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.
A few very important words from one of senior moderators, Peter Kafka! (rd)
We often stress the importance of “being one’s own best advocate” at our online AnCan support gatherings. After several recent personal experiences and hearing about others I thought it might be appropriate to add another word to this maxim, and that would be “vigilant”.
All too often I have noticed that I can get complacent when dealing with routine medical appointments and assume that the professionals I am working with are focused and have my best interests front and center. But like me, my medical team are human and can make mistakes and assumptions that are wrong.
Earlier this week I was at a lab I had been to many times before to get my monthly blood tests. The tech was new, but I had filled out the orders online when making my appointment and had my doctor’s standing order with me. I had my sleeve rolled up and the tech was getting ready to unwrap the needle to jab me when I noticed that she only had one test tube out for sampling. I questioned this because I usually fill three or four. She said; “We’re just doing hemoglobin, right?” “No!” I replied, pulling out my previous month’s results from the notebook on my lap. “We’re doing CBC’s, Hepatic, PSA, Testosterone and more.” She retreated into the back room to consult with her supervisor and both reappeared with an apology and proceeded with the whole enchilada.
I was reminded of another occasion when I was in the hospital for a day or two after surgery from a broken femur. Looking up from my hospital bed I saw the notation on the white board that I was listed as a diabetic. No wonder my meal was so bland. Turned out that just because I was taking Metformin as a pharmaceutical for my prostate cancer their assumption was that I was diabetic. I had to straighten out their confusion.
Over the years I have learned that I need to be on “high alert” when undergoing any medical procedure, routine or otherwise. Mistakes are all too easy to make. Some might be inconsequential, but others can have serious implications. In this time when getting inoculations for covid-19, seasonal flu, shingles or other shots down the street at the local pharmacy it is doubly important to stay vigilant. Yes, these professionals are all too careful to make sure that our names and date of birth are correct on the orders and labels, but what about the injected drug or prescription? I bet that many of us have stories to tell.
So, keep your eyes open, stay vigilant, and ask questions. “Being one’s own best advocate” requires us to step up and get involved so that we understand and know the twists and curves of our medical journey even if it seems to be uncharted territory. It is our journey after all.
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:A tough choice between Herb goes fishin’ and reading PSMA scans …. very tricky still (rd)
Topics Discussed
VERU-111 trial – oral chemo; recurrent diesease at age 56; RNA sequencing but maybe not quite ready for prime time; what next after cyclophosphamide; is CHEK2 significant; Provenge discussion; Lu177 trials; brain met slows progression to trial; dubious CBCs; reading PSMA scans … x 2!; when to start chemo; SBRT dosage; CT vs PSMA SCANS; how long to remain on ADT; Herb goes fishing!
Chat Log
Jake Hannam (to Everyone): 5:22 PM: GU (genito-urinary) medical oncologist
rick stanton (to Everyone): 5:29 PM: might consider immunotherapy – might consider sequencing and considering appropriate targeted therapy (or both)
Pat Martin (to Everyone): 5:34 PM: A good rule of thumb I stay close to: Pain is NOT therapeutic
Jefff Preston (to Everyone): 5:37 PM: Wouldn’t Mr. Ernst’s father have taken some much more challenging chemo… different than the meds now.
Rick Ernst (to Everyone): 5:49 PM: Thanks for listening to my story. I need to leave the meeting.
rick stanton (Private): 5:54 PM: I could weigh in on targeted and immunotherapy if you wish
Joe Gallo (to Everyone): 5:59 PM: germline/iinherited. somatic.
rick stanton (to Everyone): 5:59 PM: I recommend whole exome RNASeq as well
rick stanton (to Everyone): 6:00 PM: Tempus XT will run that test in addition to ~648 “hot spot” genes. This can provide your med oncologist insights into immunotherapy options
Jake Hannam (to Everyone): 6:02 PM: You can buy it but ask about the trial (free)
Rick Davis (to Len Sierra): 6:08 PM: Will RNA Seq show anything that is currently available???
Len Sierra (Private): 6:10 PM: My guess is no.
Carl Forman (to Everyone): 6:11 PM: Interesting 30 min. video with Dr Aparicio at MD Anderson – PC & Immunotherapy, Changing the outlook for metastatic PC https://summit.cancerresearch.org/event/prostate-cancer-and-immunotherapy/
Rick Davis (to Everyone): 6:14 PM: Most interesting point made by Aparicio – that bone Mx is more resistant to immunotherapy!
Joe Gallo (to Everyone): 6:22 PM: Most common somatic are Oncotype Dx, Prolaris, Decipher.’
Rick Davis (to Everyone): 6:26 PM: Joe – those are not really suitable for advanced PCa
rick stanton (to Everyone): 6:30 PM: gotta help my wife – so I need to hop off – THANK YOU all!! Look forward to next time
Rusty (to Everyone): 6:31 PM: Have a great week everyone! I will not be on next week due to my shoulder replacement next Monday.
Jake Hannam (to Organizer(s) Only): 6:31 PM: good luck rusty!
Rick Davis (to Everyone): 6:33 PM: Wish you the very best with your shoulder, Rusty! Watch the recording to find out how Herb did at Reel Recovery
Jake Hannam (to Organizer(s) Only): 6:40 PM: Hi Herb!
Len Sierra (to Organizer(s) Only): 6:41 PM: What happened Herb? Did you get a fish hook through your finger??
Herb Geller (to Organizer(s) Only): 6:42 PM: :Greetings from Reel Recovery
Joe Gallo (to Organizer(s) Only): 6:42 PM: Take pictures Herb!
Jake Hannam (to Everyone): 6:46 PM: Procrit
Len Sierra (to Everyone): 6:46 PM: Procrit = erythropoietin
Bill Bradford (to Everyone): 6:47 PM: Thanks to all for listening to my story and providing great information. I will try to be a regular / frequent attendee to this group, as well as the U60 group. I did have one generic question for the group. I just started Zytiga + prednisone (in addition to the eligard I started 6 weeks ago). I know Zytiga is tough on the liver. I do enjoy a glass or two of wine each evening and a few beers on the weekend. Is it recommended to strictly abstain while on Zytiga?
Pat Martin (to Everyone): 6:47 PM: When I was anemic they prescibed Fe pills and licquid meds. All they did was constipate me. I brought it to my PCP she had me get a couple infusions.
Jeff Marchi (to Everyone): 6:49 PM: you can drink moderate amounts without issues, normally I drink a glass of wine or a beer every day, tests are good for liver and kidney dr never said to stop CONTINUED AT
Bruce Bocian (to Everyone): 6:50 PM: Pecking order at U of Chicago Adekunie “Kunie” Odunsi, Director Dr. Walter Stadler, Deputy Director, this is who I see.
Martin Wice (to Everyone): 6:54 PM: Have to go. Thank you.
Jake Hannam (to Everyone): 6:54 PM: I suggest you get a copy of the CD and ask for a 2nd opinion
John Ivory (to Everyone): 7:00 PM: I saw Szmulewitz at UChicago for a year (till my insurance didn’t work)–thought he was fantastic
Bruce Bocian (to Everyone): 7:00 PM: Good night!
Alan Moskowitz (to Everyone): 7:00 PM: Thanks Jake.
Joel Blanchette, Reston VA (to Everyone): 7:00 PM: Impression IMPRESSION: No definite marrow replacing lesion in the right occipital condyle. Focus of increased uptake on recent PET CT could be related to degenerative change. Multilevel degenerative changes in the cervical spine. Images and interpretation personally reviewed by: Arvin Kheterpal, MD
Bill Bradford (to Everyone): 7:00 PM: I have to drop off guys – glad to be part of the group.
Alan Moskowitz (to Everyone): 7:01 PM: Thanks everyone for your thoughts. Have to leave now.
Joe Gallo (to Everyone): 7:05 PM: joeg@ancan.org
Stephen Saft (to Everyone): 7:15 PM: I am going to say good night. I am exhausted. It is great to be part of these high level discussions. i appreciate the opportunity to listen and share. Good Night. Night.
Jake Hannam (to Everyone): 7:15 PM: Good to see you!
Ken (to Everyone): 7:22 PM: thanks guys…got to go! good job LenJ
Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Oct 12, 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: How do you explain to your medical team that AnCan is a great resource – some guys address that this week (unsolicited!!!)rd
Topics Discussed
High Risk diagnosis poses treatment questions; composing questions to ask your doc; addressing lung nodules; intestinal issues from enzalutamide???; testosterone is flowing back; talking to your medical team about AnCan; using Trimix; serial chemo may not be working; Caregiver has dad resisting treatment; trouble switchng medical oncologists.
Chat Log
Sylvester Mann (to Everyone): 3:32 PM: Good seeing you also. I’m doing ok. I have not been attending because I get the time mixed up plus I not usually home at this tine (smile).
Herb Geller (to Organizer(s) Only): 3:40 PM: So I got into Reel Recovery for next Monday. https://reelrecovery.org
Jake Hannam (to Organizer(s) Only): 3:41 PM: Congrats! Have fun!
Bill Franklin (to Organizer(s) Only): 3:42 PM: Man! Rick told me about that and I looked at it but will have to plan carefully in order to get in there. I hope you have a great time!
