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!
On March 3rd, we had the esteemed Dr. Darryl Leong (Cardiologist and Director of the McMaster University and Hamilton Health Sciences Cardio-Oncology Program) at our Active Surveillance Virtual Support Group.
Dr. Leong, explained to men on active surveillance that his work on men on AS makes sense because many of these men are at greater risk of dying from cardiovascular diseases—such as heart attacks and strokes—than they are to die from prostate cancer. He said there is strong evidence for the benefits of exercise to reduce CVD risk. He said the research on a diet is not as strong because there are few randomized studies. However, there is recent research from MD Anderson that the Mediterranean diet may have some benefits for men on AS. Long warned that many cardiologists are now questioning the long-accepted practice of taking one baby aspirin a day. He also answered questions about cardiovascular disease issues in men with advanced prostate cancer who are taking hormonal therapy.
We want to thank Dr. Leong for answering so many questions!
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.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Mar 2, 2021
Editor’s Pick: We rarely discuss anesthesia – but we did tonight. Along with estrogen treatment! (rd)
Topics Discussed
Recurrence with multiple spots; signet cells; artifical urinary sphincter; anesthetic choices; estrogen therapy; elecrostimulation for incontinence; i-131 PSMA radionuclide trial; abscopal effec from spot RT; regulating your own LHRH; relugolix; Flomas and shortness of breath; metformin & statins
Chat Log
Jake Hannam (to Everyone): 6:35 PM: Genomic Loss of Heterozygosity (LOH) or genomic instability is often related to defective homologous recombination repair mechanisms.
Herb Geller (to Everyone): 6:38 PM: I did find that BRCA mutations can lead to LOH.
AnCan – rick (to Organizer(s) Only): 6:41 PM: aggressive Tx
Mark Perloe (to Everyone): 6:44 PM: But loss of heterozygosity is of uncertain significant unless it relates to BRCA2
Herb Geller (to Everyone): 6:45 PM: That’s true – BRCA can lead to LOH, but LOH without BRCA is not informative/
Mark Perloe (to Everyone): 6:45 PM: I did trelstar and abiraterone. It was rough at first, but with exercise it was quite tolerable. Darolutamide does not cross the blood brain barrier, so how one feels is less disrupted. I agree that over agressive treatment may lead to earlier progression to CR status or neuroendocrine disorder. Deferring immune approach without BRCA2 seems to be outside the standard of care. Is Darolutamide covered to the same extent as other receptor blockers?
Herb Geller (to Everyone): 6:49 PM: Darolutamide may have a more favorable profile of actions.
Carlos (to Everyone): 6:56 PM: signet cells
Carl Forman (to Everyone): 6:58 PM: Is anyone on Relugolix (Orgovyx) as a replacement for, or instead of, Luporn/Eligard? It is a pill instead of an injection, and lower risk of cardiovascular events.
Herb Geller (to Everyone): 6:59 PM: It is a histologic variant of adenocarcinoma that responds very similarly to hormone therapy.
John Ivory (to Everyone): 6:59 PM: I’ve been on Relugolix for just a week instead of Lupron.
Peter Kafka (to Everyone): 7:01 PM: I am not sure Relugolix is covered by insurance yet. At least that is what I have heard. Perhaps it is too new.
John Ivory (to Everyone): 7:02 PM: I’m on Medicaid (not Medicare) in Illinois. Was surprised I was covered. Expected not to be. Maybe since it avoids the need for a nurse for the injection?
Mark Perloe (to Everyone): 7:08 PM: Propofol is great. It is just not an at home disease. We loved it for egg retrievals. You won’t remember going to sleep. They tell you it might burn, and the next thing you are ready to get dressed.
Carlos (to Everyone): 7:10 PM: No one complains about Prpopfol or Versed either.
Herb Geller (to Everyone): 7:13 PM: For me, I always taught that you taste almonds and then go to sleep.
Jon McPhee (to Everyone): 7:13 PM: What is the stuff they are discussing?
AnCan – rick (to Everyone): 7:14 PM: estradiol
Carlos (to Everyone): 7:14 PM: Estrogen
Jimmy Greenfield (to Everyone): 7:17 PM: Wassersug said exactly this
Carlos (to Everyone): 7:20 PM: Yes Wasserburg is the source.
ALFRED LATIMER (Private): 7:20 PM: Dr E was very dismissive of my use of estrodiol. Said it was “old school”.
Jimmy Greenfield (to Everyone): 7:22 PM: everyone should know Wassersug is cool, very kind and approachable you can easily get his info he answers email
Carlos (to Everyone): 7:23 PM: Does anyone know a doctor that works with estrogen? I would like to explore that further. Are you using a patch?
AnCan – rick (to Everyone): 7:35 PM: Salivary Glands https://www.prostatecancer.news/2021/01/avoiding-radiation-damage-to-salivary.html
Carlos (to Everyone): 7:40 PM: UCLA and SFO are using gallium-68. Gallium-68 is for the PSMA PET scan. Oligometastatic is 5 or less metastatic lesions.
Herb Geller (to Everyone): 7:46 PM: The definition of oligometastatic is not so precise. Others use 3 and some would go further than 5.
Carlos (to Everyone): 7:50 PM: You are correct. Five is the cut off for getting focal radiology treatment.
Mark Perloe (to Everyone): 7:52 PM: Or you treat primary and the oligo mets respond. Dr. Kishan did not believe it exists in prostate
Mark Finn (to Everyone): 8:12 PM: folks – got to go. Thanks for an informative session.
Frank Fabish (to Everyone): 8:13 PM: I am checking off. See you next week. I have my 4th Chemo next Thursday.
Jon McPhee (to Everyone): 8:18 PM: On Flomax I noticed incidences of low blood pressure when exercising or hiking in hills. Have gone to Flowmax every second day and that helps
Mark Perloe (to Everyone): 8:18 PM: Take CO Q10 on statin
Herb Geller (to Everyone): 8:18 PM: I think I’ll try that – I am peeing fine, so I might ot need it at all.
Skip Maniscalco (to Everyone): 8:18 PM: What is too much Metformin?
Mark Perloe (to Everyone): 8:19 PM: I take 1000 mg bid\
Skip Maniscalco (to Everyone): 8:19 PM: Any difficulty? That is what I take
Did you know? It’s Multiple Sclerosis Awareness Month! We love our Team MS here at AnCan, and we love the MS community. I have such a soft spot for Dan and Jen Digmann. I’ve learned moderating tips that I use in my groups, and had the utmost pleasure of working with them to produce The TALK – MS. We loved this piece (Embracing Inclusion in Multiple Sclerosis Research) from Jen from their blog A Couple Takes on MS so much that we just had to share. We are in 100% favor of supporting inclusion everywhere in health, and love how Jen explains the importance. Thank you so much, Dan and Jen!
No one likes to be left out. Feeling excluded is the worst. It leaves you feeling such doubt. Wondering why was I ignored or overlooked? More often than not, it’s not you, it’s them. Seriously! They’re the problem, not you.
Speaking of problems, I will do pretty much whatever it takes to figure out my life’s biggest problem: Multiple Sclerosis. I imagine most other people living with this chronic disease of the central nervous system feel the same way. MS is a horrible disease, and I want to fundraise, educate people and be included as part of the reason this mystery is one day solved and we find a way to stop MS.
Thankfully, we are getting closer. Over the past two decades, researchers have made significant progress in understanding MS and even have developed numerous new treatments to slow its progression.
But, remember my earlier comment about how bad it feels to be left out? Imagine being a person of color and learning that you weren’t represented in the clinical research that led to the treatment’s approval.
That’s how it can feel for minorities who historically have been underrepresented in MS research.
MS affects everyone who is living with it differently (just look at Dan and me). The age of onset, how fast the disease progresses, and the severity of symptoms vary widely from person to person.
This is why it is so important that Genentech initiated the first-ever clinical trial that focuses exclusively on broadening our current understanding of MS disease biology among people who identify as Black or of African descent and Hispanic/Latinos living with MS. The Phase IV CHIMES study, or CHaracterization of ocrelizumab In Minorities with multiplE Sclerosis, currently is enrolling participants across the United States.
Genentech reports that minority communities living with MS, including people who identify as Black or of African descent and Hispanic/Latinos, experience more severe symptoms and a faster progression of the disease than their Caucasian counterparts. People who identify as Black or of African descent also have twice the risk of MS compared to Caucasians, while people who identify as Hispanic/Latinos have half the risk.
Such underrepresentation leads to limited data on the progression of MS, the effectiveness of treatment, and its genetic underpinnings. It also excludes people living with this condition from an opportunity to receive treatments that have the potential to make a difference.
Dan and I were thrilled to see that this effort includes the perspective of two powerful voices in the MS community: Dr. Mitzi Joi Williams, a neurologist at Joi Life Wellness MS Center, and our friend Damian Washington, an MS patient leader and vlogger we recently chatted with for our 7 Questions with A Couple feature.
Hear what they have to say about this important work:
For information on our peer-led video chat MULTIPLE SCLEROSIS VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
AnCan’s own highly qualified research scientists, Herb Geller and Len Sierra, attended the mid-February virtual GU (Genitourinary) ASCO on our behalf. Much gratitudeGents!
Here’s their 45′ presentation to our Group made on Feb 23 before our regular support group meeting. It covers their handpicked highlights of the Conference including a review of the best medical presentation Herb has ever heard(!!!) and a new oral chemotherapy drug for advanced prostate cancer.
