Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 23, 2021

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 23, 2021

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording  2/23/21

Editor’s Pick: For our Vets this week, a vigorous discussion around using the VA, why to dual enroll, and Agent Orange.(rd)

Topics Discussed

Recurrence after Focal Laser Ablation; ARV-110 trial; high urea & creatinine; sacrocranial massage; estradiol patches; ProTER Lu177 PSMA trial; relugolix; enroll at the VA as well as your civilian provider; Agent Orange; electrostimulation for incontinence; restarting ADT when it was tough first time; exercise, ADT and Donna Wilson!; lasting as long as you can before starting ADT; artifical urinary sphincter procedure;; BiTE trials; Dr. Charles Drake – where are you?

Chat Log

Bill Franklin (to Organizer(s) Only): 4:00 PM: Really!? 15 slides? It didn’t seem like that many. 🙂 $75.00 already donated via PayPal.

AnCan – rick (to Everyone): 4:22 PM: Dennis McGuire is now with us!!!

Jake Hannam (to Everyone): 4:31 PM: Axumin PET/Ct Herb Geller (to Everyone): 4:36 PM: This trial NCT03939689 has MD Anderson as a site and used PSMA PET imaging

Julian Morales (to Everyone): 4:41 PM: Thank you Jake and Herb!

Pat Martin (to Everyone): 4:47 PM: What is Carl’s PSADT? That could tell him when he’ll fit the 4.0 threshold correctly.

Paul Freda (Private): 4:56 PM: For a long long time we’d have 20 – 25 show up. But recently I am seeing numbers >30 and tonight we hit 40. First time I have seen that.

Bob McHugh (to Everyone): 5:06 PM: PSMA avid?

Pat Martin (to Everyone): 5:17 PM: They have enlarged it to MOST bases as they used Agent Orange throughout to control vegetation. VFW posts usually have someone on site to help with the paper work

Jake Hannam (to Everyone): 5:21 PM: ty Pat

AnCan – rick (to Everyone): 5:25 PM: http://www.uroplasty.com/

AnCan – rick (to Everyone): 5:26 PM: DAV Disabled American Veterans is also a great source …. <http://www.dav.org/>

Jim Marshall – Alexandria, VA (to Everyone): 5:28 PM: IT is said 18M+ gallons were dumped all over Vietnam over 11 years. Have an analysis of where, when, what and ho wmuch was dumped if anyone is intersted. send me an e-mail at Marshall-james@Comcast.Net Got it from Agent Orange Lawsuit. AF-Ret, 200% VA Disabled.

Mark Perloe (to Everyone): 5:29 PM: Can they use abiraterone and prednisone alone? They should block testosterone from the testicles as well.

Mark Perloe (to Everyone): 5:31 PM: Peloton each morning helped with brain fog and weakness.

Herb Geller (to Everyone): 5:31 PM: But there should be no difference in side effects

Frank Fabish (to Everyone): 5:33 PM: I need to drop off. Thank you. See you next Monday.

Mark Perloe (to Everyone): 5:41 PM: Absolutely Jimmy. Aerobics is not enough. It helps endurance, but cardioprotection comes from building and protecting muscles.

Mark Perloe (to Everyone): 5:41 PM: You can use bands, or dumbells.

Pat Martin (to Everyone): 5:43 PM: Lifting also strengthens your bones

Jimmy Greenfield (to Everyone): 5:43 PM: Definitely!

John Ivory (to Everyone): 5:47 PM: Yes. My mind never wants to believe that exercise will help, and it protests, but both resistance and cardio both give me energy. I usually don’t need a nap on days that I exercise.

Alan Moskowitz (to Everyone): 5:50 PM: To those who do muscle strengthening while on hormone therapy, how hard and how long and how frequently do you do weight training / band training exercise? I hesitate even how, pre-ADT, to push myself too hard because of muscle strain, arthritis, etc.

Jim Marshall – Alexandria, VA (to Everyone): 5:51 PM: Exercise has been my slavation, biking almost every day just tooling around the local area for 30-45 minutes, Plus hydration around 60 fluid oz per day. Eat frozen grapes to mitiage hot flashes. Also works with chunks of frozen banannas.

John Ivory (to Everyone): 5:52 PM: Thanks for the info, Rick. I listened to the talk today and have some taps open to check out her exercises.

Pat Martin (to Everyone): 5:53 PM: I’ve been in ADT twice so for and usually use a weight that I can rep 15 times and then do 3 sets. My MO got on me when I would slack off and explain to him I didn’t have any T. You won’t be building muscle, mainly maintaining.

John Ivory (to Everyone): 5:53 PM: https://ancan.org/keep-movin-donna-wilson-rn-msn-rrt-webinar/ @Pat Martin, I hadn’t done resistance training before and started with this easy routine from PCRI https://pcri.org/sky-2/2017/9/19/fitness-and-longevity-rylt4

Jerry Pelfrey (to Everyone): 5:55 PM: I exercise every day in the morning. Treadmill for one hour which is about 3 miles. As I am walking I use 3 lb weights and do upper body work. Pat Martin (to Everyone): 5:55 PM: I watched a presentation from them today.

Len Sierra (to Everyone): 5:55 PM: Thanks for the link, John Ivory!

Pat Martin (to Everyone): 5:55 PM: Good group.

John Ivory (to Everyone): 5:55 PM: NP, want to check it out myself! 🙂

Jimmy Greenfield (to Everyone): 5:57 PM: Building muscle is tough at our age even without supressed T. You can get it done with light weights, bands, calisthenics etc but you have to do a lot of repetitions.

Mark Perloe (to Everyone): 5:57 PM: how long do you continue prednisone after stopping abi.

AnCan – rick (to Everyone): 5:59 PM: stop slowly Doc ……. you know that

Jimmy Greenfield (to Everyone): 5:59 PM: but it’s good for everybody!

Alan Moskowitz (to Everyone): 6:04 PM: thanks for the comments on exercise.

Mark Perloe (to Everyone): 6:06 PM: Thanks. They always say that CYP17 inhibitor is irreversible.

Mark Perloe (to Everyone): 6:06 PM: Anyone have an idea on Jeffrey Turner? My oncologist left the practice and I can’t get an answer from them.

Pat Martin (to Everyone): 6:07 PM: I stopped taking Abi and Prednisone at the same time. Didn’t notice any SEs.

David Muslin (to Everyone): 6:07 PM: Got to go guys. See you next week.

Jimmy Greenfield (to Everyone): 6:07 PM: Alan get a trainer if you’re unsure, but in general you’re going to hurt yourself far more backing off than to do it. I use a pulse rate monitor also

John Ivory (to Everyone): 6:08 PM: Jimmy, how much should a trainer cost and how often do you use yours?

Herb Geller (to Everyone): 6:08 PM: Charles Drake is VP of Immuno-oncology at Janssen.

Mark Perloe (to Everyone): 6:08 PM: Thanks. I’d be most grateful.

8 Tips for Cancer Caregivers

8 Tips for Cancer Caregivers

Wendy Garvin Mayo, APRN, RN is really popular in the AnCan universe! While you’ll find her at our Cancer Caregivers Virtual Support Group meetings, her resources and wisdom often pops up in many of our groups.

Wendy had a great blog post to share from our friends at Cure. Titled “The Cancer ‘Bombshell’: 8 Tips for Devoted Caregivers“. With great practical advice and commentary, we’re sure you will find this incredibly helpful. My caregiver, my mom Lisa, will especially appreciate tip number 8. Hint: it’s about her favorite food.

For information on our peer-led video chat CANCER CAREGIVERS 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

Consequences of Compromised Health Care

Consequences of Compromised Health Care

Consequences of Compromised Health Care

This week, Peter Kafka considers how the constraints on providing health care during the pandemic may have long term consequences.

As an editorial note, we now see how discouraging PSA testing has come back to haunt us. The American Cancer Society projections for new prostate cancer cases in 2021 have leapt 30% from 2020 to 2021 reaching ca. 249,000.  Ancan puts it down largely to built-up backlog due to lack of testing. (rd)

As I sit down to compose this reminder notice for our upcoming meeting, I am very much aware that here in the USA this weekend we will probably reach the milestone of half a million recorded deaths from Covid-19 in the year since the first deaths were reported.  Regardless of how you might process numbers such as this, one thing for sure is that this Pandemic has flipped much of our healthcare system on its head and that impacts all of us.  And of course, this is not only true in the US, but throughout the world.

Just the other day, “I heard it through the grapevine… that my medical oncologist (for the past 6-1/2 years)  would no longer be mine”.  Yes, the thriving practice that he was such an integral part of began losing so much money this past year that he had to depart for his own financial security.  Many independent medical practices are struggling as are hospitals that depended upon elective surgery and emergency room visits to remain financially viable.  People just aren’t going to the doctor the way they used to in 2019.

Men were notorious for avoiding doctors even before this pandemic.  But now it is amplified.  For those that are healthy and young the impact is minimal.  But for those who are older and have increased risk of serious illness and disease such as cancer, the impact on both men and women is considerably higher.  Statistics are now rolling in comparing the diagnosed incidence of various cancers in 2020 to the totals of 2019 BC (Before Covid).  The difference is substantial and not just a statistical fluke.   Someone might take this to mean, “Great, cancer rates are dropping”!  But unfortunately, this is not the case.  Men and women are forgoing routine screening and testing for cancer for fear of going to hospitals, clinics and doctors.

Unfortunately, the implication is that in the months and years ahead there may well be a significant rise in the number of cancer cases that have advanced to a more serious metastatic stage because of a decline in early detection and early treatment.   While the incidence of seasonal flu has slowed way down in this age of Covid-19, prostate cancer as well as other cancers and serious illness are still chugging along at the same clip, but just not being diagnosed.  So, I think I will leave it there for you to draw your own inferences.  If it were me, I would encourage anyone I know not to ignore symptoms and concerns about their health even if it is more difficult to get medical help.

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 23, 2021

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 9, 2021

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 9, 2021

 

Editor’s Pick: We love GOOD NEWS – so when a ‘young’ man diagnosed denovo metastatic receives a visit from NED (No Evidence of Disease) 9 months after starting treatment , we are thrilled! (rd)

Topics Discussed

why are you waiting on Provenge; more on what to do at 1st recurrence; RP complications impact follow-up treatment; Dr. Efstathiou …. & Dr.Turner; rejected for REGN5678 – you heard it here first!!; young denovo Mx man is NED – yeah!!; Axumin scan; nodules suggest salvage RT; rare GU med onc switch at MSKCC; more lesions suggest chemo rather than spot RT; what to expect from ADT; Eligard, Lupron … or maybe just Coivid19?; how about adding a PARP-I to abi if you’re BRCA+?

Chat Log

Jake Hannam (to Everyone): 6:42 PM: Alan H. Bryce

Jake Hannam (to Everyone): 7:07 PM: https://ancan.org/

Len Sierra (to Everyone): 7:14 PM: Abiraterone acetate with prednisone, 5mg, twice daily or dexamethasone, 0.5mg, once daily met the prespecified threshold for the primary end point. abiraterone acetate with prednisone, 5mg;once daily or 2.5mg twice daily did not meet the threshold Here are the numbers for months of radiographic progression-free survival for each group: Dexamethasone: 26.6 months; Prednisone 5mg twice daily: 18.5 months; Prednisone 5mg once daily: 15.3 months; Prednisone 2.5mg twice: 12.8 mo. Full article on safety and efficacy of glucocorticoid regimens used with Zytiga/abiraterone https://jamanetwork.com/journals/jamaoncology/fullarticle/2737089

Jake Hannam (to Everyone): 7:25 PM: ty len

AnCan – rick (to Everyone): 7:33 PM: Peter Van Veldhuizen – Wilmott Rochester

AnCan – rick (to Everyone): 7:36 PM: https://ancan.org/safety-of-glucocorticoid-regimens-in-combination-with-zytiga-for-mcrpc-patients/ This is Len’s AnCan post

Peter Kafka (to Everyone): 8:09 PM: Jump rope is great

Tracy Saville (to Everyone): 8:09 PM: have a good night everyone. i have to run.

Peter Kafka (to Everyone): 8:11 PM: I agree. Elligard sucks

Frank Fabish (to Everyone): 8:21 PM: See you next week guys.

Pat Martin (to Everyone): 8:28 PM: Good night all

Special Presentation: Genetics Counseling and Prostate Cancer

Special Presentation: Genetics Counseling and Prostate Cancer

On February 3rd, we had the most pleasure of hosting Lindsey Byrne, MS, CGC  (Licensed Genetic Counselor at The Ohio State University Wexner Medical Center) at our Active Surveillance Virtual Support Group. She is one of the few genetic counselors in the United States specializing in prostate cancer. Genetic counseling and testing are not only important for men with prostate cancer but to their children, siblings and potentially other family members. The information presented can benefit anyone in the Prostate Cancer arena, not just AS!

We here at AnCan want to sincerely thank Lindsey for providing this amazing resource to our community.

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.

Dr. B.J. Miller’s Prognosis Declaration Can Revolutionize the Quality of Your Treatment Path

Dr. B.J. Miller’s Prognosis Declaration Can Revolutionize the Quality of Your Treatment Path

Dr. B.J. Miller’s Prognosis Declaration Can Revolutionize the Quality of Your Treatment Path

One of the most compassionate, influential and remarkable docs I have had the great fortune to encounter since I got into this biz, is Dr. BJ Miller. We are honored to have BJ on our Advisory Board, and while we rarely speak live, I consider him a friend.

More significantly,  a couple of men lost to this disease who I have known well, welcomed BJ to their medical teams …. and he made a huge difference to them. In a recent webiinar “Making Medical Decisions”, BJ shared a revolutionary document with us  ….BJ’s Prognosis+Declaration

All too often medical teams put their foot in their mouth …. and sometimes unwittingly yours, when they provide an unrequested prognosis for your situation. Some may want to know how serious their disease is .. or how long they have to live; others frequenbtly do not. The Prognosis Declaration offers four (4) options from knowing everything to knowing nothing, or maybe having your caregiver know but not you. You determine what you want to hear, and you give the Prognosis Declaration to your medical team upfront ….. brilliant! The form was developed by one of BJ’s patients who lost his wife to cancer.

The whole webinar, Managing Your Medical Decisons, can be heard here – it’s truly worth a listen.

Dr. Miller, btw, now runs his own non-profit organization The Center for Dying and Living. For many years he has been on the clinical and teaching faculty at UCSF. BJ’s remarkable TED Talk, ” What Really Matters At THe End of Life” now boasts over 12 million views.

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 23, 2021

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 9, 2021

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 9, 2021

Editor’s Pick: Dr. BJ Miller’s Prognosis Directive may change how you handle your diagnosis and treatment path! (rd)

Topics Discussed

denovo metastatic treatment; comparing liquid vs solid tissue Bx for sequencing; BJ Miller’s Prognosis Declaration; high risk Dx dilemma; how quickly does T return; exercsie training during chemo; ischemic brain image; Lu177 PSMA R2 PROter Trial; symptom management discussion; relugolix; cumulative ADT impact; ADT effective

Chat Log

Jake Hannam (to Everyone): 4:07 PM: nothing for me – FMI liquid biopsy tomorrow

Bob McHugh (to Everyone): 4:09 PM: I have Dr. Oh as well.

Pat Martin (to Everyone): 4:10 PM: Axumin scan scheduled for 03/04. 03/05 Lupron to restart.  Still waiting to see if imunotherapy will work for me.

Bob McHugh (to Everyone): 4:18 PM: Been seeing Oh since ’15

Bill Franklin (to Organizer(s) Only): 4:20 PM: I have seen more than 30 on the screen with cameras on.

Jake Hannam (to Organizer(s) Only): 4:20 PM: limit was 25 last week too

Ken A (Private): 4:22 PM: rick i hope you will bring up the bj miller form

AnCan – rick (to Ken A): 4:22 PM: trying to when i get in

John Ivory (to Everyone): 4:25 PM: Thanks for the news re: the liquid biospy, Rick. Here’s the announcement https://bit.ly/3pcyDTa and for the nerds, the ASCO poster https://bit.ly/2Z2W4Dy

AnCan – rick (to Everyone): 4:27 PM: Tx John

Ken A (Private): 4:30 PM: 30 per Paul

Bob McHugh (to Everyone): 4:44 PM: ElizabethRiley(Riley)KesslerMD; Oncology • Aurora, CO; Genitourinary Oncology, Hematologic Oncology

John Ivory (to Everyone): 4:44 PM: Elizabeth Kessler https://som.ucdenver.edu/Profiles/Faculty/Profile/21572

Jake Hannam (to Everyone): 4:48 PM: Axumin PET/CT

Pat Martin (to Everyone): 4:50 PM: Another question…How many cores positive?

AnCan – rick (to Everyone): 4:50 PM: Tx Gents

John Ivory (to Everyone): 4:54 PM: I guess I’m Mr. Chat today. Following up on Rick’s mention of whether men want to know their prognosis, he wrote a wonderful article about it here (acknowledging Len as well): https://ancan.org/required-reading-if-you-think-your-condition-is-life-threatening/

AnCan – rick (to Everyone): 4:59 PM: SBRT compared to other RT modes ….. Allen Edel (@tallallen) https://www.prostatecancer.news/2021/01/sbrt-for-high-risk-patients.html

Bob McHugh (to Everyone): 5:04 PM: No one mentioned proton therapy. Is that an option?

AnCan – rick (to Everyone): 5:06 PM: Not really, Bob …… because it will involve the same number of treatments as IMRT.

Bob McHugh (to Everyone): 5:07 PM: It used to be sold as more accurate and therefore less risk of side effects?

AnCan – rick (to Everyone): 5:08 PM: Some better side effects, some worse side effects

Bob McHugh (to Everyone): 5:09 PM: Understood

Jimmy Greenfield (to Everyone): 5:17 PM: Relugolix

Bob McHugh (to Everyone): 5:20 PM: https://www.acsm.org/get-stay-certified/get-certified/specialization/cet

John Ivory (to Everyone): 5:26 PM: Thanks, Bob & Rick. Here’s how to find a certified trainer in your area certifed cancer trainer in your area. https://certification2.acsm.org/profinder

Tracy Saville (to Everyone): 5:26 PM: have to jump a bit early. thanks, guys.

Pat Martin (to Everyone): 5:26 PM: I tried to get in Flu-BLAST study.  Too fast of PSADT. But my med/onc is going to use same protocol as SOC.

John Ivory (to Everyone): 5:44 PM: I’m going to be joining an 8-week discussion group for cancer patients called Meaning-Centered Psychotherapy through Northwestern Hospital. I’m not sure when it will start bc  they’re still recruiting for it. They said it was free (not sure if it’s because I’m a patient there). Here’s the link: https://bit.ly/3oidjLs

Joe (to Everyone): 5:47 PM: I see a PsychOncologist at UCH and we did the Meaning Centered work based on the ideas of Viktor Frankl.  It was and is amazingly helpful for me.

John Ivory (to Everyone): 5:48 PM: Yes, Joe–same source. Thanks.

Joe (to Everyone): 5:49 PM: I think it was started by a fella at Sloan Kettering named Bill Breitbart….called him up and thanked him.  My psych was one of his students.

Joe (to Everyone): 5:52 PM: gotta run….great to see veryone and helpful as always

John Ivory (to Everyone): 5:53 PM: Thanks, Joe. Here’s a good overview of Breitbart’s work

Joe Murgia (to Everyone): 5:53 PM: I priced ORGOVYX (relugolix) today on my Medicare Advantage site. It was around $1750.00 for 90 days at my local pharmacy. I was surprised it was that low.

Len Sierra (to Everyone): 5:54 PM: I agree, Joe — that is surprisingly low!

Herb Geller (to Everyone): 5:55 PM: Still not cheap

John Ivory (to Everyone): 5:55 PM: Joe M. I’m guessing that ORGOVYX has a financial benefit of not needing to be administered by a HCP (though that makes it a drug, not a procedure)

John Ivory (to Everyone): 5:57 PM: Funny anecdote–the week when my preapproval was in process for ORGOVYX, I didn’t remember the name of the drug bc I was sure I wouldn’t be approved. That week I did a market research study, and it turned out to be for ORGOVYX! So far I’m up a couple hundred bucks on it.

Joe Murgia (to Everyone): 5:58 PM: I will double check again tomorrow to make sure I did not misread the website pricing. If my Casodex monotherapy stops working, I’ll be considering Orgovyx.

Len Sierra (to Everyone): 6:01 PM: Joe, if you’re doing monotherapy, you’re better off with one of the newer AR blockers, like Xtandi, Erleada or Nubeqa.  They have lower incidences of gynecomastia than Casodex.

John Ivory (to Everyone): 6:02 PM: Thank you Peter M. & Jake! I watch those videos sometimes.

Wang Gao Shan (to Everyone): 6:03 PM: Yes… Thank You Peter & Jake

Peter Monaco (to Everyone): 6:04 PM: Glad to help!

Jake Hannam (to Everyone): 6:09 PM: fyi – Peter M. does all the recordings now. I’m just his backup now.

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 23, 2021

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 1, 2021

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 1, 2021

Editor’s Pick: Deciding on the best trial for you can be a challenge! (rd)

Topics Discussed

Denovo Mx Dx controlled w. abi on recurrence; GU med onc arrives late with recurrent disease challenge; ARROW trial for I-131, monoclonal antibody and enz; chemo compromises taste; after PSA of 3000, stable at less than 0.1 2 years later; does vaccine help your immune system; ganglion on shoulder; what’s teh best trial for Carl’s BRCA driven Pca?; artificial sphincter comes into play

Chat Log

Pat Martin (to Everyone): 6:04 PM: I saw a study that introduced stress to mice by…isolating them. I thought that was what this lockdown was meant to prove.

Peter Monaco (to Everyone): 6:07 PM: Still on track to leave for FL. Snow ends tomorrow so roads should be OK by Thursday.

Peter Kafka (to Everyone): 6:10 PM: New members should put their emails in the chat window. That would be helpful.

Michelle Amemiya (to Everyone): 6:13 PM: I am here on behalf of Steve Linett. Just going to listen. Thank you!

Herb Geller (to Everyone): 6:24 PM: Prostate Next seems to be for germline mutations according to their web site

Tracy Saville (to Everyone): 6:28 PM: i’m having same process done next month as part of a clinical trial.

Jake Hannam (to Everyone): 6:29 PM: SBRT – stereotactic body radiation’ therapy

Jake Hannam (to Everyone): 6:57 PM: Axumin PET/CT

Jake Hannam (to Everyone): 7:03 PM: Emmanuel S. Antonarakis, M.D.. Professor of Oncology and Urology, Johns Hopkins University

Joel Blanchette (to Everyone): 7:04 PM: JH GU Med Oncs: Michael Carducci, MD (https://www.hopkinsmedicine.org/profiles/results/directory/profile/0006406/michael-carducci) Samuel Denmeade, MD (https://www.hopkinsmedicine.org/profiles/results/directory/profile/0007191/samuel-denmeade) Emmanuel Antonarakis, MD (https://www.hopkinsmedicine.org/profiles/results/directory/profile/9451649/emmanuel-antonarakis) Mark Markowski, MD PhD https://www.hopkinsmedicine.org/profiles/results/directory/profile/6570385/mark-markowski Channing Paller, MD https://www.hopkinsmedicine.org/profiles/results/directory/profile/3138167/channing-paller Catherine Handy, MD https://www.hopkinsmedicine.org/profiles/results/directory/profile/10003341/catherine-handy

Rick Medley (to Everyone): 7:12 PM: Note I did the Provenge immunotherapytreatment in January 2020. I had extensive genitics analysis with zero genetic history of cancer.

Pat Martin (to Everyone): 7:13 PM: ARRIS study???

Rick Davis (to Everyone): 7:14 PM: ARROW study

Pat Martin (to Everyone): 7:15 PM: thanks

Rick Medley (to Everyone): 7:24 PM: I have really enjoyed gentle (Hatha) yoga

Frank Fabish (to Everyone): 7:27 PM: Thanks all

Rick Medley (to Everyone): 7:33 PM: Provenge immunotherapy is specifically for prostate cancer to build up your body’s own t-cells

Peter Kafka (to Everyone): 7:33 PM: I get my second Moderna shot on Friday.

Rick Medley (to Everyone): 7:35 PM: In talking with a nurse from the maker of provenge she said they have no markers for whether its working or not.

Pat Martin (to Everyone): 7:44 PM: What was the trial that was mentioned?

Herb Geller (to Everyone): 7:47 PM: Regeneron – NCT03972657

Joel Blanchette (to Everyone): 7:54 PM: Dr. Leach, Tower Urology CA

Carl Forman (to Everyone): 7:59 PM: related to Robin Leach?

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 23, 2021

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Jan 26, 2021

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Jan 26, 2021

Editor’s Pick: What to do when your doc gives you a pink slip. …. and a very exciting BiTE trial with REGN5678! (rd)

Topics Discussed

Late stage treatment options; how PCa effects your exercise regime; what next after docetaxel stops working; SBRT for spot and gland Tx; PSA as a marker; handling pain from chemo; issues around unblinding a clinical trial; medical marijuana; handling constipation from pain meds; when youd doc kicks you out ….; meaning of MSI grades; hip replacement with bone mets; markers for small cell/NE PCa; exciting BiTE trial with REGN5678; resuming Tx after IHT;pill LHRH relugolix/orgovyx prescribed; Lupron vs Eligard

Chat Log

Ancan – rick (to Everyone): 4:28 PM: Kampel https://www.mskcc.org/cancer-care/doctors/lewis-kampel

Ancan – rick : 4:39 PM: https://ancan.org

Jim Ward (Private): 4:40 PM: HI Rick — Does AnCan sponsor a colorectal cancer support group? I checked the list of groups on AnCan.org, but missed it if there is one. Thx!

Ancan – rick (to Jim Ward): 4:43 PM: we are working on it, and we have been trying to establish for some time. But not yet ….. WE do have the Speaking Freely group and the Caregivers Group that are pan-cancer. I do know a number of resources for colorectal. We can discuss offline.

Jim Ward (Private): 4:48 PM: Sounds good, Rick. Someone I know has colon cancer (largely under control). She might well benefit from the Speaking Freely group until the colon group gets set up. Thank you! Except Speaking Freely is just for men, I think! Well, will look forward to discussing off-line.

Ancan – rick (to Everyone): 4:57 PM: Speaking Freely https://ancan.org/men-speaking-freely/

Ancan – rick (to Everyone): 4:58 PM: Stereotactic Body Radiation Therapy – SBRT

Mark Perloe (to Everyone): 5:02 PM: Tramadol 100 mg ER might be useful.

Bob McHugh (to Everyone): 5:04 PM: Meloxicam is a prescription NSAID.

Mark Perloe (to Everyone): 5:08 PM: So is tramadol. Do not take on an empty stomach for either.

Ancan – rick): 5:23 PM: Alan Bryce http://www.mayoclinic.org/biographies/bryce-alan-h-m-d/bio-20055430

Ancan – rick:  5:24 PM: Rana McKay https://profiles.ucsd.edu/rana.mckay

Bill Franklin (to Organizer(s) Only): 5:32 PM: I have to drop off guys. Take care and have a good night.

Herb Geller (to Everyone): 5:53 PM: REGN5678 (Anti-PSMAxCD28, a costimulatory bispecific antibody) with cemiplimab

Jim Ward (to Everyone): 6:01 PM: I need to hop off the call now. Have a good night, all!

Len Sierra (to Everyone): 6:01 PM: cemiplumab

Alan Moskowitz (to Everyone): 6:05 PM: Does this group meet everyTuesday at 6 pm? or does it alternate weeks or days?

Mark Perloe (to Everyone): 6:06 PM: I need to check out. Thanks and good wishes and you can all get access to Covid vaccines.

Pat Martin (to Everyone): 6:06 PM: Does anyone know anything about the FLU-BLAST study going on at Fred Hutch?

Herb Geller (to Everyone): 6:06 PM: Mondays at 8 PM EST, Tue at 6 PM EST

Alan Moskowitz (to Everyone): 6:08 PM: Both are for advanced and recurrent?

Ancan – rick (to Everyone): 6:08 PM: Yes Alan ….. both the same

Herb Geller (to Everyone): 6:09 PM: I gotta go tonight. See you all Monday.

John Ivory (to Everyone): 6:09 PM: 1st & 3rd Monday at 8 EST, 2nd & 4th Tue at 6 pm

Alan Moskowitz (to Everyone): 6:09 PM: Thanks John.

John Ivory (to Everyone): 6:11 PM: Orgovyx (relugolix) www.orgovyx.com

An Oncologist Explains Routine Blood Tests

An Oncologist Explains Routine Blood Tests

If you’ve ever come to one of our Virtual Support Groups, you’ve probably heard “be your own best advocate“! It is a favorite mantra of Rick’s, and I’m happy to report it’s rubbed off on me as well. That driving philosophy inspires us to provide information via our groups, webinars, and this blog.

 

We came across a great blog post by our friends at CancerConnect that does just that. C.H. Weaver M.D wrote a phenomenal piece titled “An Oncologist Explains “Routine” Blood Tests Performed in Cancer Patients“. It has everything from CBC (Complete Blood Count) to more specialized tests like PT (Prothrombin time) and Ferritin. I love how simple Dr. Weaver explained things, and provided images too. As a visual learner, it was great to see examples.

 

YOU are a very important part of your care team, and I’m certain this will help empower you even further when you get your lab results back.

 

May all your lab draws be quick, painless, and easily understood!