Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 25, 2022
We’ll start by talking about NEXT week!!!
The schedule is a little strange …., Monday Jan 31, AnCan welcomes Dr. Rachel Rubin answering Jimmy G’s questions during an intimacy/sexual dysfunction webinar. It’s free but you’ll need to register at: https://register.gotowebinar.com/regi…
… AND our meeting will be on Tuesday, Feb 1 @ 6 pm Eastern . That’s because Feb and March mess up our Meeting Calendar, so we have to make adjustments to avoid consecutive nights!
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 long should you stay on HT prescribed as adjuvant to radiation? This is controversial and tricky – not just your disease risk but own preferences come into play (rd)
Topics Discussed
Likely denovo Mx gent seeks guidance; how long should you stay on adjuvant HT; more on morphing; getting Provenge; TP53, PTEN and RB1 mutations; be sure to ask for NGS test results when your doc orders; enz + pembro fails; taxane and platinum based chemo; Radium223 as an option; Dr. A steps up to help; spot radiation; how well will PSMA curative Tx work?
Chat Log
John Ivory (to Everyone): 4:07 PM: PUBLIC SERVICE ANNOUNCEMENT: What would you do if you found out that you had a rare, chronic disease that affects your skin and weakens your muscles? Lisa Sniderman chose to integrate her disease into her writing and performing. Join Rick Davis as he hosts Solo Arts Heal tomorrow evening at 10:30 ET/7:30 PT https://ancan.org/solo-arts-heal/
George Rovder, Arlington VA (to Everyone): 4:19 PM: Genito-Urologic (GU ) Medical Oncologist.
John Ivory (to Everyone): 4:19 PM: Who is he seeing at UChicago?
Joe Gallo (to Organizer(s) Only): 4:31 PM: He should be careful that an administrator puts him far out on schedule
George Rovder, Arlington VA (to Everyone): 4:33 PM: PSMA Scan
Joe Gallo (to Organizer(s) Only): 4:33 PM: PSMA PET
George Rovder, Arlington VA (to Everyone): 4:33 PM: Gallium 68 or Pylarify,
Joe Gallo (to Everyone): 4:34 PM: PSMA PET
John Ivory (to Everyone): 4:35 PM: UChicago Stadler, Szmulewitz
Len Sierra (to Everyone): 4:36 PM: Dr. Russell Szmulewitz, (U Chicago)
John Ivory (to Everyone): 4:36 PM: Or at Northwestern, Vanderwheele. I’ve seen both Smulewitz and Vanderwheele–both are great docs
Larry Fish (to Everyone): 4:38 PM: I think too much detailed info – in general for new guys – focus on 3 main things to do – when guy taking complex notes will get lost later. Joe Gallo (to Everyone): 4:39 PM: cribriform intraductal
George Rovder, Arlington VA (to Everyone): 4:39 PM: Cribriform Intraductal
John Ivory (to Everyone): 4:39 PM: You can also watch the recording again on YouTube tomorrow, Tom M.
Chick Lindsay (to Everyone): 4:39 PM: Where find info on SBRT therapy, and does UMN-Mpls offer the SBRT radiation therapy?
Larry Fish (to Everyone): 4:41 PM: good to make sure guy gets 1,2,3, ABC , can’t handle too much at first – technically and emotionally…relistening may not emphasize what to do first, second and third and then do that – 1 get a good GU quarterback and see what he says, 2- get PSMA scan to find out what is going on where, 3- form a plan of action with MD , based on 1 and 2 and then “Take Action”. All the other stuff will follow …
Joe Gallo (to Everyone): 4:44 PM: Dr Mark Scholz. The Key to Prostate Cancer
Bruce Bocian (to Everyone): 5:03 PM: My PSA rose to .31 after RP 9 years ago, had a PSMA scan, nothing detected. Sought 3 opinions, all said HT not recommended under .5. I just finished Salvage Radiation, PSA dropped to .024, blew the doc away as he was expecting a smaller drop over a longer period.
Bob Smith (to Everyone): 5:57 PM: Given my rapid rise in PSA (14 to 44) in 40 days and the explosion in bone mets (approx 3-6 to about 25), am I taking excessive risk by delaying the Ra 223 while trying to get a timely ga 68 psma Pet which would require a trip to the mainland?
AnCan – rick (to Everyone): 5:58 PM: Bob …. You may be able to get an Axumin scan and maybe a Pyl scan on HI.
Mark Baldridge – Seattle (to Everyone): 5:58 PM: Is Lutetium 177 PSMA expected to be a game-changer in the future?
AnCan – rick (to Everyone): 5:59 PM: Mark … YES!
Peter Kafka – Ken Anderson (to Everyone): 6:03 PM: Pylarify is not available in Hawaii. I spoke to the company. Closest is California. Mot sure about Axumin. Might have to check their website – Blue Earth? I think.
Carl Forman (Private): 6:08 PM: I asked Tagawa about LU177, and he told me that it will not be a game changer as it will help some but not others
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 17, 2022
This was the second of our meetings where we reported on the PCF Retreat back in Oct/Nov. Session 2 can be heard at https://www.youtube.com/watch?v=eoFWeGbeGUA, and you can learn about everything from exercise to how your gut microbiomes may impact prostate cancer treatment.
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/
To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/
Editor’s Pick: Variant disease is much on my mind, and two of our guys who are likely variant, need help this week. (rd)
Topics Discussed
de novo MX currently under control; Dr. Morgental debunked; treatment controls PCa but not sciatica; cabazitaxel stabilizes disease at PSA of 120 – but is this the right Tx; just turned mCRPC so whats next for likely variant situation; abscopal effect; Provenge and 2nd line HT drugs; docetaxel as a long term option; choose a collaborative GU med onc as your QB; more Provenge – how important is tumor burden; is Quercetin something we need to know about?
Chat Log
Mark Perloe, MD Atlanta (to Everyone): 6:06 PM: Wanted to share that Northside Hospital in Atlanta has recently started Pylarify PET scans and has announced that they will have ViewRay MRI-LINAC
AnCan – rick (to Herb Geller): 6:24 PM: any abi or enz???
Peter Monaco (to Organizer(s) Only): 6:24 PM: Surprised he would get a drug holiday with bone mets present…
Robert McAleese (to Everyone): 6:43 PM: sorry I have to leave for a family emergency
AnCan – rick (to Len Sierra): 6:51 PM: Len – has cabazitaxel been shown to be non-inferior to docetaxel
Julian Morales-Houston (to Everyone): 7:03 PM: www.hopkinsconsults.org – Dr Epstein
Carlos Huerta (to Everyone): 7:04 PM: FYI, Mayo in Phoenix is now doing the PYL PET scan.
Stephen Saft (to Everyone): 7:05 PM: “Thanks for the link to Jonathan Epstein.
Len Sierra (Private): 7:06 PM: Not sure they were ever trialed Head to Head. But cabazi is only approved for 2nd line taxane where docetaxel failed. Of course, docs can prescribe off-label.
Joe Gallo (to Everyone): 7:07 PM: FYI also. Fox Chase CC in Phila is now enrolling for PSAM PET PYL
Carlos Huerta (to Everyone): 7:07 PM: I have to go. Thanks for the summaries.
Joe Gallo (to Everyone): 7:07 PM: PSMA 🙂
AnCan – rick (to Len Sierra): 7:08 PM: K …… I don’t think it is any less effective than docetaxel
Stephen Saft (to Everyone): 7:08 PM: Thanks to Joe Gallo. I knew what you meant.
Chick Lindsay (to Everyone): 7:12 PM: I need to leave tonight’s meeting. Thank you for making the time for me tonight. Thanks for the presentations, and the updates. Chick
Frank Fabish (to Everyone): 7:17 PM: Guys got to leave. This sciatica is killing me.
Len Sierra (to Everyone): 7:21 PM: https://pubmed.ncbi.nlm.nih.gov/33451978/ This is a Phase 2 study of Provenge with or without Xofigo in mCRPC. Conclusion was that the combo was superior to Provenge alone. Bonus finding: PSA50 decline was seen in 31% of patients vs. 0% in monotherapy.
Stephen Saft (to Everyone): 7:48 PM: I am going to say thank you and good night.
Gregg (to Everyone): 7:49 PM: Thanks much everyone. Have to leave. Gregg Nolting.
Michael Chandler (to Everyone): 7:53 PM: Thank you all, best health.
Len Sierra (Private): 7:54 PM: Seems to be in-vitro studies only, but is interesting. Not in the clinic.
Herb Geller (to Everyone): 7:55 PM: Those papers are not from NIH. They are from research groups in China and Atlanta. They are very basic science papers. Quercetin has been the subject of investigation for some time.
Mike Phillips & Tomi (to Everyone): 7:55 PM: Thank you!
Cal Van Zee (to Everyone): 7:56 PM: logging off now. Positive throughts to everyone.
What do oncologists have against palliative care ….?
If you regularly attend AnCan’s virtual chat support groups, you are sure to know that whatever the condition, we frequently recommend palliative care … almost anytime and place we can.
And NO – palliative care is not about dying – it’s about preserving Quality of Life. Some of the smarter institutions have figured that changing the name to an acronym like Symptom Management Service at UCSF or Supportive Care at Memorial Sloan Kettering may account for greater acceptance and higher quality. It may also explain why these two institutions are among the best in the biz. Others like City of Hope, that still keep Palliative in their name, struggle to make palliative care easily available to their patients.
A recent article in Hospice News reports that “Cancer Patients Often Not Referred to Palliative, Mental Health Care”. Amongst 240 surveyed oncologists, only 17% referred their patients to palliative care early in the disease process. Yet many studies show that the earlier a patient is referred to palliative care, the better the outcome – especially for cancer. On more than one occasion at the same NCCN hospital, AnCan has had to navigate a participant to self refer to palliative care in order to receive treatment. In one instance, this even involved the Chief Medical Oncologist.
Given the underpinning principle in medical ethics of ‘Do No Harm’, essentially embodied in the Hippocratic Oath, how can this be?
At AnCan, we have a theory, we see this as a control issue. For some oncologists, and maybe other specialties who might collaborate with palliative care too, they are uncomfortable sharing patient management with other docs in essential areas like palliating comorbidities. While palliative care physicians are required to stay up on developments in pain treatment, antiemetic (nausea) drugs, and other forms of supportive care, oncologists have their heads buried in cancer care.
AnCan is very fortunate to have Dr. BJ Miller, one of the foremost palliative care gurus in the US, on our Advisory Board. If you doubt that, BJ’s TED Talk is now up to 14.6 million views! Dr.Miller now practices his profession from his own organization, Mettle Health; his services have comforted several AnCan participants. So we thought we would ask Dr. BJ Miller for his view on an issue he has lived with for many years …..
” I think medical training is part of the problem, as is confusing messaging around what is palliative care. and i agree that a piece of the problem is related to control, and, related, misunderstandings about how palliative care works (ie, as an additional layer of support that makes the treating physician’s life easier as well as his patients’; not a service that will steal your patient away or somehow undermine your authority).
and then there’s the culture of medicine, where death is the enemy and suffering is just part of the cost of doing business; and where medical issues are taught as separate from the psychosocial and spiritual issues a patient faces.
lastly, medicine generally does not include the caregiver/family in the equation, where much of the suffering happens.” …….. Tx BJ!
Sharing patient management may not come naturally to many physicians, especially if not part of their institutional culture. At AnCan we say, let the doctor most specialized in each aspect of care take responsibility for it on behalf of the patient. When inappropriate doctors stand in the way, the patient suffers.
Of course, AnCan is a patient driven organization ….. we welcome a response from other docs to explain what we are missing!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 11, 2022
In 2021, almost 15,000 visitors watched 258,000 viewing minutes on AnCan’s YouTube Channel – THANK YOU! Learn more about AnCan in 2021at https://mailchi.mp/ancan/ancans-year
Savvy Co.op , a patient led research company, are seeking a very few men with metastatic, castrate resistant PCa who failed a 2nd line anti-androgen. It pays $110 for 60 min from home. For more details and to apply check https://gigs.savvy.coop/scpct/?r=ancan
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about our 11 monthly prostate cancer groups at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter at https://ancan.org/contact-us/
Editor’s Pick: We learn about a new insurance approved cancer rehab program; and we talk about how to prepare for IMRT and for Provenge. (rd)
Topics Discussed
GU med onc needed in WI area; getting germline (inherited) genetic testing; where’s Jake?; Valentine’s Intimacy Sexual Dysfunction Webinar on Jan 31; Savvy Coop needs a few good men; ReVital – a new PT rehab program; how to prepare for successful IMRT; … and to prepare for Provenge; PSMA scans; Lu177 combo treatments; HOXB13 mutation; 18 vs 24 mo. ADT; a strange abi history; ‘partial’ drug holidays and monotherapy HT
Chat Log
AnCan – rick (to Everyone): 4:21 PM: Emanuel Antonarakis, Masonic Cancer Center, U. of MN
Daniel Ford (to Everyone): 4:22 PM: Has anyone seen an instance where genetic profiling led to actionable (ideally successful) therapy?
Herb Geller (to Everyone): 4:23 PM: Abolutely. BRCA mutations can lead to treatment with PARP inhibitors.
Peter Kafka (to Everyone): 4:24 PM: I have tagged mutations and was treated with targeted therapies so far successfully. Several others on the call as well
Daniel Ford (to Everyone): 4:25 PM: So if no BRCA mutations then nothing useful? What are examples of targeted therapies?
Carl Forman (to Everyone): 4:26 PM: Genetic testing resulted in my being treated with a PARP inhibitor, Olaparib, due to my BRCA2 mutation. It kept my PSA undetectable for almost 2 years before it ran its course.
Len Sierra (to Organizer(s) Only): 4:28 PM: Dan, there are several mutations that suggest patients with PCa may respond well to immunotherapy.
Carl Forman (to Everyone): 4:30 PM: Also, genetic testing can identify whether you are MSS or MSH and have either a high or low tumor burden. If MSH and high tumor burden, use of Keytruda can be a viable option.
Cal Van Zee (to Everyone): 4:30 PM: the risk to your children is significant if you have BRCA mutations. If you have chldren you definitely want to know.
John Vandenberg (to Everyone): 4:31 PM: What is MSS and MSH?
Bill Franklin (to Everyone): 4:32 PM: Dan, Len Sierra has noted that there are several mutations that suggest patients with PCa may respond well to immunotherapy.
Carl Forman (to Everyone): 4:32 PM: microsatellite stable (MSS) or high (MSH)
George Rovder, Arlington VA (to Everyone): 4:44 PM: Genito Urinary (GU) Medical Oncologist
Alexa Jett (to Everyone): 4:56 PM: https://bit.ly/3qWKSWK Dr. Rachel Rubin Webinar – January 31st at 8 pm ET
Carl Forman (to Everyone): 5:04 PM: www.revitalcancerrehab.com
Len Sierra (to Everyone): 5:07 PM: Rehab Cancer only available in these states: Services are currently available in AZ, CA, GA, KY, MD, VA, DC, IL, ME, MN, MO, NJ, PA, TN, TX, WA, OH. Insurance coverage may vary based on provider.
Chick Lindsay (to Everyone): 5:10 PM: Thanks for this info. my brother can use this.
eric (to Everyone): 5:44 PM: Good night guy. Have to go but thanks for the knowledge, stay positive, and stay blessed. Talk to you guys next week!! We live to fight another day!!
AnCan – rick (to Everyone): 5:45 PM: right back at ya, Eric
Ben Nathanson (to Everyone): 5:45 PM: Thanks, Eric!
Chick Lindsay (to Everyone): 5:53 PM: Is Luteshim a chemotherapy?
Len Sierra (to Everyone): 5:53 PM: It’s a targeted radiotherapy. Radioligand therapy, more accurately.
Chick Lindsay (to Everyone): 5:54 PM: Thanks.
John Birch (to Everyone): 6:03 PM: Have to run. Appreciate the dialogues and info sharing tonight.
Jeff Wood (to Everyone): 6:05 PM: Good night to all.
Ken (to Everyone): 6:11 PM: Great
Chick Lindsay (to Everyone): 6:17 PM: Who is John’s Vandenberg’s doc?
AnCan – rick (to Everyone): 6:18 PM: Andrew Armstrong at Duke
Daniel Ford (to Everyone): 6:18 PM: Gotta run guys – thanks.
Cal Van Zee (to Everyone): 6:20 PM: First round chemo for me tomorrow. Trying mightily to not be afraid as I know many of you have already had the six rounds.
Len Sierra (to Organizer(s) Only): 6:23 PM: Good night, gents. Good job, Peter K!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 3, 2022
Here’s to a healthy 2022 for all – to learn more about what AnCan has achieved in the past 12 months, please visit https://mailchi.mp/ancan/ancans-year-… We also learned recently that in 2021 almost 15,000 visitors have watched 258,000 minutes in viewing time on our YouTube Channel – THANK YOU! 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/ To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/
This meeting was a little different to normal with more than 50 participants carried over from the PCF Retreat session https://www.youtube.com/watch?v=eoFWeGbeGUA We gave time to new participants, then opened the floor.
Editor’s Pick: It can be really tough getting good care in Canada. We also examine intraductal issues.(rd)
Topics Discussed
‘Young’ man with low level recurrence 4 years after RP; NJ gent needs to find a GU med onc; getting treated for progressive PCa in Canada is much tougher; younger man with intraductal Dx needs better guidance; intraductal conversation gets expanded; long-term chemo continues to hold the beast at bay!; reading PSMA scans can be challenging – but leads to a result.
Chat Log
Michael Chandler (to Everyone): 6:21 PM: what does chemical recurrence mean?
Pat Martin (to Everyone): 6:21 PM: how often is he getting his PSA checked? t
John Antonucci (to Everyone): 6:22 PM: it means your PSA comes back up Michael
Pat Martin (to Everyone): 6:22 PM: That would help you determine PSADT
Ben Nathanson (to Everyone): 6:23 PM: @Michael Chandler –‘chemical recurrence’ or ‘biochemical recurrence’ just means that your PSA, after having gone low, has risen again past a specified level
Len Sierra (to Everyone): 6:26 PM: Biochemical recurrence is defined as a rise in PSA to 0.2 ng/mL and a confirmatory value of 0.2 ng/mL or greater following radical prostatectomy
Stephen Saft (to Everyone): 6:36 PM: I am going to say good night. My son is staying at my house tonight and I am going to hang out with him for a bit. Thanks
Jake Hannam (to Organizer(s) Only): 6:37 PM: anomaly? get rechecked
Peter Kafka (to Everyone): 6:38 PM: He should see a Med Onc right away, perhaps at MSKCC. My 2 cents.
Bill Franklin (to Organizer(s) Only): 6:39 PM: I agree, in my opinion his doctor should order a recheck anyway. I know I would ask for one.
Joe Gallo (to Organizer(s) Only): 6:39 PM: NJU is primarily a radiation facility
Bill Franklin (to Everyone): 6:41 PM: If he got rechecked and the PSA went down again on treatment then maybe a scan is in order.
Stan Friedman (to Everyone): 6:42 PM: where in New Jersey does he live?
Rick Davis (to Everyone): 6:46 PM: joeg@ancan.org
Peter Kafka (to Everyone): 6:50 PM: If he complains of arthritis and back pain, all the more important to get a psma scan. Just in case….
John Antonucci (to Everyone): 6:51 PM: good point Peter
Peter Kafka (to Everyone): 6:58 PM: Is HIFU covered by Canadian Medicine? Is it considered Standard of care in Canada? I have been anemic due to ADT for 8 years. My Hemoglobin is in the low 9’s. Eleven is pretty good . I have not been on Lupron for 5 months now. So I think Nubeqa causes it.
Stan Friedman (to Everyone): 7:29 PM: can’t he do a televisit?
Julian Morales-Houston (to Everyone): 7:29 PM: Dr E is a fantastic Medical Oncologist and works with me to guide me thru this PCa.
John Ivory (to Everyone): 7:30 PM: I agree–try to meet Dr. E by Zoom first if you can’t afford to travel
Julian Morales-Houston (to Everyone): 7:31 PM: Dr E does televisit and in this current pandemic increase – It is preferred!
Jerry Pelfrey – Mexico (to Everyone): 7:33 PM: Gentlemen, unfortunately I must leave now.
Julian Morales-Houston (to Everyone): 7:37 PM: Eleni Efstathiou, MD is at Houston Methodist Oncology Partners 713-441-9948. You can mention my name!
Bill Franklin (to Everyone): 7:38 PM:. Good night and Happy New Year to all!
Fred Stires (to Everyone): 7:39 PM: Any recommendations for a good medical oncologist in North New Jersey
Ken (to Everyone): 7:40 PM: Signed up for 12 more chemo cycles so it would take me to 43…. its possible!
John Ivory (to Everyone): 7:41 PM: Ken–you’re like the Superman of chemo–Chemoman!
Jake Hannam (to Everyone): 7:41 PM: You are my hero, Ken. Keep it up!
Len Sierra (to Everyone): 7:44 PM: Ken, time to apply to the Guinness Book of World Records — freakin’ amazing!
Jake Hannam (to Everyone): 7:47 PM: yes, great job Herb!
Len Sierra (to Everyone): 7:50 PM: Alk Phos reference range: The normal range is 44 to 147 international units per liter (IU/L) or 0.73 to 2.45 microkatal per liter (µkat/L). Normal values may vary slightly from laboratory to laboratory.
Jake Hannam (to Everyone): 7:50 PM: ALP results are reported in units per liter (U/L). For men and women older than age 18, an ALP level between 44 and 147 U/L is considered normal. The normal range for children is higher than that for adults, especially for infants and teens because their bones are growing rapidly.
Frank Fabish (to Everyone): 7:53 PM: got to go guys
Peter Monaco (Private): 7:54 PM: 5 weeks since my hip replacement surgery. Anterior method is awesome. Recovery has been a breeze!
Rick Davis (to Peter Monaco): 7:54 PM: Told ya …. ;<)))))
George Rovder, Arlington VA (to Everyone): 7:55 PM: Thank you all. George
Peter Monaco (Private): 7:55 PM: Indeed you did! Glad you were right!
don kramer (to Everyone): 7:56 PM: Thank you, Rick and Joe and all. always beneficial to get the help along this path of barbed wire and broken glass
don kramer (to Everyone): 7:56 PM: Be Well , ALL.
Pat Martin (to Everyone): 7:57 PM: See ya all next Tuesday.
Julian Morales-Houston (to Everyone): 7:59 PM: Happy New Year to all!!
Michael Chandler (to Everyone): 8:00 PM: Thank you Rick and all. Happy New Year and see you next week
Martin Wice (to Everyone): 8:01 PM: Thank you. Happy new year.
