Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 15, 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: This week some guys have multiple GU med oncs, others have none, and some question theirs. Be sure you have at least ONE GOOD ONE!! (rd)
Topics Discussed
Metastatic disease stabilizes for 4 years; disease progresses for young man not treated that aggresively early; abi vs enz; starting darolutamide; moving to a GU med onc; confusion reading Pylarify; recurrence ‘AGAIN’; trust your good GU med onc
Peter Kafka (to Organizer(s) Only): 6:30 PM: Jonathan Starr has been a very active advocate and regular with the Advanced support group in Palo Alto. Very knowledgable and helpful to many others. I have met Jonathan several times over the years, in person and online
Jake (to Organizer(s) Only): 6:35 PM: Great turnout tonight! 46
AnCan – rick (to Jonathan Starr): 6:48 PM: Jonathan – please give Terry my best next time you see him. And big WELCOME
eric (to Everyone): 6:49 PM: Hey I’m from Rochester, NY. Welcome
AnCan – rick (to Jonathan Starr): 7:12 PM: Ever heard of 10x docetaxel off the bat
Jonathan Starr (Private): 7:13 PM: No, I have never heard of more than 6 sessions, unless it is at a reduced dosage and higher frequency.
Jake (to Organizer(s) Only): 7:25 PM: abi after enz or vice versa?
Len Sierra (to Everyone): 7:38 PM: Alan, this article discusses the comparison of enzalutamide, apalutamide and darolutamide. It’s for nmCRPC, but it would apply to mCRPC also. https://pubmed.ncbi.nlm.nih.gov/34054…
Rich Jackson (to Everyone): 7:44 PM: Was just looking at two insurance plans and none of the ..lutamide’s above were listed. Wondering about pricing? Peter Kafka (to Everyone): 7:47 PM: It is my understanding that an MRI can’t determine if a tumor is prostate cancer or something else. It can show that something is present but not diagnose what the pathology is
Peter Monaco (to Organizer(s) Only): 7:48 PM: Rich – I checked enzi and abi in June – both cost about $2000 per month through my plan with WellCare/CVS. I eventually was able to get abby through Mt. Sinai’s specialty pharmacy for $55 per month.
AnCan – rick (to Everyone): 7:48 PM: Correct Peter – i would agree
Alan Moskowitz (to Everyone): 7:49 PM: Len, Thanks for the article.
Rich Jackson (to Organizer(s) Only): 7:49 PM: Don’t have a need for them, yet. But was looking to see what the future may hold. Thank you Peter.
Alan Moskowitz (to Everyone): 7:49 PM: Rich Jackson- sometimes those drugs are listed under brand names rather than the generic names.
AnCan – rick (to Everyone): 7:50 PM: All the 2nd line AA’s can be found with subsidies from many different places
Rich Jackson (to Everyone): 7:50 PM: Didn’t look for brand names. Will try those. Thank you.
David Muslin (Private): 7:56 PM: Current treatment:10.17.20 Abiraterone + Pred on hold since 7/15/2021
Edward Clautice (to Everyone): 7:57 PM: Even on 40. skip right thruogh Amarillo – it smells really bad
Mark Perloe, MD Atlanta (to Everyone): 7:58 PM: Darn, we plan Little Rock the first day. Then Amarillo, then Flagstaff. I hope our dog coooperates.
Alan Moskowitz (to Everyone): 8:05 PM: Need to leave, thanks again for the guidance.
Len Sierra (to Organizer(s) Only): 8:12 PM: I’ve got to drop off, guys. Great job, Herb. See you next week!
Edward Clautice (to Everyone): 8:15 PM: thanks – gotta go
Joe Gallo (to Organizer(s) Only): 8:17 PM: She should watch Epstein video on our site
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
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
