At AnCan, we love our veterans of any branch, and we sincerely thank you for your service. Our AnCan “Vet-In-Chief” Marine Captain Joe Gallo recently learnt about a clinical trial at the West Los Angeles VA that offers 18F-DCFPyl PSMA scanning for any Vet whatever their diagnosis. Mike Crosby, CEO of Veterans Prostate Cancer Awareness together with ZERO are working to find transportation subsidies. It is open and available to any veteran at no cost!
What is PSMA-PET imaging? It has emerged as a new frontier in prostate cancer diagnosis and treatment.
The key advantage to PSMA-PET imaging is the fact that it’s a lot more sensitive than standard imaging. It picks up lymph nodes, visceral metastases, bone metastases, and does it at a very low PSA level
PSMA is a membrane-bound protein that’s highly expressed in 90% of prostate cancer.
This is the first anniversary of a second study. Close to 200 Veterans have been enrolled and benefitted from PSMA imaging at West Los Angeles VA medical center. The first study also enrolled over 160 subjects with newly diagnosed prostate cancer from all around the country.
Peter Kafka, our Board Chair and Lead Moderator for several of our video-chat virtual support groups, poignantly reflects this week on the meaning of 7 years living with his prostate cancer. (rd)
One subject that comes up fairly often in our prostate cancer support calls is “fatigue”. Usually in the context of dealing with physical fatigue as a side effect of various treatment drugs. But I am thinking today about a different level of fatigue that affects us mentally and emotionally. We hear a lot about this in regards to the ongoing Covid-19 pandemic. A year or so into it and people are crying out, “Enough already!”. But I would guess that many of you feel the same sentiment regarding your ongoing experience with a prostate cancer diagnosis.
I have reached my 7-year anniversary since my official diagnosis of prostate cancer. What is it about the number seven? Yes, it has some kind of man-made spiritual significance. The seven colors of the rainbow, the seven days of the week, Snow White and the Seven Dwarfs and of course the Seven-year Itch. But as I (celebrate?) this seven-year anniversary of dealing with my prostate cancer I hear myself crying out, “Enough Already!”. Fatigue is setting in.
I have done my best to look at this disease from a wide variety of angles. The friendships I have made with many of you. The increased understanding of the dynamics of prostate cancer among an ever-increasing body of men and women. The empowerment of taking on the job of being one’s own best advocate. But in honesty, prostate cancer and all the accompanying side effects of the variety of treatment modalities that I have, and continue to experience, bring on a good deal of mental and emotional fatigue.
I don’t believe that medical science graphs this fatigue factor. We read a lot about “overall survival – OS” or “progression free survival – PFS”. I guess the category of “Quality of Life” might come closest to what I am talking about, but it doesn’t quite capture the essence. I suspect that any of you who have been on this journey for any length of time know what I am talking about. I don’t have an answer, and I am certainly not selling any kind of snake oil for treatment. I know in my heart and mind that this bump in the road will pass and I will move forward. I always do.
We had our first The TALK, a series of webinars addressing how families speak to each other about their health conditions, of 2021! On Wednesday March 31st, we were honored to have many “pairs” of different types talk about inherited mutations.
With opening commentary and resources from Melissa Rosen(Sharsheret) and Lisa Schlager (FORCE), Rick then introduced moderator extraordinaire, Lindsey Byrne!
We met Ilana Feuchter, with mom, Rozzie Brilliant (BRCA), Peter Kafka, with son Joel Kafka (Lynch mutation, MSH6, and somatic BRCA), sisters Karin Roseman and Stefanie Tsantilis (BRCA), and Dr. Pamela Munster, and with son, Max Daud (BRCA). They shared open and honestly about their own “talks”, and shared many relatable experiences.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Apr 5, 2021
Editor’s PickShould docs make overall survival predictions – it scares a newly diagnosed man, while an old hand laughs! (rd)
Topics Discussed
High-risk PCa treatment decision; recurrence – beware of overall survival preductions; durable remission and NED; experiencing spinal collapse; Spot Radiation; scanning for recurrence; ARV110 trial experience; can you add a drug to your trial; lymphedema issues; CBC questions; picking up rib lesions; 5 yrs out when the doc didn’t give you 5; record your medical meetings; estrogen patch for hot flashes; more chemo …. & more & more; gabapentin for neuropathy; PBRT vs IMRT; going off ADT to get a scan result; …. & lots of nutrition discussed in the Chat Log!
Chat Log
Jeremy (to Everyone): 5:21 PM: https://www.fda.gov/news-events/press-announcements/fda-approves-first-psma-targeted-pet-imaging-drug-men-prostate-cancer
Ken (to Everyone): 5:24 PM: hey jake…. chemo #15 this past friday so dealing with the side effects. alk phos continued down 10 points and psa down 2
Ted Healy (to Everyone): 5:46 PM: record your meetings
Jake Hannam (to Everyone): 5:47 PM: Yes we do, Ted (this and several others)
Ted Healy (to Everyone): 5:48 PM: no, meetings with the dr
John I (to Everyone): 5:52 PM: Wow, Sylvester, that was inspirational!!!
Len Sierra (to Everyone): 5:53 PM: I agree with John – we need to hear more from Sylvester on these calls!
Jake Hannam (to Everyone): 6:26 PM: Radium 223 negates future use of lutetium?
Jake Hannam (to Everyone): 6:27 PM: Is that true?
Herb Geller (to Everyone): 6:36 PM: I don’t know Ra-223 negates anything but it doesn’t seem that promising compared to other therapies.
Rick Davis (to Everyone): 6:38 PM: radionuclide trials usually prevent particpation if you have already taken a radionuclide. check the Lu177 trials
Carl Forman (to Everyone): 6:52 PM: Thanks so much to Scott Hogan for being able to participate here tonight. Hope to see you here again. Best wishes.
Ted Healy (to Everyone): 7:06 PM: I’m sorry, have to go. thank you all!
Vanita Gaglani (to Everyone): 7:10 PM: walnuts, greens,soaked fenugreek seeds ( 1 tsp per day) real licorice roots, sunflower seeds, spearmint tea all help with hot flashes. Len Fenugreek seeds can be bought in any Indian grocery store.If you have an Indian grocery store near you they have the greens called Methi. Some of the anti carcinogenic ,anti inflammatory natural products include Turmeric, cummin seeds, cinnamon.
eric (to Everyone): 7:16 PM: is this for anti inflammatory
Carlos Huerta (to Everyone): 7:19 PM: Alpha Lipoic Acid
Vanita Gaglani (to Everyone): 7:19 PM: yes. But get real turmeric powder , not capsules.1/4 tsp each you can put all in mik and drink or in tea, warm water. I am happy to answer any questions. hello@vanitasrehab.com. These are natural anti inflammatories.
Rick Davis (to Everyone): 7:22 PM: IMRT vs PBRT side effects http://prostatecancerinfolink.net/2012/02/01/first-directly-comparative-data-question-safety-of-pbrt-vs-imrt/
Carlos Huerta (to Everyone): 7:23 PM: Get a PSMA PET to target the protons
Vanita Gaglani (to Everyone): 7:24 PM: For all treatments try to keep the bladder filled 8-10 oz of urine.
Rick Davis (to Everyone): 7:24 PM: Not necessarily true Vanita – as we heard earlier
Vanita Gaglani (to Everyone): 7:24 PM: we do not need 32 oz of fluid because most men cannot hold it.or women.
John I (to Everyone): 7:26 PM: I needed a full bladder, but I believe it was 24 ounces (though I’m small)
Vanita Gaglani (to Everyone): 7:28 PM: 24 oz is difficult to hold
John I (to Everyone): 7:29 PM: They timed it–drank it 20 min before treatment & tretament was quick.It was hard to hold only if the machine went down & I had to wait a few extra minutes
Vanita Gaglani (to Everyone): 7:30 PM: if anyone can tolerate plain yoghurt eating that helps a lot too Agreed John.
Bruce Bocian (to Everyone): 7:39 PM: please type those letters of that stanford test in the chat box, not sure I heard it correct
Rick Davis (to Everyone): 7:40 PM: 17F DCFPyl
Peter Kafka (to Everyone): 7:40 PM: 17F DCF-PYL PSMA PET CT
John I (to Everyone): 7:42 PM: Great session, thanks Rick
Michele was profiled by our friends at Patient Power for all the incredible work she has done, and is doing for the entire blood cancer community. We love her work on raising awareness for clinical trials.
One of the most important things to Michele was helping people understand how clinical trials work, like the phase II trial she participated in, emphasizing that patients “are getting tomorrow’s treatment today,” she said. Clinical trials are at the forefront of treatment options these days, offering state-of-the-art treatments. In cancer care, it is not placebo versus real treatment. Michele’s trial was a drug combination trial of two different treatment protocols simultaneously
Learn why Wonder Woman inspires her, advocating from the treatment chair, and so much more by clicking here to read the full article.
The Role of Estrogen-Based Hormone Therapy for Treating Prostate Cancer – Mar 29, 2021
Summary
AnCan’s Advisory Board Member, Richard Wassersug PhD, has almost 20 years of personal experience using high dose estrogen therapy to manage his recurrent prostate cancer. Dr. Wassersug is also an expert in hormone therapy; he is the lead author of ‘Androgen Deprivation Therapy- an essential guide for prostate cancer patients ane their loved ones’. And Richard has led many studies on the psycho-social aspects of hormone therapy.
In this interactive seminar, Dr. Wassersug discusses his personal experience on estrogen based therapy. He is joined by our AnCan Brains Trust, Herb Geller and Len Sierra monitoring audience quesions, as well as PCa patient and fertiltiy endocrinologist, Dr. Mark Perloe.
Chat Log
Peter Kafka (to Everyone): 5:04 PM: I have seen reference to using Estrodile in combo with Relugolix in uterine conditions to boost hemoglobin in women, For men like myself might Estrogen with Relugolix insteade of Lupron knock down my anemia?
Mark Perloe (to Everyone): 5:05 PM: Is there a role for SERMS selective estrogen receptor modulators. in dealing with prostate cancer?
Ronald Goldberg (to Everyone): 5:09 PM: For men, which serum estradiol test do you recommend: Estradiol or Estradiol Sensative? For the estradiol sensative test, what is the “Healthy Range” for a man using estradiol to mitigate the side effects of ADT?
Ronald Goldberg (to Everyone): 5:14 PM: Is monitoring serum bone turnover markers useful to monitor bone density when on ADT?
Mark Perloe (to Everyone): 5:23 PM: Does estrogen suppress adrenal androgen production. If not, what cut-off for T suppression should be the target.
Mark Perloe (to Everyone): 5:26 PM: Isn’t much of the T behavioral effect due to aroma taste activity converting T to E.
Richard Stanton (to Everyone): 5:30 PM: What are your thoughts on whether cycling monotherapy with estradiol patches, LHRH agonists, LHRH antagonists, and ARSI’s could or might avoid, inhibit, or delay castration resistance caused by adaptive or other resistance mechanisms?
Rick Davis (to Everyone): 5:36 PM: The male breast cancer patients HATE tamoxifen.
John Ivory (to Everyone): 5:42 PM: Can you talk a little more about the mechanics of wearing the patches (is it like a bandaid? where, how often you change them, Issues of it coming off in bath/swimming/shower, how the gel is used vs. the patch)?
Herb Geller (to Everyone): 5:45 PM: Randomized Controlled Trial Eur J Endocrinol . 2018 May;178(5):565-576. doi: 10.1530/EJE-17-1072. Epub 2018 Mar 16. Short-term effects of transdermal estradiol in men undergoing androgen deprivation therapy for prostate cancer: a randomized placebo-controlled trial Nicholas Russell 1 2 , Rudolf Hoermann 3 , Ada S Cheung 3 2 , Michael Ching 4 , Jeffrey D Zajac 3 2 , David J Handelsman 5 , Mathis Grossmann 3 2
John Ivory (to Everyone): 5:47 PM: Thanks, Herb. Here’s the link: https://pubmed.ncbi.nlm.nih.gov/29549104/
Patrick (to Everyone): 6:00 PM: What level does the estrogen have to be at to suppress the testosterone?
ALFRED LATIMER (to Everyone): 6:01 PM: I may be the only one here that is on estrogen. I wear three .1 patches at a time and change one patch per day. My testosterone levels and estrongen levels stay fairly consistant. I also take avodart. This combo kept my psa lees than 0.1 for almost 10years. My patches are on my upper legs Has Richard used avodart in combination?
ALFRED LATIMER (to Everyone): 6:04 PM: Could Richard repeat the discussion of not using estrogen if you have a BRAC 1 or 2 mutation.
Gary (to Everyone): 6:10 PM: When is the PATCH study likely to be done and the data published?
Herb Geller (to Everyone): 6:12 PM: Transdermal oestradiol for androgen suppression in prostate cancer: long-term cardiovascular outcomes from the randomised Prostate Adenocarcinoma Transcutaneous Hormone (PATCH) trial programme. Langley RE, Gilbert DC, Duong T, Clarke NW, Nankivell M, Rosen SD, Mangar S, Macnair A, Sundaram SK, Laniado ME, Dixit S, Madaan S, Manetta C, Pope A, Scrase CD, Mckay S, Muazzam IA, Collins GN, Worlding J, Williams ST, Paez E, Robinson A, McFarlane J, Deighan JV, Marshall J, Forcat S, Weiss M, Kockelbergh R, Alhasso A, Kynaston H, Parmar M. Lancet. 2021 Feb 13;397(10274):581-591. doi: 10.1016/S0140-6736(21)00100-8. PMID: 33581820
Mark Thompson Rehoboth Beach DE. (Private): 6:27 PM: Thank you very much for having this discussion.
Rick Davis (to Mark Thompson Rehoboth Beach DE.): 6:28 PM: pleasure Mark – hope it is helpful
Rich Jackson (to Everyone): 6:36 PM: Webinar: The TALK – Inherited Mutations Register here: https://bit.ly/2Oq2YkG Wednesday, March 31 2021 @ 8 pm ET, 7 pm CT, 6 pm MT, 4 pm PT, 2 pm HI
Rick Davis (to Everyone): 6:36 PM: registration for webinar https://register.gotowebinar.com/register/3736798432724445452
Jackie Zimmerman, AnCan’s resident graphics guru/web designer and a Member of our Advisory Board, is a long time patient advocate for multiple conditions. She’s seen seen a lot in her 15 years ….. that just bests me by a year or so!
Now Jackie has written a very perceptive and insightful Blog Post on her website that is definitely worth a read if you consider yourself a Patient Advocate … and frankly even if you don’t!
I saw a Twitter thread recently from a friend and fellow advocate who was wondering what his future in patient advocacy looked like. I’ve seen these types of threads a lot over the years and I understand…I’ve been there. Maybe it’s the new set of Lion King socks I recently purchased, but I’ve been sharing this idea of the patient advocate circle of life a lot lately and now it’s time to share it with all of my advocate friends. Whether you’re new to advocacy, or you’ve been around the block a few times, take a peep. Let me know what you think.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Mar 23, 2021
Editor’s Pick: Cicadas … no just kiddin’! Nothing outstanding this week unless your intrigued by botox use for bladder urgency. (rd)
Topics Discussed
Bladder issues long after PCa Tx; rectal metastasis; Orgovyx in action; what next – Provenge, enz, daro?; Cicadas … don’t ask!; supplements – bromohexene and phenylisithiocyanate … don’t ask again!!; livr issues from hormone therapy;low dose abi w. food; we question 4 mo HT for 4+4 recurrence; blood count discussion; exercise, exercise, exercise.
Chat Log
….. Apologies but the Chat file did not save on my laptop this week – perhaps because I joined via the Web rather than my desktop. Will know for future!
Hi-Risk/Recurrent/Advanced PCa Virtual Support– Men & Caregivers Recording, Mar 15, 2021
Editor’s Pick:Treating recurrence immediately versus waiting for PSA to rise for a meaningful scan! (rd)
Topics Discussed
Well educated denovo Mx man visits us first time; treat vs scan for PCa recurrence; artificial urinary sphincter surgery and recovery; denovo Mx Dx – chemo vs 2nd line HT; using Estradiol; detecting Circulating Tumor Cells and their analysis; IMRT vs PBRT; long-term management … keeping the disease in check; metallic taste from chemo
Chat Log
John Ivory (to Everyone): 5:17 PM: https://www.mskcc.org/cancer-care/doctors/borys-mychalczak#about-me
Joel Blanchette (to Everyone): 5:50 PM: PSMA PET locations: Columbia University (PYL) https://clinicaltrials.gov/ct2/show/NCT03824275 NIH-18F-DCFPyL PET/CT in High Risk and Recurrent Prostate Cancer https://clinicaltrials.gov/ct2/show/NCT03181867 NIH-18F-DCFPyL PSMA- Versus 18F-NaF-PET Imaging for Detection of Metastatic Prostate Cancer https://clinicaltrials.gov/ct2/show/NCT03173924 Mayo Clinic https://www.mayo.edu/research/clinical-trials/cls-20449461 Memorial Sloan Kettering https://clinicaltrials.gov/ct2/show/NCT03204123 UCSF https://www.cancer.gov/about-cancer/treatment/clinical-trials/se… https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2019-01394 University of Iowa https://clinicaltrials.gov/ct2/show/NCT03822845 University of Michigan https://clinicaltrials.gov/ct2/show/NCT03396874 Moffitt (PYL-PSMA-PET) https://clinicaltrials.gov/ct2/show/NCT03495427 University of Alabama https://clinicaltrials.gov/ct2/show/NCT04086966 Case Western University https://clinicaltrials.gov/ct2/show/NCT02978586
Rick Davis (to Jim Marshall – Alexandria, VA ): 6:07 PM: Jim – please make sure that Chris understands the difference between the 2 groups. Men with low/intermediate disease are welcome BUT they can get freaked out by hearing the discussion in this group. From Chris Veblen ….. and he is in the database already: Chris Veblen on the West Coast. My email is Veblencf@hcc.net. I’m Medium Not Acute or Metz or recurring. Looking forward to the email. Thanks.
Peter Kafka (to Everyone): 6:21 PM: Mike may want to get genomic/genetic testing results before embarking on Chemo, just in case he needs a platinum chemo.
John Ivory (to Everyone): 6:25 PM: https://www.mcw.edu/departments/medicine/divisions/hematology-oncology-cancer/doctors/giever-thomas-a-do
John Ivory (to Organizer(s) Only): 6:30 PM: Mike’s docs long name might be https://www.uwhealth.org/findadoctor/profile/christos-kyriakopoulos-md/9675
Peter Kafka (to Everyone): 6:42 PM: We have a 5th monday this month on the 29th. How about Wassersug and Estrodial in two weeks.
Jake Hannam (to Organizer(s) Only): 6:43 PM: good idea
Jeff Marchi (to Everyone): 6:44 PM: yes
Jake Hannam (to Organizer(s) Only): 6:44 PM: yes
kang (to Everyone): 6:44 PM: yes
Rick Davis (to Everyone): 7:01 PM: IMRT vs PBRT http://prostatecancerinfolink.net/2012/02/01/first-directly-comparative-data-question-safety-of-pbrt-vs-imrt/
Alan Moskowitz (to Everyone): 7:11 PM: Guys, I have to leave now. thanks for the guidance tonight.
Rick Davis (to Everyone): 7:19 PM: https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/taste-changes
Len Sierra (to Organizer(s) Only): 7:20 PM: Gotta go, guys. Good session!
Peter Monaco (to Everyone): 7:21 PM: Good night gents!
Rick Davis (to Everyone): 7:23 PM: taste ….. https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/eating-problems/taste-smell-changes.html
Hi-Risk/Recurrent/Advanced PCa Virtual Support– Men & Caregivers Recording, Mar 9, 2021
Editor’s PickNo real pick – just lots of doubles this week – from 2 men with ‘strange’ disease to relugolix, Provenge, and American Ginseng all coming up twice! (rd)
Topics Discussed
Dx young w ‘strange’ disease, it comes back and is treatable; relugolix/Orgovyx now and later in the meeting; recurrence shows in bladder neck; intraductal/ductalcell discussion; HT induced anemaia; Covid & walking pneumonia; Provenge now and again later; Jobert syndrome; STAMPEDE re-analysis; men produce PSA in different amounts; American ginseng now and again later; treating hot flashes; Lu177 PSMA trial participant; more chemo; Artificial Urinary Sphincter procedure
Jake Hannam (to Organizer(s) Only): 5:04 PM: Dr. Peter Van Veldhuizen’s treatment focus for the past 25 years has been genitourinary cancers. He has been actively involved in the development and participation of local and national clinical trials to find new treatment alternatives for these tumor types. He also has a special interest in cancer survivorship and quality of life issues.Dr. Van Veldhuizen ensures patients are fully educated on their diagnosis and actively involved in treatment decisions. His goal is to help patients have some control over their cancer diagnosis and treatment in an effort to return to life as normal as possible.Dr. Van Veldhuizen joined the Wilmot Cancer Institute faculty in 2020. He serves as the Director of Genitourinary Medical Oncology.
Len Sierra (to Everyone): 5:11 PM: Can anyone recommend a reliable supplier of American Ginseng?
Ben Nathanson (to Everyone): 5:12 PM: American Ginseng is going to be my question tonight, too
Herb Geller (to Everyone): 5:21 PM: There is a list on the Maryland web site of dealers who are licensed to harvest ginseng in MD. I am not sure about other states
Jefferson Duryee (to Everyone): 5:22 PM: has any one done provenge ?
Rick Davis (to Everyone): 5:24 PM: As said, stick to Wisconsin Ginseng
Mark Thompson Rehoboth Beach DE. (to Everyone): 5:24 PM: Thank you all very much for being here for support for men like myself with advanced prostate cancer. I will definitely be back. Thank you all very much.
Jefferson Duryee (to Everyone): 5:25 PM: I believe it takes up yo five hours to collect sample to be sent for processing. i wonder how long it would be to have it put back ?
Len Sierra (Private): 5:25 PM: Have you ever tried it, Rick?
Rick Davis (to Len Sierra): 5:26 PM: nope! Rob swore by it
Jefferson Duryee (to Everyone): 5:28 PM: I understand but it can not hurt can it
Len Sierra (Private): 5:29 PM: Good enough for me!
Jefferson Duryee (to Everyone): 5:30 PM: how long does it take to put it back in ?
Rick Davis (to Jefferson Duryee): 5:30 PM: Jefferson – this is a longer conversation. We’ll try to bring it up in the Group.
Jake Hannam (to Organizer(s) Only): 5:40 PM: liverish [liv-er-ish] adjective: resembling liver, especially in color. having a liver disorder; bilious. disagreeable; crabbed; melancholy: to have a liverish disposition.
Rick Davis (to Everyone): 5:41 PM: disagreeable …. that’s me!
