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 4, 2021
(Apologies for the multiple confusions re. links and disappearing videos on YouTube! Thanks to RS for the heads-up and hopefully we have resolved and this works fine: rd)
2 survey opportunities still open …… and AnCan receives a donation for each approved respondent.
……. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a…
…… if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat…
Editor’s Pick: Lots of talk this week about switching docs and when to get a GU med onc involved.(rd)
Topics Discussed
Chemotherapy and mood swings; exercise duing chemo; can you avoid HT with advanced disease?; when’s the time to switch to a GU med onc?; Pylarify vs Ga68 PSMA R11; with advanced disease, is 0.298 a low enough nadir?; 2nd pembro dose after cytokine storm; pancreatic spot stable; 1st cabazitaxel tolerable; daily prednisone w. chemo???; GU med onc refuses to measure testosterone; using ibuprofen
Chat Log
Len Sierra (to Everyone): 5:37 PM: Genitourinary
Alan Moskowitz (to Everyone): 5:51 PM: Just an update on the availability of Pylarify PSMA scans, Mt Sinai Hospital in NYC has just received written confirmation (Wednesday Sept 29) that Medicare will cover the standard 80% of the cost. They are currently scheduling. You can find out more by calling their PET/CT Nuclear Medicine lab at 212-241-7775. I was also advised that Medicare supplement insurers legally must pay their share if Medicare covers their share.
Stephen Saft (to Everyone): 5:52 PM: That is great! Thanks for the information.
Stephen Saft (to Everyone): 6:16 PM: I agree that people with prostate cancer should go to a Medical Oncologist that specializes only in Prostate Cancer. They are conversant with all of the research and new developments. There are new developments every day.
Stephen Saft (to Everyone): 6:18 PM: What is an R11 Scan?
Alan Moskowitz (to Everyone): 6:23 PM: Rick said the R11 relates to the Gallium PSMA scan available only in 2 California sites.
Stephen Saft (to Everyone): 6:30 PM: I heard that. I believe that Gallium 68 is the more common name for that scan. (NB…. there are several different ligands married to Ga68 that seek out PSMA. R11 is the FDA approved one at UCSF and UCLA. There are other ligands like R617 still awaiting approval. rd)
Joe Gallo (to Everyone): 6:32 PM: PSMA PET PYL is/will be more available as compared to Gallium-68 which requires a radionuclide generator on site due to limited half-life.
Jake Hannam (to Everyone): 6:33 PM: Good point, Joe.
Ted Healy- Portland, OR. (to Everyone): 6:58 PM: Gotta go folks. Thank you be safe!
Rick Davis (to Everyone): 6:59 PM: tx for your advice to Christo Ted
Joe Gallo (to Everyone): 7:06 PM: Nick is Dr. Berengi’s admin. He will give you the details and schedule. He is a very easy going guy. Probaby easier to contact. However Dr B is also a very personable guy and willing to talk.
Herb Geller (to Everyone): 7:18 PM: I gotta go. See you next week.
Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Sep 28, 2021
2 survey opportunities still open …… and AnCan receives a donation for each approved respondent.
…. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a
…. if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat .
Editor’s Pick:On a serious note, the discussion around how much HT with salvage radiation. On a fun note, Rusty’s experiecne at Reel Recovery and Jerry D’s fish take the bait! (rd)
Topics Discussed
Community cancer center provides sub-optimal advanced care; what’s the right duration for hormone therapy with salvage radiation; BAT and Xofigo whilst waiting for Lu177; switching docs … and will IHT be next?; wack-a-mole spot RT vs systemic treatment; Double J stents anyone? (let us know at info@ancan.org); visiting the military golf course; fun cancer retreats
Chat Log
Alan Moskowitz (to Everyone): 3:11 PM: This is the radiology lab that does Pylarify scans. https://www.woodburnmed.com/our-services. James Marshall, their coordinator said they have worked out the requirements and details to obtain Medicare coverage, and for major secondary insurers. They have done 70 Pylarify scans so far and consider themselves as leading edge. they are in Virginia, near the Washington DC area. They were the first to do Axumin scans in the DC area.
Herb Geller (to Everyone): 3:13 PM: I looked at their web site and they seem to be well prepared
Joe Gallo (to Organizer(s) Only): 3:26 PM: If Gary is a Vet he can still get the PSMA PET Pyl at no cost at the LA VA (UCLA)
Herb Geller (to Everyone): 3:29 PM: Gary could easily get to National Airport and then to the center in Annadale for a scan
Pat Martin (to Everyone): 3:34 PM: When I went off 2*5; I went cold turkey. Did not seem to cause any problems. Sometimes I just ignore side effects
AnCan – rick (to Everyone): 3:35 PM: Pat – you are very lucky. I had a friend who lost 30 lbs or more and lost his appetite for months.
Bruce Bocian (to Everyone): 3:40 PM: I got my G68 at U of M
Jake Hannam (to Everyone): 3:43 PM: Next meeting is Monday at 8:00 PM EST
Pat Martin (to Everyone): 3:46 PM: Dr. Lin is my Uro/Onc. I have the utmost regard for him.
Ben Nathanson (to Everyone): 3:50 PM: Assessing the Role and Optimal Duration of Hormonal Treatment in Association with Salvage Radiation Therapy After Radical Prostatectomy: Results from a Multi-Institutional Study https://www.europeanurology.com/article/S0302-2838(19)30112-5/fulltext (AnCan has full text – info@ancan.org)
Herb Geller (to Organizer(s) Only): 3:55 PM: Thanks, Ben. Very nice study.
David Muslin (to Everyone): 3:55 PM: Mark, I know how hard it is to be on ADT however, it’s great insurance not to have a recurrence.
Joe Gallo (to Organizer(s) Only): 3:56 PM: Off to the 50 Vets call. Goodnite.
Pat Martin (to Everyone): 3:59 PM: I have a similiar Dx with a Gl-9(5+4) in 2014, radiation. Was on ADT for 30 months. A vacation then PSA started rising. Now I’m back on ADT. Have Keytruda as a back up.
Herb Geller (to Organizer(s) Only): 4:00 PM: I’m on denosumab and bone density actually went up in a year.
AnCan – rick (to Everyone): 4:13 PM: Schweitzer is good, younger GU med onc. He knows AnCan – has done a seminar.
Pat Martin (to Everyone): 4:16 PM: I’ve mentioned AnCan to him a lot of the times I’ve seen him…4x a year for the last 7 years.
AnCan – rick (to Everyone): 4:23 PM: Gents …… we featured an article on agonist vs antagonist LHRH and their CVD impact back in 9/14/21 Reminder
John Ivory (to Everyone): 4:49 PM: I was asked to be an Orgovyx ambassador, but they wanted me to give access to my medical records for the agency that runs it; I decided to pull out. Didn’t want non-clinicians in my medical records
On September 29th, we hosted the webinar “Prostate Cancer – Active Surveillance and More…Past, Present, and Future“.
Featuring Laurence Klotz, MD, a pioneer in developing active surveillance and other areas dealing with prostate cancer, told a webinar about his journey as a urology researcher at Sunnybrook Health Sciences Center in Toronto. With over diagnosis and overtreatment of prostate cancer in the 1990s with the introduction of screening PSA testing, he and his colleagues set out to develop a new strategy of close monitoring of men with low-risk Gleason 6 prostate cancer.
He sees rapid advance of introduction of highly accurate “liquid biopsies” that focus on DNA shed in urine by tumors. He sees great potential in focal therapy.
Watch it all here:
Special thanks to Myovant Sciences – Pfizer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.
We apologize, but slides are not available for this webinar.
For information on our peer-led video chat PROSTATE CANCER VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
