Editor’s Pick: Even amongst the best GU med oncs, some work with you and some do not. Hear how one makes it tough to access darolutamide (Nubeqa) while another does not.
Topic Discussed
Handling transition after intial treatment on RT + ADT; recurrence after RP 7 yrs ago; locating a PSMA scan; partial ADT holiday; using lighter exercise to fight fatigue; enzalutamide crippling – access darolutamide; staus of NHI PSMA trial; don’t fall for questionable trials; what next after PARP?; incontinence no more; SBRT salvage radiation; hernia experiences
Chat Log
Ron Bucher (to Everyone): 5:18 PM: I attended advanced groups before I became an advanced patient, and I’m glad I did.
Herbert Geller (to Everyone): 5:56 PM: https://www.uclahealth.org/urology/iuo/an-experimental-imaging-scan
Herbert Geller (to Everyone): 5:59 PM: Nat Rev Urol . 2016 Apr;13(4):226-35. doi: 10.1038/nrurol.2016.26. Epub 2016 Feb 23. Current use of PSMA-PET in prostate cancer management Tobias Maurer 1, Matthias Eiber 2, Markus Schwaiger 2, Jürgen E Gschwend 1 Affiliations expand PMID: 26902337 DOI: 10.1038/nrurol.2016.26
Len Sierra (to Everyone): 6:00 PM: PSMA as therapy: https://www.prostatecancer.news/
Jeremy (to Everyone): 6:16 PM: Master Ming Tong Gu https://www.youtube.com/watch?v=Oj0ewBvr6zM&list=PLnQPg9ef3v52NHuQ1WIO8yjN-2yqpqIcs&index=13&t=4s
Len Sierra (to Everyone): 6:18 PM: You have to go to: smile.amazon.com
Russell Smith (to Everyone): 6:24 PM: Just signed up on Smile.amazon.com
Editor’s Choice: So much tonight inc 30 gents!!! My choice – maybe the new Dx G4+5 with a suspicious image on L5; or, ECE with just 5mm of G3+4??? (rd)
Topics discussed
New Dx G4+5 with a suspicious mass; MRI shows ECE with tiny amount of G3+4; treating oligoMX the Kwon way; incontinence – do your Kegels!!; Procrit may finally help low blood counts; do stains mask your PSA?; addressing hot flashes; continued success on abi; penile Mx still a puzzle
Chat Log
John Ivory (to Everyone): 3:24 PM: Jim, I found this 5 min. video by the head of the Prostate Cancer Research Inst. (PCRI) in thinking about surgery vs. radiation https://bit.ly/3fSQQ37
Carl Forman (Private): 3:26 PM: just to let Jim know about the patient guide from PCF.org
Jeremy (Organizers): 3:47 PM: Rick, just got back from my second opinion at UCI w Dr. Edward Uchio. They agree that the MRI report is not consistent with the biopsy findings. My UA showed I have a bladder infection. So I’m holding off on surgery and going to undergoe genomic testing and antoehr MRI. Thank god I found you guys.
Herbert Geller (to Everyone): 3:58 PM: There is no PSMA PET in Pitt. But there is an ongoing trial at CWRUhttps://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2018-00468&r=1
AnCan – Rick (to Everyone): 4:34 PM: https://www.urotoday.com/video-lectures/prostate-cancer-foundation-2019/video/1593-the-impact-of-vitamin-d-and-statins-on-prostate-cancer-outcomes-lorelei-mucci-and-elizabethplatz.html
I want to bring your attention to a new post by AnCan’s Advisory Board Member, Allen Edel, who has his own prostate cancer blog. He recently posted a table containing a list of PSMA-targeted radiopharmaceutical clinical trials that are active, still open to recruitment, or will soon be recruiting. Please be aware, these are NOT diagnostic trials, but clinical therapy trials for men with mCRPC, metastatic castrate resistant prostate cancer. Allen included links for contact information for each trial. Thank you, Allen!
Editor’s Pick – Low PSA with high volume metastasis (rd) + successful treatment for ‘young’ man with de novo metastatic disease
Topics Discussed
de novo Mx with low PSA; clinical trial conflicts; biopsy sample from primary vs. Mx tumor; relevance of bone density tests; young de novo Mx man finds successful treatment; debulking the primary; when the end may not be the end!; bone biopsies; testing for PSMA avidity; PSMA scan availability in Covid times; testosterone swings; shipping delays for abiraterone; specialty pharmacies; what is the ‘doughnut’ hole?; abscopal/immuno effect from RT
Chat Log
scott (to Everyone): 5:05 PM: is this link the same link for all meetings?
Ken Anderson (to Everyone): 5:06 PM: scott yes this is the same meeting room
scott (to Everyone): 5:07 PM: 100 degrees isn’t fun…
Dell Jensen (to Everyone): 5:38 PM: Both Lupron and Docataxel
Dell Jensen (to Everyone): 5:43 PM: Rick is correct, treating the primary is critical
scott (to Everyone): 5:48 PM: is docetaxyl an infusion or a pill?
Dell Jensen (to Everyone): 5:48 PM: infusion
Ken Anderson (to Everyone): 5:49 PM: infusion once every three weeks
scott (to Everyone): 5:49 PM: do you do docetaxyl if the Zytiga I am on isn’t working?”
Ken Anderson (to Everyone): 5:49 PM: you can for sure do both at the same time…
scott (to Everyone): 5:51 PM: does the docetaxil have hard side effects?
Dell Jensen (to Everyone): 5:51 PM: osteoporosis is a result of ADT treatment
Dell Jensen (to Everyone): 5:51 PM: I definitely concur
Dell Jensen (to Everyone): 5:52 PM: my side effects were minimal, infections were my problems.
Ken Anderson (to Everyone): 5:52 PM: all chemo has side effects.. doce has some for sure and all are post on the web.
scott (to Everyone): 5:53 PM: thanks ken
Peter Kafka (to Everyone): 5:54 PM: I had a specialized genetic test from MIRA labs that gave me a risk assessment for developing a grade 2 or greater adverse reaction to PD1/PDL1 agent therapy.
Russ Smith (to Everyone): 6:28 PM: Good night all. It’s been a long day.
scott (to Everyone): 6:31 PM: is david muslin head of answer cancer foundation?
Len (to Everyone): 6:35 PM: No, Rick is head of AnCan
scott (to Everyone): 6:36 PM: I sent a donation to ancan fdn in honor of rick and have heard nothing
Len (to Everyone): 6:36 PM: It will be acknowledged soon, if in fact they received it properly.
scott (to Everyone): 6:37 PM: thanks…just want to make sure rick is honored by donation
scott (to Everyone): 6:39 PM: is speaking freely 8 pm az time?
Rich Jackson (to Everyone): 6:43 PM: Speaking Freely starts at 8pm EST.
scott (to Everyone): 6:43 PM: thanks
Rich Jackson (to Everyone): 6:43 PM: Same connection as this call.
scott (to Everyone): 6:53 PM: who is the gentleman now speaking?
Dell Jensen (to Everyone): 6:53 PM: Correia
Dell Jensen (to Everyone): 6:55 PM: Are there other compounding pharmacy?
Dell Jensen (to Everyone): 6:57 PM: I have local one that is in Rock Island, IL
Radionuclide technology to manage rather than screen advanced prostate cancer is an intriguing treatment alternative that has not yet been FDA approved in the US, although we are hopeful it will happen in 2020. There are privately paid as well as trial opportunities overseas, mainly in Germany and Australia but also in S. Africa. The guiding agent is attracted to PSMA, a protein often but not always expressed by prostate cells; the radionuclide is most often lutetium (Lu177) or actinium (Ac225) and sometimes a combination of both.
AnCan has supported several men who underwent this treatment, both in in trials in the US as well as in Oz and Germany. Most recently a long time particpant, whose PSA was increasing after several treatment modes including Xtandi and docetaxel + carboplatin, made the decision to enter Lu177 PSMA treatment in Germany. Here is his report after the first session in Heidelberg; he is now back stateside. This report also appeared on Health Unlocked. (rd)
I am sitting in my hospital room in Heidelberg hospital and thought I would send this update.
To get an appointment at Heidelberg, one needs to go to www. Ukhd.org and fill out the online application. You will need to scan many of your records into your computer and then upload them on the application. It is also very important to upload all the images from your Psma scan, otherwise you will only receive the Vision trial dose of Lu177. They will not be able to dose adjust based on your scan, and you will probably not receive Ac225.
Within 24 hours of sending my application, I received an email that said I had been accepted for treatment with an appointment date in 2 weeks. I was given an IO number to be used for correspondence and questions (international office).
I booked airfare from JFK to Frankfurt. Only $650 round trip. (Round trip from Norfolk was twice that amount) so I had my appointment with Dr Drake on Tuesday, and flew out that afternoon. Flight was 7 hours. Arrived Frankfurt at 5 am. There is a train station at the airport where you can buy tickets to Heidelberg with a transfer in Mannheim. Train ride was 1 hour. Took a cab to the hotel. It could not have been easier.
We are staying at a cute, clean, well appointed boutique hotel called Rafaela, run by a very nice woman named Maria. Only $100 per night. Walking distance to old town. And Heidelberg is a beautiful charming city on a river with a castle. Wonderful restaurants. Lots to see and do. There is a bus stop 1 block from the hotel that takes 5 minutes and drops you right outside the Kopfklinik. Alternatively you can walk the 20-30 minutes.
Today I arrived at the clinic at 8:15 for inpatient registration. It was a breeze despite a slight language barrier. Then up to nuclear medicine on the 4th floor. There nurse Tomas told us the rules regarding radiation safety. Visitors are limited and must remain behind a 4 foot protective wall. My clothes upon discharge must be placed in a protective bag until washed at home.
The doctor starts your IV and draws your blood. (BTW, you do not see Dr Haberkorn.) He answers your questions and you sign the consent. At 12:30 he injected a combination of Lu/Ac at a dose of 7.4 and 2.0 Mbq. Direct push, no discomfort. Three hours later you go for a scan to determine the radioligand uptake by the tumor. My tumors were intensely PSMA avid, and fortunately because of this I had a great uptake of radiation by the tumors. I’m highly radioactive, and the doctor said this was a very good sign, and bodes well for a successful treatment. I will remain in the hospital for 2 days
Follow up will consist of a PSA every 3 weeks. He warned my PSA may rise due to tumor kill. Also routine bloods every 2 weeks. My next appointment is in approximately 7 weeks on March 17. Doctor said I would most likely get 3-4 treatments. Cost of first treatment is 9800 euros.
I am pleased with my choice so far. Heidelberg oozes positive energy. The hospital seems to be very organized, efficient, and the staff are friendly, well trained, and speak English.