Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 15, 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: This week some guys have multiple GU med oncs, others have none, and some question theirs. Be sure you have at least ONE GOOD ONE!! (rd)
Topics Discussed
Metastatic disease stabilizes for 4 years; disease progresses for young man not treated that aggresively early; abi vs enz; starting darolutamide; moving to a GU med onc; confusion reading Pylarify; recurrence ‘AGAIN’; trust your good GU med onc
Peter Kafka (to Organizer(s) Only): 6:30 PM: Jonathan Starr has been a very active advocate and regular with the Advanced support group in Palo Alto. Very knowledgable and helpful to many others. I have met Jonathan several times over the years, in person and online
Jake (to Organizer(s) Only): 6:35 PM: Great turnout tonight! 46
AnCan – rick (to Jonathan Starr): 6:48 PM: Jonathan – please give Terry my best next time you see him. And big WELCOME
eric (to Everyone): 6:49 PM: Hey I’m from Rochester, NY. Welcome
AnCan – rick (to Jonathan Starr): 7:12 PM: Ever heard of 10x docetaxel off the bat
Jonathan Starr (Private): 7:13 PM: No, I have never heard of more than 6 sessions, unless it is at a reduced dosage and higher frequency.
Jake (to Organizer(s) Only): 7:25 PM: abi after enz or vice versa?
Len Sierra (to Everyone): 7:38 PM: Alan, this article discusses the comparison of enzalutamide, apalutamide and darolutamide. It’s for nmCRPC, but it would apply to mCRPC also. https://pubmed.ncbi.nlm.nih.gov/34054…
Rich Jackson (to Everyone): 7:44 PM: Was just looking at two insurance plans and none of the ..lutamide’s above were listed. Wondering about pricing? Peter Kafka (to Everyone): 7:47 PM: It is my understanding that an MRI can’t determine if a tumor is prostate cancer or something else. It can show that something is present but not diagnose what the pathology is
Peter Monaco (to Organizer(s) Only): 7:48 PM: Rich – I checked enzi and abi in June – both cost about $2000 per month through my plan with WellCare/CVS. I eventually was able to get abby through Mt. Sinai’s specialty pharmacy for $55 per month.
AnCan – rick (to Everyone): 7:48 PM: Correct Peter – i would agree
Alan Moskowitz (to Everyone): 7:49 PM: Len, Thanks for the article.
Rich Jackson (to Organizer(s) Only): 7:49 PM: Don’t have a need for them, yet. But was looking to see what the future may hold. Thank you Peter.
Alan Moskowitz (to Everyone): 7:49 PM: Rich Jackson- sometimes those drugs are listed under brand names rather than the generic names.
AnCan – rick (to Everyone): 7:50 PM: All the 2nd line AA’s can be found with subsidies from many different places
Rich Jackson (to Everyone): 7:50 PM: Didn’t look for brand names. Will try those. Thank you.
David Muslin (Private): 7:56 PM: Current treatment:10.17.20 Abiraterone + Pred on hold since 7/15/2021
Edward Clautice (to Everyone): 7:57 PM: Even on 40. skip right thruogh Amarillo – it smells really bad
Mark Perloe, MD Atlanta (to Everyone): 7:58 PM: Darn, we plan Little Rock the first day. Then Amarillo, then Flagstaff. I hope our dog coooperates.
Alan Moskowitz (to Everyone): 8:05 PM: Need to leave, thanks again for the guidance.
Len Sierra (to Organizer(s) Only): 8:12 PM: I’ve got to drop off, guys. Great job, Herb. See you next week!
Edward Clautice (to Everyone): 8:15 PM: thanks – gotta go
Joe Gallo (to Organizer(s) Only): 8:17 PM: She should watch Epstein video on our site
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 9, 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: The importance of having a GU Med Onc (genitourinary medical oncologist) comes up more than once. And keep good records!(rd)
Topics Discussed
If chemo didn’t do the trick….; uncertain if trial is effective; draft a GU med onc – quickly!; 3 yrs off HT and treatment holding; in the midst of Provenge; the importance of good record keeping; PSAMA baseline scan; the PROMISE germline trial
Chat Log
Edward Clautice (to Everyone): 4:15 PM: 3/29/201 PSA 8.9 5/6/201 Biopsy 8 cores Gleasons range from 3+3 to 4+5. Average Gleason 7.5. Also has perineural invasion
6/29/2015 Urologist removers prostate and some associated nerve (the one which controls erections) are removed at surgery; Inova Hospital Fairfax VA Lymph nodes biopsied. 0/3 with cancer Seminal vesicles are involved Prostate. Gleason 4+5 Positive margins seen. Tumor volume 70%
7/30/2015 – 10/?/2015
Begin radiation treatments of the prostate bed Receive a whole bunch of radiation. Doc says, never again get radiation there.
10/16/2015 PSA 0.4
1/28/16 Switched to Dr J Aragon-Ching, Oncologist PSA – <0.1 Also receive Lupron Testosterone 6 ng/L
5/15/2018 Continue with DR Aragon-Ching getting Lupron and generally getting <0.1 on PSA
5/15/2018
Move from Fairfax to central Kentucky Sign up with Dr. Monte Metcalf. Regular oncologisy at regular hospital
8/?/2018 PSA begins to rise. Not sure how high. Begin Casodex. PSA drops
12/?/2019 PSA now rising again Switched over to Abiraterone. Dr Metcalfe seems not as concerned as I am . Abiraterone works for maybe 6 months
6/?/2020 PSA begins to rise again I decide to switch over to that giant teaching hospital (U of Kentucky) I keep driving past. Also I now have much better medical insurance so I actually can switch over.
11/2/2020 PET scans, CT scans, every other kind of scan Lots of bone tumors, not a lot of soft tissue tumors (there were some reasons for this next delay, and honestly I forget exactly what they were) A couple times Dr PW takes my scans to the weekly med school oncology faculty meeting. “Tumor of the week club.”
2/?/2021 Bone biopsy. Shows tumors to be metastatic. PSA running about 7; which Dr PW says is really low compared to the tumor mass I have. Dr PW has senior UK pathologist personally check biopsies to make sure it is prostate cancer and not “small cell.” Senior pathologist confirms this is true.
4/15/2021 +/- Stop abiraterone Begin Docetaxel every 3 weeks, for 10 treatments Zoledonic acid (?for bones) every 6 weeks and keep getting anti-hormone shot, elegard , every 12 weeks Also prednisone PSA 7.11 I am allergic to docetaxel and it tries to stop me from breathing. Docs give me stuff so this does not happen any more. Minimal side effects that stop me from wanting to get more treatments of docetaxel
8/12/21 PSA 4.88
11/3/2021 Docs just posted results of yesterday’s CT scans and nuclear medicine scans PSA 3.7 Scans show no soft tissue tumors Scans show lots of widespread bone tumors. “Impression: Widespread bone metastases.” “New subtle foci of….” 4 or 5 places “Bones/joints: Focal mildly intense increased uptake involving……” a four line list of different bones. “Compared to previous: Progressive bone metastases.
11/4/2021 Get last docetaxel Talk with Dr PW about what comes next
Note: Up to this time I have zero symptoms of pain from tumors or anything else in my bones. I exercise and lift weights regularly.
Vic (to Organizer(s) Only): 4:32 PM: Is sequencing of tumor the way to determine if the cancer as advanced from MSPC to MRPC?
Vic (to Organizer(s) Only): 4:34 PM: Are any LU-177 trails open to MSPC?
Len Sierra (to Everyone): 4:42 PM: Vic, no, sequencing is done to see if there are mutations for which there are therapies that target that mutation.
AnCan – rick (to Vic): 4:44 PM: Vic ….. PSA rising is the sign of hormone resistance. The only trial available to HSPC requires no prior hormone therapy
Jake (to Organizer(s) Only): 5:07 PM: No, I checked. It actually recorded 49 seconds including my apologies and the discussion about logging off and back on. Weird! You made the right decision since it is too undependable …
Vic (to Organizer(s) Only): 5:14 PM: what is bi-polar androgen therapy? Eligard plus Abiraterone?
Joe (to Everyone): 5:18 PM: gotta run gents, great to see y’all again
Rusty (Private): 5:23 PM: BBL have another meeting going on.
Len Sierra (to Everyone): 5:23 PM: Carlos, this comes from the Provenge Treatment Guide: How to Prepare:
Stay hydrated by drinking more water in the days leading up to your
appointment
Avoid caffeinated beverages on the day of your appointment
Eat calcium-rich foods such as dairy products, dark leafy greens, or
supplements
Eat a hearty meal within four hours of your appointment
Wear loose-fitting clothes, with sleeves that can be raised above the elbow
Bring a current photo ID
Consider arranging transportation to and from the procedure
eric (to Everyone): 5:24 PM: ok thanks you.
eric (to Everyone): 5:27 PM: hey rick in order to particoate in the trail you sent me. Are you saying if I was still on the Orgovyx. I would be eligible for the Netashim trial?
AnCan – rick (to eric ): 5:27 PM: If me I would consider getting back on an LHRH drug like orgovyx ASAP. If not orgovyx or firmnagon, then be sure they give you at least 15 days of bicalutamide first. Some docs forget! you don’t nbeed with Orgo or Firma. Put pressure on them to give youa quick appt. You don’t need Song now you need a GU (genitourinary) medical oncologist
Herb Geller (to Everyone): 5:29 PM: Actually, one other person at Hopkins is Catherine Handy Marshall. She is an Antanorakis understudy and I think Carl saw her.
AnCan – rick (to eric ): 5:29 PM: Eric – if you were still on Orgovyx AND your PSA was rising you would be eligible.
Carl Forman (to Everyone): 5:29 PM: Yes I did see her; impressive.
AnCan – rick (to eric ): 5:31 PM: So here’s another name above. Catherine Handy Marshall
Pat Martin (to Everyone): 5:33 PM: See ya all next Monday.
On November 3rd, we had Dr. Andrew Matthew (Senior Psychologist, Co-Lead, GU Survivorship Program Princess Margaret Cancer Centre) give a talk to our AS group titled “Walking Around With Cancer: The Psychological Burden of Active Surveillance”
For over 20 years at Princess Margaret, Dr. Matthew’s clinical care and research has focused on urologic cancers, including prevention, treatment decision-making, sexual rehabilitation, survivorship, and patient quality of life.
Watch here:
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 Video Chat, Nov 1, 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: Can you reallly avoid significant side effects when PCa recurs – right now AnCan thinks not BUT we hope Lu177 PSMA proves us wrong! We hear from two men who hope so. (rd)
Topics Discussed
Under 60 man faces Gleason 9 recurrence; recently Dx de novo Mx with G10; recurrent man seeks alternative to systemic Tx; side effects due to enz?; mobility trial at OHSU; pre-Mx abiraterone; more than nutritional option required; EMBR Wave still seeks trial particpants; GERD/acid reflux; super broccoli and power nutrients
Chat Log
Rich Jackson (to Everyone): 5:23 PM: Next gathering is Tuesday, Nov 9 at 6pm EST
Len Sierra (to Organizer(s) Only): 5:28 PM: What was Henry’s PSA and Gleason before surgery?
Len Sierra (to Organizer(s) Only): 5:30 PM: Thanks,
Jake. He never should’ve had surgery. That’s a shame.
Herb Geller (to Organizer(s) Only): 5:31 PM: I agree. I have no clue why he got surgery with Gleason 9 and positive nodes.
Herb Geller (to Organizer(s) Only): 5:31 PM: What is his current PSA?
Len Sierra (to Organizer(s) Only): 5:31 PM: I think he said 4.8 post surgery.
Herb Geller (to Organizer(s) Only): 5:32 PM: Mark Pomerantz is publishing with Eli. But surgery was in August, right?
Peter Monaco (to Everyone): 5:35 PM: September
Jake (to Organizer(s) Only): 5:35 PM: diagnosed in august
Pat Martin (to Everyone): 5:38 PM: Hutchinson is great, in my opinion. Been with them for 7 years. I have not found any “klinkers” in the whole staff. i was Gl 9(5+4)
Herb Geller (to Everyone): 5:55 PM: It is a scan that will identify areas of high PSMA levels in your body.
Stephen Saft (to Everyone): 5:59 PM: I am on the elliptical now
Edward Clautice (to Everyone): 6:00 PM: my exercise experience is similar to jimmy greenfield. round 10 of docetaxel, run, lift weights. minimal side effects felt
Joe Gallo (to Everyone): 6:05 PM: Germline genetic test looks at inherited dna variants Sonomic genomic test look at the actual tissue sample.
Ted Healy- Portland, OR. (to Everyone): 6:08 PM: I had a genetic test due to my family history and stage of my cancer. turns out i carry the HOXB13 variant which predisposes all of my offspring, brother and sisters offspring to early prostate cancer. At least i can give them a heads up.
Henry (and Staci) Cornelius (to Everyone): 6:10 PM: Can genetic testing be done on tissue taken during my surgery on Sept. 21? It seems too late for that, right?
Stephen Saft (to Everyone): 6:10 PM: no oos that tisse is available for long time not too late.
Henry (and Staci) Cornelius (to Everyone): 6:11 PM: Copy that. Thanks.
Stephen Saft (to Everyone): 6:13 PM: my prostectomy tisse from 2017 has been many places
AnCan – rick (to Everyone): 6:46 PM: joeg@ancan.org
larry meddles (to Everyone): 6:58 PM: Gotta go, have another meeting in 2 minutes. Thanks.
AnCan – rick (to Everyone): 7:01 PM: EMBR Wave trial
Ted Healy- Portland, OR. (to Everyone): 7:02 PM: Gotta go as well. Thank you all for being here and special thanks to all that make this meeting possible!
Henry (and Staci) Cornelius (to Everyone): 7:02 PM: I’m going to say goodnight to my 11 year old daughter. Be back in a bit.
Edward Clautice (to Everyone): 7:06 PM: gotta go, thanks to all
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 26, 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/.
To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/.
Editor’s Pick:This week’s repeating theme seems to be the need to switch your QB to a GU medical oncolcogist as your disease progresses. And great discussion about monotherapy 2nd line anti-androgens. (rd)
Topics Discussed
DenovaMx man treated by urologist; interviewing for a new QB doc; the role of palliative care; Bruce’s Breakfast Club!; recurrent PCa requires adding GU med onc; considering 2nd Lu177 trial; appoint with Dr. Beltran coming up; reading PSMA scan – who to beleive?; monotherapy darolutamide works; LHRH role in presence of 2nd line Anti-Androgen – QoL considerations; Lymph and Lung Mx; Fly fishing!
Chat Log
Bruce Bocian (to Everyone): 3:10 PM: It was excellent!
Mark Perloe, MD Atlanta (to Everyone): 3:12 PM: Having fun post prostate. First parathyroid surgery, now planning a pancreas biopsy early November. After prostate, parathyroid and pancreas, I’m running out of organs starting with “p”.
Bill Bradford (to Everyone): 3:18 PM: Has anyone had any experience with Dr. Eugene Kwon with Mayo Clinic in Rochester? Someone recommended him for a 2nd opinion consultation for treatments. If so, I can reach out off line later in the week if that is ok
Peter Monaco (to Everyone): 3:18 PM: Good luck Mark!
AnCan – rick (to Mark Perloe, MD Atlanta): 3:19 PM: Heh Doc ….. did they find all the parathyroids??
Mark Perloe, MD Atlanta (Private): 3:23 PM: yes. introspection sestimibi. only one gland +
Julian Morales (to Everyone): 3:25 PM: NCCN – National Comprehensive Cancer Network
AnCan – rick (to Bill Bradford): 3:28 PM: genitourinary GU
George (to Everyone): 3:28 PM: Genito Urinary Oncologist
Bill Bradford (Private): 3:31 PM: Thanks Rick – very helpful. I am seeing a GU medical oncologist at MD Anderson (Omar Alhalabi) for the last month. I am new to the disease and the treatments available so wasn’t sure if I should get a 2nd opinion at this early point in my battle
AnCan – rick (to Everyone): 3:36 PM: Jacqueline Vuky, Julie Graff, Tom Baer all at OHSU. All genitourinary medcial oncologists
Len Sierra (to Organizer(s) Only): 3:43 PM: Guys, the fact that Tom has bone pain with a PSA less than 0.1 makes me wonder if he has PCa cells that are not producing PSA and that I might want to see him get another scan like an FDG-PET.
Julian Morales (to Everyone): 3:44 PM: • United States +1 (646) 749-3129 – LogMeIn/GtM
Joe Gallo (to Organizer(s) Only): 3:44 PM: I have a 50Vets call in 15min so I will leave quietly
AnCan – rick (to Everyone): 3:49 PM: To dial in: +1 (646) 749-3129 #222 583 973
Mark Perloe, MD Atlanta (to Everyone): 4:00 PM: Chol11 should be retired and I think a PYL PET is indicated.
John Antonucci (to Everyone): 4:20 PM: I imagine for any lutetium trial a subject has to have a certain minimum psa?
AnCan – rick (to Everyone): 4:23 PM: rarely is there a PSA eligibility criteria, Dr. John
John Antonucci (to Everyone): 4:23 PM: then what is the outcome measure, Rick?
AnCan – rick (to Everyone): 4:24 PM: usually rPFS
John Antonucci (to Everyone): 4:24 PM: You mentioned a study for guys like me, hormone sensitive and de novo metastatic. but my psa is to low to measure outcome
John Antonucci (to Everyone): 4:27 PM: oh, right. thanks
Gary Peters (to Everyone): 4:27 PM: What is the meaning of “de novo metastatic”? What about “rPFS”?
Len Sierra (to Everyone): 4:28 PM: de novo metastatic means metastatic on diagnosis. first diagnosis, prior to any treatment.
John Antonucci (to Everyone): 4:29 PM: radiographic progression free survival
Gary Peters (to Everyone): 4:31 PM: Thank you Len, thank you John
Bruce Bocian (to Everyone): 4:39 PM: https://radonc.uchicago.edu/faculty/stanley-liauw-md If your in the Chicago area this guy is awesome!
Paul Freda (to Everyone): 4:43 PM: What is rPFS ??
Len Sierra (to Everyone): 4:45 PM: radiographic progression free survival
Bruce Bocian (to Everyone): 4:57 PM: Excellent call tonight! Len, the article is awesome. Rick, great job as always! Herb,”Give a man a fish, and you fed him for a day. Teach a man to fish and you feed him for a lifetime.
