Joe Boardman comes to terms with life

Joe Boardman comes to terms with life

If you have attended our Advanced Prostate Cancer Group, or our Speaking Freely Group or even our U60 Advanced PCa group, you may have been fortunate enough to hear Joe Boardman particpate from his erie in Colorado.

Joe is another remarkable athlete, like Kenny Capps who we justed blooged about. He has climbed many of the highest peaks with his wife, Karen and son, Eli …. we blogged about him a while back and you can read that here https://ancan.org/yet-another-amazing-athletic-achievements-with-zero-testosterone/

Now the University of Coloradoa has made this short film about The Boardmans on their family ranch in Wyoming ….. it’s a tear jerker!

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Aug 11, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Aug 11, 2020

Editor’s Choice: So much tonight inc 30 gents!!! My choice – maybe the new Dx G4+5 with a suspicious image on L5; or, ECE with just 5mm of G3+4???   (rd)

Topics discussed

New Dx G4+5 with a suspicious mass; MRI shows ECE with tiny amount of G3+4; treating oligoMX the Kwon way; incontinence – do your Kegels!!; Procrit may finally help low blood counts; do stains mask your PSA?; addressing hot flashes; continued success on abi; penile Mx still a puzzle

Chat Log

John Ivory (to Everyone): 3:24 PM: Jim, I found this 5 min. video by the head of the Prostate Cancer Research Inst. (PCRI) in thinking about surgery vs. radiation https://bit.ly/3fSQQ37

Carl Forman (Private): 3:26 PM: just to let Jim know about the patient guide from PCF.org

Jeremy (Organizers): 3:47 PM: Rick, just got back from my second opinion at UCI w Dr. Edward Uchio. They agree that the MRI report is not consistent with the biopsy findings. My UA showed I have a bladder infection. So I’m holding off on surgery and going to undergoe genomic testing and antoehr MRI. Thank god I found you guys.

Geoff (to Everyone): 3:53 PM: Don’t start Lupron before PSMA scan

Jake (to Everyone): 3:54 PM: PSMA – prostate specific membrane antigen

Jake (to Everyone): 3:56 PM: Axumin PET scan

Herbert Geller (to Everyone): 3:58 PM: There is no PSMA PET in Pitt. But there is an ongoing trial at CWRUhttps://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2018-00468&r=1

AnCan – Rick (to Everyone): 4:34 PM: https://www.urotoday.com/video-lectures/prostate-cancer-foundation-2019/video/1593-the-impact-of-vitamin-d-and-statins-on-prostate-cancer-outcomes-lorelei-mucci-and-elizabethplatz.html

The Talk – Ovarian Cancer … Speaking to Your Family About Your Disease

TO WATCH THIS WEBINAR, PLEASE CLICK HERE.

FOR MORE INFORMATION ON OUR VIDEO CHAT PEER LED OVARIAN CANCER VIRTUAL SUPPORT GROUP, CLICK HERE. 

TO REGISTER FOR OUR OVARIAN CANCER VIRTUAL SUPPORT GROUP OR ANY OTHER ANCAN GROUP, GO TO https://ancan.org/contact-us/

                            

Do you have biologic kids?  Are you living with a chronic and serious condition that could impact your children?  Have you ever spoken to them about this?

If you answered YES, to the first two questions, and NO to the last, this series of talks could be for you! With various partners, AnCan will approach different diseases to consider the issues around  an important ocnversation that is rarely discussed.

  • Should you share your disease with your kids – and if so, when?
  • Can it impact their  lives directly?
  • What steps shoud they take?

In this first series AnCn will address:

  • Prostate Cancer with UsTOO on June 30 @ 8 pm Eastern, moderated by Dr. Alica Morgans (Northwestern). Panel will include Dr. Ryan Bergland (Cleveland Clinic) and 4 pairs of fathers and sons/daughters.
  • Ovarian Cancer with NOCC on July 29 @ 8pm Eastern moderated by Dr. Pamela Muenster (UCSF BRCA Center). Panel will include mothers and sons/daughters and a medical professional TBD
  • Multiple Sclerosis with A Couple Takes on MS on Sept 30 @ 8 pm Eastern. We will be flipping the tables to include how kids speak to their prents when diagnosed with MS.

 

The Talk – Ovarian Cancer

Moderator: Dr. Pamela Munster, Co-Leader, UCSF Center for BRCA Research

Co-Sponsors

Viral ….. Dr. B.J. Millers thoughts on our current world-wide crisis!

Viral ….. Dr. B.J. Millers thoughts on our current world-wide crisis!

Some of you already know one of the most remarkable members of our Advisory Board, palliative care doc,  B.J.Miller. If you don’t, then listen to his TED Talk along with 10.5 million others!!! We are all getting ample Covid19 e-mail …. but if you got a missive directly from Bill Gates, I bet you’d read it. 

Well today I received an e-mail from my buddy, B.J.s institute, The Center for Living and Dying. It contained his thoughts on the surreal crisis we all find ourselves in  – and for me it truly struck a chord. To put it in my Marxian (Brothers) terms … are you a man or a mouse??? Read B.J”s thoughts and reflect – btw, it was mailed off-center .. and personally I think that is just perfect!!

And in case you didn’t get my allegory, Bj’s thoughts fall into the same category as Bill Gates – at least for me! (rd)

 

dear folks,

here we are, struggling and about to struggle more. i hesitate to add to the pile of missives flying around the ether, but i do want to shout hello and maybe sound a subtler note with a few reminders. 

remember that, if we are in-tune and honest with ourselves, every one of us already knows vulnerability.  we may have hidden it away or covered it over with self-assuredness or fortune, etcetera, but underneath our colorful coats has always been a sensitive, naked, tender, affectable critter. anyone who’s been ill or injured or disabled, loves someone who has, or is simply a sensitive soul, knows this feeling well where nothing may be taken for granted.  the ground beneath us has never been as solid as we like to think it is.  in other words, on some base level, we are not in wholly foreign terrain.but this time, our covers are being pulled collectively and simultaneously.  that may be terrifying, and it’s also cause for hope.  us versus them doesn’t make sense anymore, if it ever did.  now, finally, we get to share the big common reality out in the open. we may be removed from one another, but we have never been less alone.

our humanity is being summoned, which means we will be seeing our real power. it’s soft and immense and adaptive and willing to get messy.  we will also see ugliness and selfishness, in ourselves and others, but I bet the farm our gnarls will be overwhelmed by our beauty.  though the cost will be hard to bear, we are about to learn so much.  it’s a matter of survival now, not in the abstract, and that’s when we humans get serious and come together.

we are all being reacquainted with life’s basics and the awesome power of nature, including human nature.  this goes for ourselves as well as for the systems we’ve invented – healthcare, government, economic.  all are being tested now, and so all have a shot at evolving.

it’s also worth reminding each other that “social distancing” – usually a problem and now the solution – only pertains to physical isolation.  we can still love each other.  we must.  we can still communicate over the airwaves.  we can still mean well by each other.  however you do it, keep ‘touch’ alive.  losing touch can result in losing empathy, and that would be one sure way to make a bad situation worse. instead, let the longing build; it will help stave off loneliness and nihilism, and it will keep us feeling.  those of us who have experienced compassion, whether coming from us or towards us, know that it’s always there.  it just needs to be called-up and exercised.  it needs an excuse to show itself, and suffering provides that excuse. one day, we’ll be able to directly share all that affection again, and you can bet it will be with heightened appreciation and passion.

from years of working with people who are dealing with the unimaginables of life, i can safely state that people are stronger than they tend to realize. we are. maybe it’s more accurate to say we are differently strong from the conventional, muscle-bound notions of strength. this bigger and suppler sleepy inner strength just needs a reason to flex. and here we are.

in love and grief and solidarity, XOb

 

 

 

 

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Aug 11, 2020

High Risk/Recurrent/Advanced Prostate Cancer Virtual Group recording – 02/17/20

 

Topics discussed

Editor’s choice: Learn first hand about certain side effects from the immunotherapy drug, nivolumab (Opdivo). 

Pharmokinetics of Lupron – explained a little; side effects of immunotherapy anti-PD1 drug Opdivo; treating liver metastasis; getting palliative doc involved; durolutamide results; starting ADT froom scratch; monitoring G5+5 PCa after you come off LHRH; what to know when starting chemo; neuropathy and maybe how to prevent it from chemo

Chat Log

Russ Smith (to Everyone): 7:20 PM: Turns out I was given a script today for Casodex.

Ken Anderson (to Everyone): 7:22 PM: Russ

Ken Anderson (to Everyone): 7:22 PM: good to know!

AnCan Barniskis Room (to Everyone): 7:22 PM: Great Russ – false alarm

Russ Smith (to Everyone): 7:24 PM: Thats why I bring my wife to these meetings. She is my scribe.

Ken Anderson (Private): 7:27 PM: Great Non-profits requires you to log in and set up an account prior to posting.

AnCan Barniskis Room (to Everyone): 7:31 PM: Great Non-profits requires you to log in and set up an account prior to posting.

Russ Smith (to Everyone): 7:35 PM: Gotta run guys. Thanks for the advice. Be back soon.

richard wassersug (to Everyone): 7:36 PM: I have to leave now. My thanks to all of you for letting me join the group this evening.  Bye.