Hi-Risk/Recurrent/Advanced PCa Video Chat, June 14, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, June 14, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, June 14, 2022

 

Register for our upcoming webinar on June 29 on Genetics & Genomics at https://bit.ly/3QiNvxS

If you’re a Vet, AnCan will be launching a new Vets Group to help navigate medical care. First meeting Thu, June 23, at 8.00 pm Eastern in https://www.gotomeet.me/AnswerCancer. Free and drop-in as always!

All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/

Editor’s Pick: Long term survival with metastatic PCa is this week’s recurring theme (rd)

Topics Discussed

Newbie joins us with Lynch Syndrome; anti-PD1 immuno side effects, MSI – and the swab test for sensitivity; darolutamide monotherapy; brain fog from HT; lung nodules ID’d as PCa; stable, long-trm survivor; supporting non-particpants; care partners extend survival; when’s the right time for Pluvicto?; BIG Pluvicto success

Chat Log

AnCan – rick (to Everyone): 3:09 PM: Peter – I spoke with Alexa today about saving the chat. Evidently it depends on how you join. She will provide an explanation and directions in all our future emails.

Jeff Marchi, San Francisco (to Everyone): 3:37 PM: free genetic test if you have prostate cancer. https://www.prostatecancerpromise.org

George Rovder Arlington VA (to Everyone): 3:41 PM: Thank you Jeff Marchi. I appreciate it and will check it out. George

Len Sierra (to Everyone): 3:49 PM: https://miradx.com/imudx-testing/ The Keytruda test: IMUDX swab test ImuDx Testing Populations Patients with any type of cancer who are being considered for anti-PD1 or anti-PDL1 therapy are eligible for testing. This test predicts the risk of developing immune related adverse events in response to anti-PD1 or anti-PDL1 treatment.

Herb Geller (to Everyone): 3:50 PM: Cardiac toxicity from checkpoing therapy can range from asymptomatic troponin-I elevations to conduction abnormalities of the heart and even fulminant myocarditis. Although rare, myocarditis is a potentially fatal adverse effect of ICI therapy.

George Rovder Arlington VA (to Everyone): 3:54 PM: Thank you all, friends, for the wisdom and kindness. I have to leave early this evening. I will watch the video to see and hear the rest of the discussion. George

AnCan – rick (to Everyone): 3:55 PM: Bill’s Genetics 101 Primer https://ancan.org/cancer-genetics-101-a-very-basic-primer/

Julian Morales – Houston (to Everyone): 3:58 PM: Have to leave, have a conflicting meeting at 6pm.

Ben Nathanson (to Everyone): 4:00 PM: @Richard – ODENZA: A French prospective, randomized, open-label, multicenter, cross-over phase II trial of preference between darolutamide and enzalutamide in men with asymptomatic or mildly symptomatic metastatic castrate-resistant prostate cancer (CRPC) https://meetings.asco.org/abstracts-presentations/201628

Pat Martin (to Everyone): 4:00 PM: Thanks for the info and the links

George A Southiere Jr (to Everyone): 4:04 PM: very correct that most of us have been on multiple treatments that cause”brain fog”would be very difficult to discern. Be very skeptical of Pharmaceutical studies

John Antonucci (to Everyone): 4:08 PM: I just tried to find any paper on monotherapy androgen blockers and came up with zilch

Thomas Jacobsen – CO (to Everyone): 4:43 PM: Have to leave. Thank you everyone.

Russ Strehlow (to Everyone): 4:46 PM: I have to leave also. Thank you

George A Southiere Jr (to Everyone): 4:50 PM: Great meeting everyone, gotta go. Be well all

Richard Wassersug (to Everyone): 5:00 PM: Thank you all. Have to go.

Herb Geller (to Everyone): 5:00 PM: I gotta go as well. See you all next week.

David Muslin (to Everyone): 5:01 PM: Great meeting as always. See you men next Monday night.

There is Help

At AnCan, we recognize that many are in crisis right now.

We want you to know that we stand with you, that you are not alone, and there is help.

View the phone numbers below, or visit suicide.org for more resources and hotlines, including other countries, veterans, LGBTQ+, teens, texting, and in multiple languages.

 

 

Love,

ALL of us from AnCan.

💜  💚  💜  💚 💜  💚  💜  💚

 

 

Hi-Risk/Recurrent/Advanced PCa Video Chat, June 14, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, June 6, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, June 6, 2022

 

If you missed our two events last week, here are the links:.. Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer with Drs. Stacy Loeb (NYU) and Justin Gregg https://ancan.org/webinar-optimizing-sleep-exercise-and-nutrition-in-prostate-cancer/

It Ain’t Your Grandpa’s BPH with Dr. Steve Kaplan (Mt. Sinai, NYC) https://ancan.org/special-presentation-it-aint-your-grandpas-bph/

AND – if you’re a Vet, watch this space. AnCan will be launching a new Vets Group to help navigate medical care. It is not exlclusively prostate cancer, so tell Vet friends. 4th Thursday starting June. If you want to sign up please write Group Leader Joe Gallo joeg@ancan.org.

All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/

Editor’s Pick: Prostate Cancer can occur in the testes!! And plenty of Provenge(rd)

Topics Discussed – long session this week with 2 newbies and 12 folks needing time!

Recurrent PCa does not respond to intermittent cycles; confined recurrence of focally treated high risk PCa; keeping the cancer offguard; Provenge – 2nd time today and not the last; IHT starting; Dr. E prescribes Pluvicto; Trimix experience; darolutamide beter than enz; remembering Hawaian Bob Smith; peritoneal implants (lesions) return; testicualr PCa lesion; UCLA refunds PSMA cost; lo-dose abi with food; pros & cons of self-cathetering; when to move on from chemo; morning fatigue and adjusting darolutamide dose; Provenge tips – again/finally!

Chat Log – made up for with a slow Chat … phew!

Len Sierra (to Everyone): 6:07 PM: SSPORT study: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)01790-6/fulltext#section-3d6acba1-acea-4be2-8dc9-b7e14e5b6583

Stephen Saft (to Everyone): 6:34 PM: I am going to say goodnight. Thanks

Joe Gallo (to Everyone): 6:43 PM: Vets interested can send me an email or drop in. Joeg@ancan.org

John Birch (to Everyone): 6:58 PM: Need to sign off, appreciate the discusssions tonight.

Frank Fabish – Ohio (to Everyone): 7:04 PM: thanks guys allowing me to give an update. Can’t make it next Tuesday.

Pat Martin (to Everyone): 7:07 PM: I’ll catch you next Tuesday. Good meeting

Mike Yancey (to Everyone): 7:15 PM: Got an early morning, so need to drop before we complete tonite. Lots of good discussion.

Julian Morales – Houston (to Everyone): 7:26 PM: need to drop off – another great meeting, Glad to be able to relate my experience to this community. All the best to everyone!

AnCan Barniskis Room (to Everyone): 7:30 PM: jerry.deans@comcast.net

Alan Moskowitz (to Everyone): 7:31 PM: all for now, goodnight all.

Len Sierra (to Organizer(s) Only): 7:43 PM: Good job, Rick! Busy night.

Don Kramer (Private): 7:44 PM: Good Job Rick.

George Rovder Arlington VA (to Everyone): 7:44 PM: Thank you all.

Don Kramer (Private): 7:44 PM: sorry to hear about jerry deans

Special Presentation: It Ain’t Your Grandpa’s BPH

Special Presentation: It Ain’t Your Grandpa’s BPH

On June 1st, we had the pleasure of world renowned Dr. Steven Kaplan speaking to our Active Surveillance Prostate Cancer virtual support group, in collaboration with ASPI, titled “It Ain’t Your Grandpa’s BPH – An ‘Urgent’ Issue“.

Dr. Kaplan is Director of the Men’s Wellness Program, Mount Sinai Health System and Professor, Icahn School of Medicine at Mount Sinai. He is an internationally renowned authority and one of the primary thought leaders in the study of benign diseases, the association of metabolic factors with voiding dysfunction, and female urology, with symptoms related to both benign prostate enlargement and bladder function.

Dr. Kaplan is a Diplomat of the American Board of Urology and a Fellow of the American College of Surgeons. He is an internationally recognized authority and one of the primary thought leaders in the study of benign diseases of the prostate, the association of metabolic factors and voiding dysfunction and female urology. He has over 1000 publications including 600 peer reviewed and 570 peer reviewed invited articles, and 90 book chapters and non – peered reviewed articles.  His landmark study, published in JAMA in 2006, changed the way medications are used in the treatment of men with symptoms related to both benign prostate enlargement and bladder dysfunction.

You’ll hear about the latest advancements in BPH, how diet and sleep can impact your prostate (and overall) health, and more.

Watch here:

 

Special thanks to Pfizer and Bayer for sponsoring this presentation

We apologize for the inconvenience, but slides for this presentation are not available. 

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

To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.

Special Presentation: It Ain’t Your Grandpa’s BPH

Webinar: Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer

On May 31st, we hosted a webinar full of great information for not just prostate cancer patients, but for all! Titled “Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer“, we learned best practices for the foods we eat, to how sleep apnea can impact our whole health.

 

The program features Dr. Stacy Loeb, professor of Urology and Population Health at the New York University School of Medicine and the Manhattan Veterans Affairs Medical Center, and Dr. Justin Gregg, Assistant Professor of Urology and Health Disparities Research at UT MD Anderson Cancer Center, of UT MD Anderson Cancer Center in Houston. Dr. Gregg discusses his research on diet. Dr. Loeb discusses her research on a plant-based diet, sleep, and exercise.

 

Watch here:

 

Editor’s Note: Dr. Stacy Loeb and colleagues at NYU Langone Health are doing a research study about sleep and lifestyle for men with prostate cancer and their partners and/or family members.
Participation involves visiting a website designed by the study team with recommendations about sleep, nutrition and exercise, completing online surveys, wearing a wrist watch to measure activity for a total of two weeks, visiting a website, and two telephone calls with the study team. Gift cards will be provided as reimbursement for study completion.

See the attached for more information or contact the study coordinators to schedule an interview:
Nataliya Byrne: 646-501-2681 / Nataliya.Byrne@nyulangone.org
Tatiana Sanchez Nolasco: 646-501-2550 / Tatiana.Sancheznolasco@nyulangone.org

 

Special thanks to Pfizer,  Bayer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.

 

To view the slides from this webinar, click here for Dr. Loeb’s, and here for Dr. Gregg’s.

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

To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.

Summer of Art – New Art Classes!

Summer of Art – New Art Classes!

Summer of Art – New Art Classes!

summer of art sunflowersHello, Friends and Family of AnCan.

If you’re in need of a little pick-me-up, or perhaps some much needed time making art as “therapy” with other people in our amazing AnCan community, we’ve got something for you.

AnCan’s Summer of Art 

AnCan Foundation has been awarded a grant from HealtheVoices Impact Fund at the Community Foundation of New Jersey funded by Janssen Pharmaceuticals, Inc. to provide art “therapy” to brighten all our lives! We’re calling this art “therapy” series the Summer of Art!!

Award-wining arts-in-healthcare teacher, Hannah Garrison, who lives with MS herself, will AMAZE and ASTOUND you with your own abilities!!  No art experience needed – just curiosity and a little creativity.

And it’s accessible to all – even those with ‘hand issues’. AnCan wants this to be disability-centric so we are sending you art supplies  Our grant funds 4 classes through 2022 – first one on June, 16!

To attend fill out this form by June 9th to receive FREE art supplies, first-come, first-served …. markers, paper, and adaptive writing aides. Class size is limited!

First class – June 16th from 8-9:30pm EST / 5-6:30pm PST

A link will be provided for the class by email!

YOU’LL be drawing Van Gogh inspired sunflowers …. wondering how??

Hannah will break it down into small, manageable petal sizes that you can scribble through bit by bit until voila – SUNFLOWERS AND A VASE!!

And it’s interactive with lotsa space for queries and questions.

Sessions are recorded and available on our Blog and YouTube Channel. And if you don’t want to be discovered, it’s fine to remain anonymous or even shut off your camera.

EVERYONE please complete the form – if we run out of supplies, you’ll have priority for the next class! Your application is how we keep track.

Complete the form by June 9th to receive free supplies and the URL to attend!

Email  Hannah (hannah@ancan.org) or Alexa (alexa@ancan.org) with questions.

Hi-Risk/Recurrent/Advanced PCa Video Chat, June 14, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, May 24, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, May 24, 2022

Two upcoming events to mention first …..

Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer with Drs. Stacy Loeb (NYU) and Justin Gregg, Tue, May 31 @ 8.00 pm Eastern.  Register at https://register.gotowebinar.com/regi…

It Ain’t Your Grandpa’s BPH with Dr. Steve Kaplan (Mt. Sinai, NYC) Wed, June 1 at 8.00 pm  No registration required – just join live https://www.gotomeet.me/AnswerCancer  We’ll be talking all issues around frequency, urgency, nocturia and more. Send your questions to joeg@ancan.org

AND – if you’re a Vet, watch this space. AnCan will be launching a new Vets Group to help navigate medical care. It is not exlclusively prostate cancer, so tell Vet friends. 4th Thursday starting June. If you want to sign up please write Group Leader Joe Gallo joeg@ancan.org.

All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/   Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/

Editor’s Pick: Testosterone lags far behind in recovery – what to do? (rd)

Topics Discussed

Young denovo Mx man with family history; testosterone stays low long after Tx; chemo works when nothing else did; finally ready for Provenge; test early for bone density; bone density meds; Pluvicto TENTATIVELY scheduled; GU med onc at OHSU; another happy Dr. E camper; Lupron vs Zoladex (gosrelin); success with foamy gland PCa; AnCan suports Vets

Chat Log

Pat Martin (to Everyone): 3:32 PM: Schedule for Memorial Monday?

Rick (to Everyone): 3:33 PM: It’s 5th Monday – no meetings in the 5th week but we have 2 presentations. See our Reminder.

Pat Martin (to Everyone): 3:34 PM: Thanks

Julian Morales-Houston (to Everyone): 3:37 PM: To enroll and participate: Color: To participate, please visit the website: www.progressregistry.com. Here, you can read and sign the informed consent and complete the first questionnaire.  You can also scan the QR code below to enroll: If you have any questions, please contact the research coordinator, Laura Gross, at (215) 503-5285 or email laura.gross@jefferson.edu. If you leave a message, please provide the best way for the team to contact you.

Scott (to Everyone): 3:38 PM: Epstein is here https://pathology.jhu.edu/patient-care/second-opinions

Joe Gallo (to Everyone): 3:39 PM: If Tuesday (May 31), it’s an AnCan webinar …

“Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer”

Register at https://register.gotowebinar.com/register/4324977789022538512

AnCan is always considering Quality of Life and Lifestyle. If you’ve attended our live groups you’ll recognize we never get through a meeting without discussing exercise (JIMMY G!!!), diet or stress relief. Last year’s survey revealed that more than 50% of you increased exercise and decreased stress from attending our groups while 38% made changes in their diet.

The upcoming webinar will focus on these issues. It features ‘rockstar’ speaker, Dr. Stacy Loeb, Professor of Urology and Population Health at the New York University School of Medicine and the Manhattan Veterans Affairs Medical Center; and, Dr. Justin Gregg,  Assistant Professor of Urology and Health Disparities Research at UT MD Anderson Cancer Center, of UT MD Anderson Cancer Center in Houston.

Dr. Gregg will speak about his research on diet. Dr. Loeb will speak about her research on a plant-based diet, sleep, and exercise..

And if Wednesday (June1), it’s an AnCan seminar…

‘It Ain’t Your Grandpa’s BPH!’

Now we know a lot of you Gents reading this don’t have a prostate, and if you do, it’s probably radiated to a crisp! Does that excuse you from having frequency and urgency issues ….. for many of you, probably not. In our groups, we hear all too often about how many times you have to get up at night.

Well do we have the Doc for you!! ….. Steve (Dr. Prostate) Kaplan, MD is a nationally recognized urologist at Mount Sinai, NYC who specializes in benign prostate issues …. like frequency and urgency. So while we’ll be talking BPH treatments for those with prostates, we’ll also be talking frequency and urgency issues for the rest of you.

There’s NO REGISTRATION required for this seminar – just enter the AnCan Barniskis Room at 8.00 pm Eastern on Wednesday, June 1st like you would for any of our Video Chat Groups. And bring your questions …. in fact, if you already have something in mind, send it ahead of time to Joe Gallo at joeg@ancan.org.

Rick (to Everyone): 3:46 PM: Your Chat is saved on your computer IF you are joining from the desktop.

Jim Ward (to Organizer(s) Only): 3:58 PM: Gents — I need to switch to phone particiaption for the 2nd half; so if a mystery caller dials in, it’s just me.

Wang Gao Shan – PA (Private): 4:57 PM: Hi Rick, Originally I did the Color Test, yet I was offered a FREE DNA test from Myriad. Do you know this group?

Rick (to Wang Gao Shan – PA): 4:57 PM: We do and we are currently in discussion

Rick (to Wang Gao Shan – PA): 4:58 PM: How did that free offer come about

Joe Gallo (to Everyone): 5:07 PM: Embr Wave.  embrlabs.com

Wang Gao Shan – PA (Private): 5:09 PM: I received an email from ZERO (I have been on their mailing list for along time). I also contacted Myriad agfter reading an article and was offered a free test… they will send me the kit to Portland, Or shortly before I arrive on June 12, 2022.

Jeff Marchi, San Francisco (to Everyone): 5:11 PM: https://www.prostatecancerpromise.org for free DNA test for these with it

Joe Gallo (to Everyone): 5:11 PM: “Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer”

Register at https://register.gotowebinar.com/register/4324977789022538512

AnCan is always considering Quality of Life and Lifestyle. If you’ve attended our live groups you’ll recognize we never get through a meeting without discussing exercise (JIMMY G!!!), diet or stress relief. Last year’s survey revealed that more than 50% of you increased exercise and decreased stress from attending our groups while 38% made changes in their diet.

The upcoming webinar will focus on these issues. It features ‘rockstar’ speaker, Dr. Stacy Loeb, Professor of Urology and Population Health at the New York University School of Medicine and the Manhattan Veterans Affairs Medical Center; and, Dr. Justin Gregg,  Assistant Professor of Urology and Health Disparities Research at UT MD Anderson Cancer Center, of UT MD Anderson Cancer Center in Houston.

Dr. Gregg will speak about his research on diet. Dr. Loeb will speak about her research on a plant-based diet, sleep, and exercise.

And if Wednesday (June1), it’s an AnCan seminar…

‘It Ain’t Your Grandpa’s BPH!’

Now we know a lot of you Gents reading this don’t have a prostate, and if you do, it’s probably radiated to a crisp! Does that excuse you from having frequency and urgency issues ….. for many of you, probably not. In our groups, we hear all too often about how many times you have to get up at night.

Well do we have the Doc for you!! ….. Steve (Dr. Prostate) Kaplan, MD is a nationally recognized urologist at Mount Sinai, NYC who specializes in benign prostate issues …. like frequency and urgency. So while we’ll be talking BPH treatments for those with prostates, we’ll also be talking frequency and urgency issues for the rest of you.

There’s NO REGISTRATION required for this seminar – just enter the  AnCan Barniskis Room at 8.00 pm Eastern on Wednesday, June 1st like you would for any of our Video Chat Groups. And bring your questions …. in fact, if you already have something in mind, send it ahead of time to Joe Gallo at joeg@ancan.org.

Herb Geller (to Everyone): 5:13 PM: I gotta go.  Will see you all in three weeks, as I’m off to Paris soon.

Peter Monaco (to Everyone): 5:16 PM: Have to go. Thanks for another informative meeting!

Mike Yancey (to Everyone): 5:17 PM: Gotta drop off. Thanks Len for hosting. Look forward to next time.

Non-Medical Switching ….. know what we’re talking about?

Non-Medical Switching ….. know what we’re talking about?

Non-Medical switching ….. know what we’re talking about?

In the patient advocacy world, Non-Medical Switching has been a major topic this year.

Non-Medical switching happens when the insurance provider forces a switch to an alternate medication, usually less expensive, to the one your health care provider prescribed. In certain HMO’s, it may actually be your HCP who switches or prescribes a less than optimal drug. AnCan sees this frequently with Kaiser Permanente.

The switched medication frequently may not work as well. For some conditions that can be devastating … for example with mood stabilizers prescribed for mental health care. A recent survey by  the Alliance for Mental Heath Care Access (AMHCA) showed that 40% of patients taking medication to maintain stable mental health did worse when switched. Consequnces can be tragic.

In March, I was in Washinton DC to lobby for the American Urology Association. Switching was one of our talking points with Federal legislators. AnCan also partners with the Alliance for Patient Access (AfPA), a parent organization to AMHCA. With Mental Health Awareness Month coming up, they have just published an attention-grabbing report addressing medcial switching. Read it at https://instituteforpatientaccess.org/non-medical-switching-pushes-patients-to-the-brink/

AnCan continues to advocate on behalf of all our patients. We take Mental Health programming very seriously and now offer 5 related programs:

(rd)

Hi-Risk/Recurrent/Advanced PCa Video Chat, June 14, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, May 16, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, May 16, 2022

Two upcoming events to mention first ….. Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer with Drs. Stacy Loeb (NYU) and Justin Gregg, Tue, May 31 @ 8.00 pm Eastern. Register at https://register.gotowebinar.com/register/4324977789022538512

It Ain’t Your Grandpa’s BPH with Dr. Steve Kaplan (Mt. Sinai, NYC) Wed, June 1 at 8.00 pm No registration required – just join live https://www.gotomeet.me/AnswerCancer     We’ll be talking all issues around frequency, urgency, nocturia and more. Send your questions to joeg@ancan.org

AND – if you’re a Vet, watch this space. AnCan will be launching a new Vets Group to help navigate medical care. It is not exlclusively prostate cancer, so tell Vet friends. 4th Thursday starting June. If you want to sign up please write Group Leader Joe Gallo joeg@ancan.org.

All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/

Editor’s Pick: Lotsa folks and topics – but save the best til last when a Care Partner gives her perspective(rd)

Topics Discussed

Denovo Mx G5+5 calls for triple line attack; handling a recent hi-risk Dx; PSA rise leads to consult with Dr. E; blood clots in bladder down to RT cystitis?; Mod’s lung nodules need Bx; starting IHT after 4 yrs; abi should not prevent Provenge; letting PSA rise for PSMA scan; do low dose steroids impact muscle strength?; darolutamide approved by Bayer; Ac225+Lu177 started; PSA eventually turns down post spot RT; post Brachy +IMRT maybe a PSMA?; enlarged gland post SBRT??; Care partner offers her perspective

Chat Log

Peter Kafka – Maui (to Organizer(s) Only): 5:23 PM: I spoke to Blue Earth a month ago or so and they did not offer Axumin on the Islands at that time. The Ga68 “kit” just came to Honolulu but it is not yet up to speed in terms of reading results according to my oncologist.

AnCan – rick (to Organizer(s) Only): 5:27 PM: Peter – that can’t be correct. There is software immediately available to read the Pylarify scan now.

Peter Kafka – Maui (to Organizer(s) Only): 5:29 PM: That is what my local oncologist told me last week when I met with him. Also my local Rad onc said it is only the Ga68 scan and that is very recent.

Ravi (to Everyone): 5:33 PM: how come no one is talking of radiation

Stephen Saft (to Everyone): 5:34 PM: Isn’t the most urgent thing for Bruce to do is to see a GU oncologist

Jeff Marchi, San Francisco (to Everyone): 5:35 PM: PROMISE is Open to All Prostate Cancer Patients Patients in any stage of treatment or survivorship are invited to join PROMISE.

AnCan – rick (to Everyone): 5:35 PM: Ravi – He’s denovo metastatic …… and he is being seen by a urologist. Radiation should follow ….

eric (to Everyone): 5:35 PM: It was alot of info for bruce make sure he can review this call

Jeff Marchi, San Francisco (to Everyone): 5:36 PM: that quote is from the promise site  https://prostatecancerpromise.org for free dna test for prostate cancer to find dna problems

Henry (to Everyone): 5:43 PM: have to run; thanks everyone

AnCan – rick (to Herb Geller): 5:43 PM: mostly BRCA 2 actually Herb

Ori (Private): 6:03 PM: What is the name of the drug that you mentioned which is used to treat people with the BRCA gene

AnCan – rick (to Ori): 6:06 PM: the drug class is PARP-I; there are several drugs – olaparib, rucaparib, niraparib,talozaparib and more.

Stephen Saft (to Everyone): 6:08 PM: I have a friend who has several had UTI as well as 2 clots. I think he was diagnosed in 2018.

Ori (Private): 6:10 PM: Got it. Thank you.

Len Sierra (to Everyone): 6:11 PM: This UCLA Health monograph about Botox for overactive bladder mentions blood in urine as a side effect. https://www.uclahealth.org/womens-pelvic-health/botox#:~:text=Side%20effects%3A

John Ivory (to Everyone): 6:12 PM: I had blood in my urine 1.5 – 2 years after 40 rounds of radiation, but it only lasted for a day or two. Cystoscopy showed nothing. Haven’t had it again. No pain in urination for me.

AnCan – rick (to Everyone): 6:14 PM: Must have happened to me at lest 5 or 6 times post RT – some at least 5 + yrs out. No pain

AnCan – rick (to Everyone): 6:17 PM: Wed June 1, 8.00 pm Eastern Dr. Steve Kaplan, AnCan Barniskis Room. We’ll be talking BPH, urgency, frequency. Bring your questions.

Joe Gallo (to Organizer(s) Only): 6:18 PM: It’s a drop-in First Wednesday meeting at 8 p.m. EST on Wednesday, June 1. Go here for directions to the Barniskis Room to attend the free program, featuring BPH guru, Dr. Steven Kaplan: https://ancan.org/groups/joining-instructions/ Mark it on your calendar.

John Antonucci – CT (to Everyone): 6:25 PM: 3 cm is correct

Peter Kafka – Maui (to Organizer(s) Only): 6:27 PM: My buddy Mark who was on our call 3 weeks ago or so had a lung mass show up on his CT scan.  Biopsy showed “lung” cancer on top of his recently diagnosed GL-9 PCa.  So he is riding the rails right now.  Trying to push him off the Islands but he may stay here.  Low spirits!

Ben Nathanson (to Everyone): 6:31 PM: Thanks, Frank and Alan — and Rick

Alan Moskowitz (to Everyone): 6:32 PM: Rick and others, did any of you have clots that caused a total urinary blockage, or was it just “minor’ bleeding?

AnCan – rick (to Everyone): 6:34 PM: Minor bleeeding for me

John Antonucci – CT (to Everyone): 6:35 PM: Alan, my brother had the same painful bloody blockage and clots.  This was before his prostate CA diagnosis. Had 2 awful ER visits.  No final explanatiion! No recurrence since–4 years.   No history of radiation, though that might be the most likely for you.

Alan Moskowitz (to Everyone): 6:35 PM: Thanks John and Rick.

John Antonucci – CT (to Everyone): 6:39 PM: From my interaction checker—-prednisone decreases the effect of Provenge.  not an absolute contraindication.

AnCan – rick (to Everyone): 6:43 PM: https://doctors.umiamihealth.org/provider/Marijo+Bilusic/1900896?unified=Genitourinary%20Medical%20Oncology&sort=networks%2Crelevance&from=search-list

Alan Moskowitz (to Everyone): 6:49 PM: I have to leave, thanks everyone.

regina hoover (to Everyone): 7:00 PM: I have an early appointment so good night. gentlemen.

Sylvester Mann (to Everyone): 7:00 PM: Excellent session.  I have to leave.  Keep safe.  See you soon.

Ken (to Everyone): 7:00 PM: Sorry guys I have dinner with friends at 7:15,  got to go.  thanks Ken

Steven Nordstrom (to Everyone): 7:01 PM: Thanks, guys.  Gotta run.

Len Sierra (to Organizer(s) Only): 7:06 PM: Must go, Gents.  G’night!  Good job, Herb.

Peter Monaco (to Organizer(s) Only): 7:17 PM: Gonna run gents!

John Birch (to Everyone): 7:19 PM: Thanks everyone.  Have a good evening.

Frank Fabish – Ohio (to Everyone): 7:20 PM: Good night all. Thanks for listening. Prayers for all.

Herb Geller (to Everyone): 7:22 PM: Just found this: Adding Provenge to Xtandi, Zytiga Reduces Risk of Death by 45% in mCRPC Patients, Data Shows

Stephen Saft (to Everyone): 7:30 PM: Good Night all!

Julian Morales-Houston (to Everyone): 7:32 PM: Need to leave – Another great engaing and informative conversation! Thanks!

Gary Peters (to Everyone): 7:41 PM: I have to sign off.  Take care everyone.

David Muslin (to Everyone): 7:44 PM: Got to roll.  Great work as always

Joe Gallo (to Organizer(s) Only): 7:47 PM: MANopause

Solo Arts Heal with Elizabeth Jameson

Solo Arts Heal with Elizabeth Jameson

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 April 27th, we had the pleasure of hosting Solo Arts Heal with special guest, Elizabeth Jameson!

Elizabeth Jameson is an artist, writer, and health advocate.  Since her diagnosis of multiple sclerosis, she has used medical technology to create art as a way of taking ownership of her disease. She transformed her unsettling, clinical black-and-white brain scans into work that invites others to be curious and contemplate
the beauty of the brain, and encourages conversations about what it means to live in an imperfect body. Her use of strong, vibrant colors is a way to celebrate and honor the journey of what she has had to confront—the disease of her brain—and to challenge others to question what it means to be imperfect, which is part of the universal human experience.

As her disease has progressed, her practice has evolved. She now concentrates on writing and publishing essays about illness and disability. In 2021, she created MS Confidential, a monthly web series that provides a safe space for raw and informal discussions about the chaos of daily life for people living with multiple sclerosis.

Watch the performance here:

 

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