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:
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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!
On October 6th, we had Sanoj Punnen, MD (Co-Chair of the Genitourinary Site Disease Group at the Sylvester Comprehensive Cancer Center, University of Miami, Miller School of Medicine) give a talk to our AS group titled “The Current State of Active Surveillance and How Active It Needs to Be”
Dr. Punnen said MRIs are playing an increasing role in diagnosing prostate cancer. He said MRIs must be performed before biopsies to target lesions.
“Get an MRI before a biopsy”, he stressed. ”MRI more likely do a better job of finding lesions appropriate for active surveillance.”
He said genomic and genetic testing can provide reassurance that AS is a safe path for individual patients.
He said he has long preferred transperineal biopsies over the so-called “gold standard” transrectal biopsies that carry a risk of deadly and disabling sepsis.
Dr. Punnen said if the MRI “looks good,” biopsies may need to be performed every three to five years rather than the annual biopsies that used to be performed in AS.
“One protocol will not fit all. Some need intense follow-up but some don’t,” he said.
Watch here:
Slides will be posted when available.
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.
