin (to Everyone): 3:59 PM: I have a similiar Dx with a Gl-9(5+4) in 2014, radiation. Was on ADT for 30 months. A vacation then PSA started rising. Now I’m back on ADT. Have Keytruda as a back up.
Herb Geller (to Organizer(s) Only): 4:00 PM: I’m on denosumab and bone density actually went up in a year.
AnCan – rick (to Everyone): 4:13 PM: Schweitzer is good, younger GU med onc. He knows AnCan – has done a seminar.
Pat Martin (to Everyone): 4:16 PM: I’ve mentioned AnCan to him a lot of the times I’ve seen him…4x a year for the last 7 years.
AnCan – rick (to Everyone): 4:23 PM: Gents …… we featured an article on agonist vs antagonist LHRH and their CVD impact back in 9/14/21 Reminder
John Ivory (to Everyone): 4:49 PM: I was asked to be an Orgovyx ambassador, but they wanted me to give access to my medical records for the agency that runs it; I decided to pull out. Didn’t want non-clinicians in my medical records
On September 30th, we had the absolute pleasure of spending the evening with Nancy Novack, founder of Nancy’s List. Nancy’s List is a comprehensive listing of integrative, financial and complementary listings to ease the burden for patients and caregivers navigating the cancer path.
In the 15 years Nancy Novack has been compiling numerous linked resources on Nancy’s List, no one has ever asked Nancy about her own personal favorites, until AnCan did! We had a wonderful evening of sharing resources (many of them free!), stories, and wait until you hear what Nancy thinks the oncology community needs more of.
On September 29th, we hosted the webinar “Prostate Cancer – Active Surveillance and More…Past, Present, and Future“.
Featuring Laurence Klotz, MD, a pioneer in developing active surveillance and other areas dealing with prostate cancer, told a webinar about his journey as a urology researcher at Sunnybrook Health Sciences Center in Toronto. With over diagnosis and overtreatment of prostate cancer in the 1990s with the introduction of screening PSA testing, he and his colleagues set out to develop a new strategy of close monitoring of men with low-risk Gleason 6 prostate cancer.
He sees rapid advance of introduction of highly accurate “liquid biopsies” that focus on DNA shed in urine by tumors. He sees great potential in focal therapy.
Watch it all here:
Special thanks to Myovant Sciences – Pfizer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.
We apologize, but slides are not available for this webinar.
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.
Through its CDMRP — Congressionally Directed Medical Research Programs — one of the largest US funders of medical research is the Department of Defense. It will take another blog post to learn how this came about (volunteers??), but they have multiple programs for many conditions including multiple cancers … you can check the complete list at https://cdmrp.army.mil/researchprograms. Attend any gathering of patient advocates, and you are likely to find ‘Consumer Reviewers’ for one budget or another.
AnCan has several reviewers, and not just for prostate cancer. One of our PCa group regulars just finished his maiden stint reviewing grant requests for the 2022 $100 million PCa allocation, making the CDMRP the country’s second largest funder of prostate cancer research. Ben Nathanson’s qualifications …. well, he has prostate cancer, participates in AnCan groups, and likes reading scientific papers. No PhD or MD required.
Len Sierra is a seasoned Consumer Reviewer and recommended Ben as a Consumer Reviewer. Consumer reviewers sit on a panel alongside scientists and clinicians, and have an equal vote in who gets funding. They’re asked to read certain proposal pages, not the entire thing. But if you’re the right sort of person for this job, you’ll want to try reading it all.
PCRP is always looking for reviewers. To learn more, contact Melissa Flathmann, Melissa.Flathmann@gdit.com. The Prostate Cancer Research Program’s web page is https://cdmrp.army.mil/pcrp . In Ben’s own words, here’s a little more about his experience:
I just helped review grant proposals for the second-largest source of prostate cancer research funding in the United States. They ignored the fact that I’m not a doctor and haven’t studied biology since high school. They wanted me for my body.
No request gets a dime until it’s been voted on by a consumer reviewer. “Consumer” in this case means you have prostate cancer or have had prostate cancer or are a caregiver for someone with prostate cancer. It’s not enough just to want prostate cancer.
My agency wasn’t NIH (the top funder); it was the Department of Defense, which quietly oversees funding for a number of civilian health programs. More than $100 million is budgeted for prostate cancer research in the coming fiscal year.
The Peace Corps liked to bill itself as “the toughest job you’ll ever love.” Although this is a different arm of government, I too was assigned to be a cultural ambassador to a developing region where they speak a foreign language. Every fellow reviewer was a scientist, a clinician, or a statistician. For every proposal, each of us, in our own language, drafts a critique, gets a turn to speak, and gets an equal vote.
As with the Peace Corps, ditto on the tough, ditto on the love. A consumer reviewer need only read selected pages of the proposal, including an Easy Reader page (“Lay abstract”) prepared just for you. But — personal view — you take this job to stand with the scientists at the edge of research, and if you don’t take the effort to read it all, all you’re seeing is the sales pitch. The process — it’s about six weeks — leaves you breathless. You’ve geeked with the geekiest.
They’re always looking for bodies like yours. Beyond disease qualifications, somebody from a patient-advocacy organization — such as AnCan — needs to write a letter of nomination. I was wildly fortunate that Len Sierra has been doing DoD reviews for years; I sent him my resume so he’d know I really am as geeky as I look, and he wrote me a lovely letter. Len, you got me a ticket to the edge of cancer discovery, and I can’t thank you enough.
