Special Presentation: Exercise After Prostate Cancer: Active Surveillance and Beyond

Special Presentation: Exercise After Prostate Cancer: Active Surveillance and Beyond

On December 1st, we had Dr. Kerry Courneya (Professor, Faculty of Kinesiology, Sport, and Recreation at University of Alberta) give a talk to our AS group titled “Exercise After Prostate Cancer: Active Surveillance and Beyond

Dr. Courneya had one message: Don’t take your cancer laying down.

He maintained that research has shown “exercise is the single most important thing” a cancer patient can do—even more important than diet.

His research has shown patients with prostate cancer (low-risk to high-risk), lymphatic cancer, and other cancers benefit from exercise.

The most recent study by his group in Edmonton, appearing in JAMA Oncology, showed for the first time that High Impact Intensity Training–bursts of exercise rather than a continuous approach—can help suppress the growth of prostate cancer cells in men on active surveillance. (https://jamanetwork.com/journals/jamaoncology/fullarticle/2783273)

The ERASE study was the first randomized controlled trial to examine the effects of exercise in men with prostate cancer on AS.

There’s more to the exercise story than suppressing prostate cancer. The biggest risk to men with low-risk prostate cancer is heart disease. The study showed that not only does exercise suppress prostate cancer cells but it also helps with cardiac measures.

He said also exercise relieves anxiety and depression, helping men stay on AS longer.

“Exercise is a win-win.” he said.

Short exercise videos can also be found on Pfizer’s site “This Is Living With Cancer” .

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.

 

Webinar: Multiple Sclerosis and Urological Issues

Webinar: Multiple Sclerosis and Urological Issues

On November 29th, we hosted rockstar Urologist and Sexual Medicine Specialist Dr. Rachel Rubin!

Many folks living with MS rarely get the opportunity to discuss urologic issues – whether related to incontinence or sexual function. But if you attend our virtual chat support groups, you’ll know the topic comes up often.

That’s why we brought Dr. Rubin to speak openly and frank about it. No stigma, no judgment! Kim asked your questions, and got some great answers.

With all the phenomenal feedback we have received, we are in hopes to host Dr. Rubin again soon. Stay tuned!

Watch this amazing webinar here:

 

Special thanks to Myovant Sciences – Pfizer and Foundation Medicine for sponsoring this webinar.

 

Thank you also to MS4MS and Jennifer and Dan Digmann.

To view the slides from this webinar, click here.

For information on our peer-led video chat VIRTUAL SUPPORT GROUPS, click here.

To SIGN UP for any of our for Multiple Sclerosis Virtual Support groups, visit our Contact Us page.

Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 23, 2021

Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 23, 2021

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/

To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/

Editor’s Pick: AnCan is honored with the first time presence of a PCa doyen this week. Even he is overshadowed by conversation between two men with 60+ chemo treatments between them! (rd)

Topics Discussed

Snuffy lives through this PCa elder; testosterone supplementation; keep an eye on bone densitty; lo-fat abiraterone protocol; cryo alternative for spot Tx of lesion; GERD effects seveal of our guys; cabaziatxel + carboplatin protocol for small cell/NE disease; CEA as a marker; TP53 + PTEN cast suspicion on PCa type; diet may slow growth; is AUS causing fevers?; comparing notes on mutliple chemotherapies; drug holidays; lesions disappear with treatment …. but another shows up.

Chat Log

Larry Fish (to Everyone): 4:15 PM: lupron before casodex?

Joe Gallo (to Organizer(s) Only): 4:16 PM: PSMA?

Larry Fish (to Everyone): 4:18 PM: did they try stopping casosex?

Herb Geller (to Organizer(s) Only): 4:19 PM: Bless him! Getting tooth implants at 89!

Jake (to Organizer(s) Only): 4:20 PM: Is that BAT?

Len Sierra (to Organizer(s) Only): 4:20 PM: No, Andro-gel.

Herb Geller (to Organizer(s) Only): 4:20 PM: Its a modified BAT but it depends upon the dose of andro-gel

Jake (to Organizer(s) Only): 4:21 PM: thanks

AnCan – rick (to Organizer(s) Only): 4:24 PM: Not really BAT -BAT uses extremes and swamps AR receptors. This is a crazy Snuffy protocol

Pat Martin (to Everyone): 4:25 PM: Any genetic testing?

AnCan – rick (to Everyone): 4:26 PM: This Testosterone Tx is highly controversial!!

Jimmy Greenfield (Private): 4:27 PM: Snuffy Myers has left quite a footprint! I almost feel like I know him.

AnCan – rick (to Jimmy Greenfield): 4:28 PM: Some crazy ideas and some that proved viable

Dennis Correia (to Everyone): 4:51 PM: Journal of Clinical oncology March 28, 2018 for info the Abi low dose with low fat breakfast.

Len Sierra (to Everyone): 4:51 PM: From Dr. Russell Szmulewitz, (U Chicago) director of the clinical trial showing equivalent effectiveness of Zytiga with food at ¼ the dose with a low fat meal. Abiraterone, approved in 2011 for the treatment of metastatic prostate cancer, has a “food effect” that is greater than any other marketed drug. The amount of abiraterone that gets absorbed and enters the blood stream can be multiplied four or five times if the drug is swallowed with a low-fat meal (7 percent fat, about 300 calories). That can increase to 10 times with a high-fat meal (57 percent fat, 825 calories).

Pat Martin (to Everyone): 4:52 PM: I was under the impression that the docs did not think the patients would follow precise instructions.

Jake (to Organizer(s) Only): 4:56 PM: omeprazole (Zantac?) might be the answer

Joe Gallo (to Organizer(s) Only): 4:57 PM: Prilosec

Jake (to Organizer(s) Only): 4:58 PM: right! thanks Joe.

Herb Geller (to Organizer(s) Only): 5:03 PM: I just read an article that CEA with PC is a very bad prognostic factor

Len Sierra (to Organizer(s) Only): 5:04 PM: I agree, Herb.

Herb Geller (to Organizer(s) Only): 5:05 PM: Although another paper says there is no correlation with OS. So no real data.

Herb Geller (to Everyone): 5:14 PM: Initial Management of Noncastrate Advanced, Recurrent, or Metastatic Prostate Cancer: ASCO Guideline Update Abiraterone 250 mg daily with a low-fat breakfast has been examined as an alternative to abiraterone 1,000 mg on an empty stomach for men with metastatic castration-resistant prostate cancer (CRPC) and was shown in a small phase II trial to be noninferior based on the PSA response rate over 12 weeks…….. read more at https://ascopubs.org/doi/pdf/10.1200/JCO.20.03256

Walter Dardenne (to Everyone): 5:51 PM: I have to leave, Happy Thanksgiving to everyone.

AnCan – rick (to Everyone): 5:51 PM: Same to you Walt – tx for coming

AnCan – rick (to Everyone): 5:52 PM: where else can you hear two guys speak with so much chemo under their belt!?!

Joel Blanchette, Reston VA (Private): 5:54 PM: OK

Stephen Saft (to Everyone): 5:55 PM: I have a friend who has PSA in the 1500-2500 range. He has had few symptoms of the disease and no metastatic disease.

Pat Martin (to Everyone): 5:57 PM: Ya’all have a great Thanksgiving. Gonna run. See you next week

AnCan – rick (to Jim Ward): 6:08 PM: I’m telling Alexa that your pussy cat showed up on the call

Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 23, 2021

Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 15, 2021

Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 15, 2021

Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 23, 2021

Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 9, 2021

Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 9, 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: The importance of having a GU Med Onc (genitourinary medical oncologist) comes up more than once. And keep good records!(rd)

Topics Discussed

If chemo didn’t do the trick….; uncertain if trial is effective; draft a GU med onc – quickly!; 3 yrs off HT and treatment holding; in the midst of Provenge; the importance of good record keeping; PSAMA baseline scan; the PROMISE germline trial

Chat Log

Edward Clautice (to Everyone): 4:15 PM: 3/29/201 PSA 8.9 5/6/201 Biopsy 8 cores Gleasons range from 3+3 to 4+5.  Average Gleason 7.5. Also has perineural invasion

6/29/2015 Urologist removers prostate and some associated nerve (the one which controls erections) are removed at surgery; Inova Hospital Fairfax VA Lymph nodes biopsied. 0/3 with cancer Seminal vesicles are involved Prostate. Gleason 4+5 Positive margins seen. Tumor volume 70%

7/30/2015 – 10/?/2015

Begin radiation treatments of the prostate bed Receive a whole bunch of radiation. Doc says, never again get radiation there.

10/16/2015 PSA 0.4

1/28/16 Switched to Dr J Aragon-Ching, Oncologist PSA –  <0.1 Also receive Lupron Testosterone 6 ng/L

5/15/2018 Continue with DR Aragon-Ching getting Lupron and generally getting <0.1 on PSA

5/15/2018

Move from Fairfax to central Kentucky Sign up with Dr. Monte Metcalf. Regular oncologisy at regular hospital

8/?/2018 PSA begins to rise. Not sure how high. Begin Casodex. PSA drops

12/?/2019 PSA now rising again Switched over to Abiraterone. Dr Metcalfe seems not as concerned as I am . Abiraterone works for maybe 6 months

6/?/2020 PSA begins to rise again I decide to switch over to that giant teaching hospital (U of Kentucky) I keep driving past. Also  I now have much better medical insurance so I actually can switch over.

11/2/2020 PET scans, CT scans, every other kind of scan Lots of bone tumors, not a lot of soft tissue tumors (there were some reasons for this next delay, and honestly I forget exactly what they were) A couple times Dr PW takes my scans to the weekly med school oncology faculty meeting. “Tumor of the week club.”

2/?/2021 Bone biopsy. Shows tumors to be metastatic. PSA running about 7; which Dr PW says is really low compared to the tumor mass I have. Dr PW has senior UK pathologist personally check biopsies to make sure it is prostate cancer and not “small cell.” Senior pathologist confirms this is true.

4/15/2021 +/- Stop abiraterone Begin Docetaxel every 3 weeks, for 10 treatments Zoledonic acid (?for bones) every 6 weeks and keep getting anti-hormone shot, elegard , every 12 weeks Also prednisone PSA 7.11 I am allergic to docetaxel and it tries to stop me from breathing. Docs give me stuff so this does not happen any more. Minimal side effects that stop me from wanting to get more treatments of docetaxel

8/12/21 PSA 4.88

11/3/2021 Docs just posted results of yesterday’s CT scans and nuclear medicine scans PSA 3.7 Scans show no soft tissue tumors Scans show lots of widespread bone tumors. “Impression: Widespread bone metastases.” “New subtle foci of….” 4 or 5 places “Bones/joints: Focal mildly intense increased uptake involving……” a four line list of different bones. “Compared to previous: Progressive bone metastases.

11/4/2021 Get last docetaxel Talk with Dr PW about what comes next

Note: Up to this time I have zero symptoms of pain from tumors or anything else in my bones. I exercise and lift weights regularly.

Vic (to Organizer(s) Only): 4:32 PM: Is sequencing of tumor the way to determine if the cancer as advanced from MSPC to MRPC?

Vic (to Organizer(s) Only): 4:34 PM: Are any LU-177 trails open to MSPC?

Len Sierra (to Everyone): 4:42 PM: Vic, no, sequencing is done to see if there are mutations for which there are therapies that target that mutation.

AnCan – rick (to Vic): 4:44 PM: Vic ….. PSA rising is the sign of hormone resistance.   The only trial available to HSPC requires no prior hormone therapy

Jake (to Organizer(s) Only): 5:07 PM: No, I checked. It actually recorded 49 seconds including my apologies and the discussion about logging off and back on. Weird! You made the right decision since it is too undependable …

Vic (to Organizer(s) Only): 5:14 PM: what is bi-polar androgen therapy? Eligard plus Abiraterone?

Joe (to Everyone): 5:18 PM: gotta run gents, great to see y’all again

Rusty (Private): 5:23 PM: BBL have another meeting going on.

Len Sierra (to Everyone): 5:23 PM: Carlos, this comes from the Provenge Treatment Guide:              How to Prepare:

  • Stay hydrated by drinking more water in the days leading up to your

appointment

  • Avoid caffeinated beverages on the day of your appointment
  • Eat calcium-rich foods such as dairy products, dark leafy greens, or

supplements

  • Eat a hearty meal within four hours of your appointment
  • Wear loose-fitting clothes, with sleeves that can be raised above the elbow
  • Bring a current photo ID
  • Consider arranging transportation to and from the procedure

eric  (to Everyone): 5:24 PM: ok thanks you.

eric  (to Everyone): 5:27 PM: hey rick in order to particoate in the trail you sent me. Are you saying if I was still on the Orgovyx. I would be eligible for the Netashim trial?

AnCan – rick (to eric ): 5:27 PM: If me I would consider getting back on an LHRH drug like orgovyx ASAP. If not orgovyx or firmnagon, then be sure they give you at least 15 days of bicalutamide first. Some docs forget! you don’t nbeed with Orgo or Firma. Put pressure on them to give youa  quick appt. You don’t need Song now you need a GU (genitourinary) medical oncologist

Herb Geller (to Everyone): 5:29 PM: Actually, one other person at Hopkins is Catherine Handy Marshall.  She is an Antanorakis understudy and I think Carl saw her.

AnCan – rick (to eric ): 5:29 PM: Eric – if you were still on Orgovyx AND your PSA was rising you would be eligible.

Carl Forman (to Everyone): 5:29 PM: Yes I did see her; impressive.

AnCan – rick (to eric ): 5:31 PM: So here’s another name above. Catherine Handy Marshall

Pat Martin (to Everyone): 5:33 PM: See ya all next Monday.

Herb Geller (to Everyone): 5:37 PM: https://www.hopkinsmedicine.org/profiles/details/catherine-handy

Frank Fabish (to Everyone): 5:39 PM: Got to go guys. Thanks

AnCan – rick (to Everyone): 5:47 PM: https://www.fiercehealthcare.com/tech/invitae-scoops-up-consumer-health-tech-firm-ciitizen-for-325m  Bought by Invitae

AnCan – rick (to Vic): 5:50 PM: Vic …. are you any realtion to Lauren Paglisotti? We spoke to her at Michael J Fox

Len Sierra (to Everyone): 5:52 PM: That’s the goal of most startups — get bought out by a larger compary and cash in!

Vic (to Everyone): 5:57 PM: Thanks all!

Carlos Huerta (to Everyone): 6:00 PM: Good night all

AnCan – rick (to Everyone): 6:08 PM: Gotta run over to te RMCmeeting.G’night Gents

Special Presentation: Exercise After Prostate Cancer: Active Surveillance and Beyond

Special Presentation: Walking Around With Cancer: The Psychological Burden of Active Surveillance

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 23, 2021

Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 1, 2021

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/.

To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/.

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?

Jake (to Organizer(s) Only): 5:29 PM: 4 + 5 PSA 45

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)

AnCan – rick (to Everyone): 5:41 PM: https://www.clinicaltrials.gov/ct2/show/NCT04720157?term=PSMAddition&draw=2&rank=1

Henry (and Staci) Cornelius (to Everyone): 5:45 PM: Thanks everyone for all the time spent.

Herb Geller (to Everyone): 5:45 PM: The contact for the Lu trial in Jacksonsville is Jacob.Andring@CSNF.us

George (to Everyone): 5:49 PM: Genito Urinary Medical Oncologist

Herb Geller (to Everyone): 5:49 PM: He is not a GU oncologist. Vivek Arora at Siteman seems competent.

larry meddles (to Everyone): 5:54 PM: last week someone suggested that I get a PYL pet scan, what does PYL mean?

Jake (to Everyone): 5:55 PM: Pylarify

George (to Everyone): 5:55 PM: https://www.pylarify.com

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.

Len Sierra (to Everyone): 6:07 PM: Treating the primary in metastatic PCa https://journals.lww.com/co-supportiveandpalliativecare/Abstract/2019/09000/Treating_the_primary_in_metastatic_prostate.16.aspx

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

ken (to Everyone): 6:15 PM: got to sign off guys…

AnCan – rick (to Everyone): 6:30 PM: Cachexia Conference tomorrow https://www.cancersupportcommunity.org/cachexia-pfdd

George (to Everyone): 6:38 PM: https://www.urotoday.com/video-lectures/esmo-2021/video/2320-stampede-analysis-of-abiraterone-with-or-without-enzalutamide-added-to-androgen-deprivation-therapy-compared-to-adt-alone-in-high-risk-non-metastatic-prostate-cancer-patients-gerhardt-attard.html

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

Jeff Marchi (to Everyone): 7:07 PM: https://radiomd.com/show/her/item/45742-men-get-hot-flashes-too

David Muslin (to Everyone): 7:10 PM: Gotto go men, see you next week

Frank Fabish (to Everyone): 7:11 PM: Gotta go. good night all. Thanks for insight.

Joe Gallo (to Everyone): 7:12 PM: embrlabs.com

AnCan – rick (to Everyone): 7:12 PM: https://myrcc.redcapcloud.com/?#join=352a5988a6ee4219888676c627c3bd2f   That’s the trial – EMBR Wave

Herb Geller (to Everyone): 7:13 PM: Andrew Vetter (vetter@embrlabs.com) is the person to contact for the trial.

Henry (and Staci) Cornelius (to Everyone): 7:14 PM: Steve, I’ve been taking pantoprazole for GERD for 3 months and it’s been great.

Jim Stevens (to Everyone): 7:18 PM: I need to leave. Thanks for the conversation. I will be back.

Len Sierra (to Organizer(s) Only): 7:19 PM: I’ve got to drop off, guys. See y’all next week.

Jake (to Everyone): 7:19 PM: LHRH/GNRH still suppress testosterone even if ‘castrate resistant’.

Herb Geller (to Everyone): 7:25 PM: I think our friends now live in Elkins Park.

Pat Martin (to Everyone): 7:26 PM: I like drinking V8, the spicey variety.

Julian Morales-Houston (to Everyone): 7:28 PM: Have to call it a night – Very good conversation as always! thanks.

Henry (and Staci) Cornelius (to Everyone): 7:32 PM: thanks y’all!

Solo Arts Heal with Elliott Kerman

Solo Arts Heal with Elliott Kerman

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) collaborate every 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, Nov 23, 2021

Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 26, 2021

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!

Jake Hannam (to Everyone): 3:11 PM:Len Sierra article  https://ancan.us14.list-manage.com/track/click?u=ece3f3da90f82cb974b407396&id=86fad2dc1a&e=6727193137

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.

‘BEING’ YOUR OWN BEST ADVOCATE

‘BEING’ YOUR OWN BEST ADVOCATE

‘BEING’ YOUR OWN BEST ADVOCATE
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.