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
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
On October 27th, we had our beloved friend Elliott Kerman!
Elliott was a founding member of the a capella group, Rockapella. Over the18 years that he was the group’s baritone, they toured extensively throughout the US and Japan, made numerous records, appeared on a number of TV and Radio commercials, and were the house band on the 295 episodes of the hit PBS kids TV show “Where in the World is Carmen Sandiego?”
His first love was jazz; he grew up listening to his Mom’s extensive jazz record collection. After he left Rockapella, he fronted a jazz combo for several years, performing a mix of his original compositions and jazz standards. Since then, he’s been working as an accountant in the Film & TV business.
Elliott preformed some jazz standards, and some of his own original compositions live on the piano.
Watch here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
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.
