Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, Apr 19, 2021
Editor’s Choice: Lively discussion on mental health brought on by treatment, especially in the Chat. And later on, hot & cold tumors (rd)
Topics Discussed
Recurrence 5 years after RP; recurrence after brachy + IMRT; Provenge; Caregiver discusses depression and anxiety; prostate in teh bladdernech impacts RT choice; 2nd opinion from Dr. Morgans may change treatment; Xgeva dosing; hot vs cold tumors impact immunotherapy; end of chemo in sight; Lu177 PSMA working; cyclophosphamide; HT holiday appears over
Chat Log
Bruce Bocian (Private): 5:04 PM: Wearing my new T-shirt tonight!
Rick Davis (to Bruce Bocian): 5:06 PM: I see …. nice job! Give it a plug …..
Bruce Bocian (Private): 5:06 PM: I did before you came on.
Len Sierra (to Everyone): 5:26 PM: Antonarakis and Denmeade
Jake Hannam (to Organizer(s) Only): 5:29 PM: CT and bone scan will probably be redundant if he can get the PET/CT approved
Pat Martin (to Everyone): 5:42 PM: Good night, all. See you next week
Jeff Marchi (to Everyone): 5:45 PM: no CT or bone scan
Alan Dibble (to Everyone): 5:46 PM: Alan does not wish to ask how everyone deals with the emotional aspect of this disease. He had prostate removed, radiation therapy and now on chemo, plus injections of eligard. (Cancer spread to hips and femur after 1 year after radiation).. He goes through much anxiety and depressions. He is 69 and was diagnosed at 56 years of age. He does not wish to speak. I’m getting involved on his behalf. I’m his wife of 20 years.
Jake Hannam (to Organizer(s) Only): 5:50 PM: Alan may wish to join Speaking Freely
Jake Hannam (to Everyone): 5:56 PM: Venlafaxine is used to treat depression. It may improve your mood and energy level, and may help restore your interest in daily living. Venlafaxine is known as a serotonin-norepinephrine reuptake inhibitor (SNRI).
Tad (to Everyone): 5:57 PM: venlafaxine = Effexor (er)
John Ivory (to Everyone): 5:57 PM: Many people use the brand name for venlafaxine, which is Effexor XR
Rick Davis (to Everyone): 6:00 PM: Let’s not push venlafaxine – we are not expert enough to do that! We have expertise in PCa – we don’t have expertise in mental health. And we know better how men respond to the PCa drugs.
Tad (to Everyone): 6:07 PM: Ok….. all I meant. isthat I have experience in mental health
John Ivory (to Everyone): 6:08 PM: Are you a physician or a therapist, Tad?
Tad (to Everyone): 6:08 PM: A lifetime of personal experience. Are there physicians here for prostate? I’m just offering help like others are
Rick Davis (to Everyone): 6:09 PM: an SSRI can effect one person well and not another. They may need an SNRI.
Tad (to Everyone): 6:10 PM: yep or maoi……or I had shock treatments, etc etc etc. just like there are generalities for prostate, there are generalities with mental….general places to start. Bipolar type 2 since 1988. Been in psych hospitals many times. Electric shock treatments. Every med there is. Best dr’s in the country. This cancer stuf has been. awalk in the park compared to having. alife with. a major mental illness. Haven’t been back here for over a year. Finally was able to get back here tonight…..but this makes me depressed. So I’ll leave. Have a nice night.
Dennis McGuire (Private): 6:24 PM: Hi Rick, Is Dr. Morgans leaving Northwestern ? Heard the end of that conversation. Thanks
Rick Davis (to Dennis McGuire): 6:24 PM: Yup – early July. She’s going to Dana-Farber.
Dennis McGuire (Private): 6:26 PM: Sorry to hear that. Great hire by Dana-Farber ! She is a Superstar. I remember she has a history with Dana-Farber in her earlier days
Rick Davis (to Everyone): 6:36 PM: https://www.fiercebiotech.com/research/epizyme-s-ezh2-blocker-boosts-immuno-oncology-response-prostate-cancer-models Tazverik
Vincent Wilmot (to Everyone): 6:38 PM: Thanks all. Have to jump off now. Will stay in touch.
Jake Hannam (to Everyone): 6:38 PM: Mark your calendars for what AnCan expects to be a humdinger of a webinar on Thursday, April 29 at 8 pm Eastern. Advisory Board Member and Co-Director of the Parker Institute for Cancer Immunotherapy at UCSF, Dr. Larry Fong, will answer “Will Immunotherapy Change Your Prostate Cancer Treatment?” . Register at https://bit.ly/3thuPmq to learn how Superman came to visit Larry!
Ken (to Everyone): 6:41 PM: Got to go… pilots telling me turn off electronics
Jake Hannam (to Everyone): 6:42 PM: Sorry. Can’t attach the flier. See our Facebook page: https://www.facebook.com/answercancer/photos/a.1872701729640708/2908943646016506/
Bill Franklin (to Organizer(s) Only): 6:43 PM: I’ve got to drop guys. Need to help my son finish up a little bit of homework so he can get to bed at a reasonable time. Take care all.
Jake Hannam (to Everyone): 6:58 PM: dexamethasone (1 mg/day in the evening) with cyclophosphamide (50 mg/day in the morning). Zofran
Ted Healy (to Everyone): 7:02 PM: Got to go folks, thank you all!
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
Editor’s Pick Terry is totally intimidated by ADT – we gently bring him around….. and a very active and informative Chat this week! (rd)
Topics Discussed
BiTE explanation; recurrent disease handled by uro – switch??; don’t let ADT scare you away; no buffer when restarting ADT after intermittent HT; radiation cystitis; clinical trial leads to Axumin and PSMA scan; exercise and hi-risk/rec/adv PCa; CT scan turns up lung modules – what next??; B12 deficiency; different PSA assays give different results
Chat Log
Mark Perloe (to Everyone): 4:05 PM: Can anyone briefly comment about AMG 160 and AR-110?
Mark Perloe (to Everyone): 4:19 PM: AR110 attaches to the androgen receptor and destroys the receptor. ie, more effective version than enzalutamide and it’s siblings.
Mark Perloe (to Everyone): 4:19 PM: Does it bypass PD1-PDL1?
Dennis McGuire (to Everyone): 4:25 PM: is AR-110 the Arvinas Trial ?
Herb Geller (to Everyone): 4:28 PM: ARV-110 is not a BiTE – it does degrade the receptor.
Herb Geller (to Everyone): 4:28 PM: ARV-110 does not engage the immune system.
Mark Perloe (to Everyone): 4:29 PM: YUP, totally different type of med. It binds to and destroys the androgen recpetor. So maybe like enzalutamide, but would seem to potentially prevent AR mutations that might lead to CR.
Len Sierra (to Everyone): 4:31 PM: I wonder if that could simply accelerate AR-independent tumor growth.
Dennis McGuire (to Everyone): 4:31 PM: If failed on Enzalutamide, can you do ARV-110 ?
Mark Perloe (to Everyone): 4:32 PM: It is only in a clinical trial, but I think that is a pre-requisite.
Ancan – Jake Hannam (to Everyone): 4:36 PM: You can also dial in using your phone. United States +1 (646) 749-3129 Canada +1 (647) 497-9373 Australia +61 2 9091 7603 Access Code: 222-583-973
Mark Perloe (to Everyone): 4:42 PM: I bought elastic bands online for exercise for only $13. Fred Hutch in Seattle has a series of youtube videos on exercises to do at home if you are dealing with prostate cancer. It makes a big difference. I also bought a set of dumbells, but they are hard to find now. I’ve got a Peloton bike on the way.
John I (to Everyone): 4:49 PM: I, too, bought bands, had adjustable barbells, and recently acquired a rowing machine for cardio. The rowing machine is great–stands on end when not in use for a smaller footprint & while mostly for legs & core, also exercises arms
Mark Perloe (to Everyone): 4:51 PM: The ADT offers different options. I was knocked flat at first, but after a month or two, I got used to it. I don’t think I’d win a stamina contest, but ADT+Zytiga has gone very well and should be done in 3-4 months. If Zytiga is an issue, you could consider one of the androgen receptor blockers. Darolutamide appears to have the least mental fog.
Mark Perloe (to Everyone): 4:59 PM:(Oral Antagonist) Is it covered by insurance? It will likely be outrageiously expensive. But an oral antagonist would be great. We hoped to find that for our IVF patients.
AnCan – rick (to Everyone): 5:00 PM: That’s one of their target markets,
Dr.M Mark Perloe (to Everyone): 5:00 PM: Egalolix is an oral antagonist, but it is not as potent.
Len Sierra (to Everyone): 5:01 PM: Herb, I see no news on relugolix FDA approval. Do you have a link?
Herb Geller (to Everyone): 5:06 PM: Actually what I read was that the FDA has a committee set up to review the application this month with likely approval. So it’s not approved yet, sorry.
Mark Perloe (to Everyone): 5:02 PM: Terry, you may wish to get a prescription for cialis, even if you don’t have a partner. It helps preserve for the future.
James Barnes (to Everyone): 5:12 PM: Mark, How often should a typical patient take Cialis while on ADT?
Mark Perloe (to Everyone): 5:16 PM: I’ve ended up getting GoodRx Gold and most drugs are far less than using Medicare part D. Unfortunately, the cost between pharmacies can vary widely, so I end up doing GoodRx mail order for some, CVS for others and Kroger Pharmacy as well. You really have to look for each medication.
John I (to Everyone): 5:18 PM: I’ve got to run early tonight. Have a great week, everyone
alan moskowitz (to Everyone): 5:18 PM: Just joined,
John A (to Everyone): 5:38 PM: James: 5mg once a day was advised for me
Peter Kafka (to Everyone): 5:40 PM: Getting a son/daughter/grandchild involved in the exercise regimen
alan moskowitz (to Everyone): 5:43 PM: Suggest a simple activity (walking with someone), that is a low barrier. First 2x per week, then increase length, pace, frequency. Once that becomes somewhat of a habit, then introduce simple weights / or resistance bands / pushups etc. The key is repetiion. Going to a gym, or getting personal trainer at home might work for some, but for me it presented as a high barrier and too easy for me to give an excuse not to do that.
Regina Hoover (to Everyone): 5:46 PM: I have a book full of PR exercises we started. including 5 lb weights and fast walking so far 3 days a week. I’m working on a group of exercises focusing on stretching to speeding up walking til get slightly breathless. go from there.
Len Sierra (to Everyone): 5:45 PM: Case report of ductal carcinoma of prostate responding to docetaxel. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2845672/pdf/cuaj-2-e50.pdf
David Muslin (to Everyone): 5:51 PM: Frank Fabish, What’s the treatment for the nodules you mentioned? Thank you Frank
Another big meeting – 27 with several new folks …. rd
Editors Pick – right at the back end, you’ll hear some outstanding news from one of our regulars with a BRCA2 mutation!
Topics Discussed:
Treating advanced neuroendocrine PCa; after 8 years, is IHT an option?; warding off the Black Dog; adverse post-RP diagnosis for 50 yr old; Procrit during chemo; what PSA level to start HT on biochemical recurrence; gynecomastia; dealing with hot flashes; is COVID19 an immuno-stimulant?; BRCA2 success with PARP-I
Chat Window Links
Paul Freda (to Everyone): 5:55 PM: Ben Tran comes up in Google Melbourne as an oncologist. JFYI.
Joel Blanchette (Private): 6:25 PM: As far as I have been told by a guy waiting to get into a PSMA PET Scan at NIH, that they have paused the clinical trials at NIH due to the Coronavirus.
Allen (to Everyone): 6:30 PM: This is Carbone’s study of hypofractionated salvage radiation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3064951/
Jess5 (to Everyone): 6:31 PM: Thank you everyone. And positive vibes for you. 👊🏼💙
Allen (to Everyone): 6:53 PM: Tamoxifen vs Chest Radiation https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(05)70103-0/fulltext
Allen (to Everyone): 7:08 PM: Acupuncture for hot flashes https://www.redjournal.org/article/S0360-3016(10)00124-0/fulltext
We often speak about genomic testing to identify mutations! Why? – because identifying a mutation may open the possibility of using a ‘precision medicine’ that may come into play if you have difficult disease to treat …. for any type of cancer and other conditions.
Our Speaking Freely moderator, Rich Jackson, recently attended a support group meeting that received a presentation from INVITAE , a genomic testing lab that offers a comprehensive germ line or inherited genetic mutation test. Their tests may be offered at no cost depending on your disease and its demographics. For a full list of currently sponsored (free) tests, please visit https://www.invitae.com/en/sponsored-testing/ . You can also call Invitae at 800 436 3037.
Rich writes:
INVITAE is offering hereditary genetic (germ line) testing with a maximum out of pocket expense of $250.00 – and the cost could be $0.00. The genetic testing must be initiated by the patient who also names a doctor’s office that controls their Personal History Information. It is saliva based and tests for 47 specific markers including BRCA and Lynch Syndrome markers. Results are returned to the doctor to be communicated to the patient. INVITAE also provides access to genetic counseling.
Currently, prostate cancer patients qualify for free genetic testing provided they are Gleason 7 or greater at diagnoses (as may other conditions like pancreatic cancer and chronic kidney disease – see above for more information. rd).
INVITAE creates a ‘tag number’ to identify the sample that references back to the medical office, but for their purposes the information is anonymous. The company gathers large pools of patients for a given condition that they can then market to drug companies with the purpose of identifying prospects for clinical trials based on genetic markers.If a patient is a candidate, their doctor’s office will be contacted.
As explained by the regional manager w.r.t. prostate cancer:
‘A drug company would have a new drug to trial which they thought would work better with certain genetic markers. The company would contact INVITAE looking for men that matched. INVITAE would check their database, locate the identifiers of men that matched and contact the doctors office with the information. The doctor would contact you and pass on the information and how to contact INVITAE for additional information.’
