Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 9, 2021
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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.
Herb Geller (to Everyone): 5:37 PM: https://www.hopkinsmedicine.org/profiles/details/catherine-handy
Frank Fabish (to Everyone): 5:39 PM: Got to go guys. Thanks
AnCan – rick (to Everyone): 5:47 PM: https://www.fiercehealthcare.com/tech/invitae-scoops-up-consumer-health-tech-firm-ciitizen-for-325m Bought by Invitae
AnCan – rick (to Vic): 5:50 PM: Vic …. are you any realtion to Lauren Paglisotti? We spoke to her at Michael J Fox
Len Sierra (to Everyone): 5:52 PM: That’s the goal of most startups — get bought out by a larger compary and cash in!
Vic (to Everyone): 5:57 PM: Thanks all!
Carlos Huerta (to Everyone): 6:00 PM: Good night all
AnCan – rick (to Everyone): 6:08 PM: Gotta run over to te RMCmeeting.G’night Gents