AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
On November 24th, we were so thrilled to host Nire Nah!
Nire is a singer-songwriter, visual artist, mental health advocate, and human of substance (who happens to also be substance-free). Since 2014, she has been living, learning, creating, and performing in Chicago, Illinois. Her work spans multiple disciplines and mediums, from painting to performance to psychological upkeep. Guided by the principles of rigorous honesty and kind curiosity, Nire aims to invite audiences into a space where they are safe to feel their feelings without restraint. She strives to make people laugh, cry, and think – preferably at the same time.
As a creator in recovery, Nire’s work is tightly intertwined with her own healing and personal growth. Her debut album Coeur Age (2018) is a rollercoaster of story-songs, anthems, tantrums, lullabies, and laments, mapping the wilderness of active addiction and mental illness from the inside out. Her latest release Everything Stands Back Up (2020) balances the scales with a series of earnest reflections on the grueling but grounding work of long-term emotion regulation and mental maintenance. In these songs, Nire explores the nonlinearity of recovery and emphasizes the important connections between individual and communal healing.
Nire shared songs and an animated video from her latest album, Everything Stands Back Up.
Watch the show here:
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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.
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
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/
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.
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.
