If Medicine Doesn’t Come to You, Go to It!

If Medicine Doesn’t Come to You, Go to It!

If Medicine Doesn’t Come to you, Go to the Medicine!

You know what they say about Mohammed and the Mountain …… if the mountain will not go to Mohammed, Mohammed must go to the mountain! Well it’s often like that today with cutting edge medicine – and even not so cutting edge if you live in out of the way places like Maui, HI where our Board President, Peter Kafka, resides. It’s all part of Being Your Own Best Advocate…… (rd) PS Peter has asked me to clarify, he wrote what follows – not me. But I guess most of you can figure that out!

Back in 2014 when I was first diagnosed with advanced prostate cancer, my younger son who was 38 years old at the time was in the urologist’s office with me getting the news.  As I was seated on the exam table, he was standing in the corner leafing through the booklets and pamphlets about prostate cancer while we waited for the doctor to deliver the bad news.  My son, holding up a booklet exclaimed to me; “Dad, this literature is older than me!”  Right away we both knew we were in the WRONG place.

Unfortunately, so many men and women reside or walk into the “wrong” place when it comes to getting access to the most up to date technology in terms of treatment or diagnostic tools.  Little did I know back then.  I lived at that time under the illusion that the “Doctor” knew everything and would of course be up to date with the latest and greatest.  Not so, as I quickly learned.

One of the great values that I have found in participating regularly in our AnCan prostate cancer support groups is the experiential reporting on all the new cutting-edge treatments and diagnostic tools that are emerging and available.  Recently one of our number took advantage of the new technology of Micro Ultrasound to guide a biopsy.  Apparently, this is found to be even better than the 3T multi-parametric MRI in determining just where to poke the needle and take a tissue sample, leading to a far more accurate diagnosis.  It can detect small, but significant lesions within the prostate that might otherwise be missed.

The rub however, like any new advancement is that not every facility or doctor will be in the “know” or have access to such tools or treatments.  Don’t I know this well, living here on the Island of Maui in the middle of the Pacific Ocean.  The lesson for all of us is that we should carry a business card stating; “Have Suspicion Will Travel”.  Please don’t wait for technology to come to your doorstep or for enlightenment to come to your doctor.  Your life is way too important to me.

Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, Apr 19, 2021

Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, Apr 19, 2021

Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, Apr 19, 2021

Editor’s Choice: Lively discussion on mental health brought on by treatment, especially in the Chat. And later on, hot & cold tumors (rd)

Topics Discussed

Recurrence 5 years after RP; recurrence after brachy + IMRT; Provenge; Caregiver discusses depression and anxiety; prostate in teh bladdernech impacts RT choice; 2nd opinion from Dr. Morgans may change treatment; Xgeva dosing; hot vs cold tumors impact immunotherapy; end of chemo in sight; Lu177 PSMA working; cyclophosphamide; HT holiday appears over

Chat Log

Bruce Bocian (Private): 5:04 PM: Wearing my new T-shirt tonight!

Rick Davis (to Bruce Bocian): 5:06 PM: I see …. nice job! Give it a plug …..

Bruce Bocian (Private): 5:06 PM: I did before you came on.

Len Sierra (to Everyone): 5:26 PM: Antonarakis and Denmeade

Jake Hannam (to Organizer(s) Only): 5:29 PM: CT and bone scan will probably be redundant if he can get the PET/CT approved

Pat Martin (to Everyone): 5:42 PM: Good night, all. See you next week

Jake Hannam (to Organizer(s) Only): 5:44 PM: https://moffitt.org/find-a-doctor-search?program=Genitourinary+Oncology&cancerType=Prostate+Cancer&clinicalSpecialty=&gender=&q=

Jeff Marchi (to Everyone): 5:45 PM: no CT or bone scan

Alan Dibble (to Everyone): 5:46 PM: Alan does not wish to ask how everyone deals with the emotional aspect of this disease. He had prostate removed, radiation therapy and now on chemo, plus injections of eligard. (Cancer spread to hips and femur after 1 year after radiation).. He goes through much anxiety and depressions. He is 69 and was diagnosed at 56 years of age. He does not wish to speak. I’m getting involved on his behalf. I’m his wife of 20 years.

Jake Hannam (to Organizer(s) Only): 5:50 PM: Alan may wish to join Speaking Freely

Jake Hannam (to Everyone): 5:56 PM: Venlafaxine is used to treat depression. It may improve your mood and energy level, and may help restore your interest in daily living. Venlafaxine is known as a serotonin-norepinephrine reuptake inhibitor (SNRI).

Tad (to Everyone): 5:57 PM: venlafaxine = Effexor (er)

John Ivory (to Everyone): 5:57 PM: Many people use the brand name for venlafaxine, which is Effexor XR

Rick Davis (to Everyone): 6:00 PM: Let’s not push venlafaxine – we are not expert enough to do that! We have expertise in PCa – we don’t have expertise in mental health. And we know better how men respond to the PCa drugs.

Tad (to Everyone): 6:07 PM: Ok….. all I meant. isthat I have experience in mental health

John Ivory (to Everyone): 6:08 PM: Are you a physician or a therapist, Tad?

Tad (to Everyone): 6:08 PM: A lifetime of personal experience. Are there physicians here for prostate? I’m just offering help like others are

Rick Davis (to Everyone): 6:09 PM: an SSRI can effect one person well and not another. They may need an SNRI.

Tad (to Everyone): 6:10 PM: yep or maoi……or I had shock treatments, etc etc etc. just like there are generalities for prostate, there are generalities with mental….general places to start. Bipolar type 2 since 1988. Been in psych hospitals many times. Electric shock treatments. Every med there is. Best dr’s in the country. This cancer stuf has been. awalk in the park compared to having. alife with. a major mental illness. Haven’t been back here for over a year. Finally was able to get back here tonight…..but this makes me depressed. So I’ll leave. Have a nice night.

Dennis McGuire (Private): 6:24 PM: Hi Rick, Is Dr. Morgans leaving Northwestern ? Heard the end of that conversation. Thanks

Rick Davis (to Dennis McGuire): 6:24 PM: Yup – early July. She’s going to Dana-Farber.

Dennis McGuire (Private): 6:26 PM: Sorry to hear that. Great hire by Dana-Farber ! She is a Superstar. I remember she has a history with Dana-Farber in her earlier days

Rick Davis (to Everyone): 6:36 PM: https://www.fiercebiotech.com/research/epizyme-s-ezh2-blocker-boosts-immuno-oncology-response-prostate-cancer-models    Tazverik

Vincent Wilmot (to Everyone): 6:38 PM: Thanks all. Have to jump off now. Will stay in touch.

Jake Hannam (to Everyone): 6:38 PM: Mark your calendars for what AnCan expects to be a humdinger of a webinar on Thursday, April 29 at 8 pm Eastern. Advisory Board Member and Co-Director of the Parker Institute for Cancer Immunotherapy at UCSF, Dr. Larry Fong, will answer “Will Immunotherapy Change Your Prostate Cancer Treatment?” . Register at https://bit.ly/3thuPmq to learn how Superman came to visit Larry!

Ken (to Everyone): 6:41 PM: Got to go… pilots telling me turn off electronics

Jake Hannam (to Everyone): 6:42 PM: Sorry. Can’t attach the flier. See our Facebook page: https://www.facebook.com/answercancer/photos/a.1872701729640708/2908943646016506/

Bill Franklin (to Organizer(s) Only): 6:43 PM: I’ve got to drop guys. Need to help my son finish up a little bit of homework so he can get to bed at a reasonable time. Take care all.

Jake Hannam (to Everyone): 6:58 PM: dexamethasone (1 mg/day in the evening) with cyclophosphamide (50 mg/day in the morning).   Zofran

Ted Healy (to Everyone): 7:02 PM: Got to go folks, thank you all!

MS Art with Hannah Garrison

MS Art with Hannah Garrison

Support comes in many forms, and here at AnCan, we are so blessed to have Hannah Garrison, a fantastic MS activist, moderator for our MS Virtual Support Group, and artist.

In honor of MS Awareness Month (March) we had a phenomenal time with adaptable art of all skill levels. We used paint and old gift cards to create masterpieces. We even had adorable kids join for a family night!

Feel free to create this art project anytime (no matter what community you belong to) with the video below: (Scroll down for supply list)

 

 

Supply list:
1. Acrylic paint
2. paper plate or palette
3. old, empty gift card or old credit card – the paint will ruin it, so make sure they know it can’t be usable
4. napkins – lots!! things will get messy
5. paper – any sturdy paper – cardstock, watercolor paper, acrylic paper
6. brush – optional, for mixing colors on your paper plate/ palette

 

We will be offering more art related support soon, including an AnCan art gallery. If you’d like more information or have any suggestions, please email me at alexa (at) ancan.org!

 

For information on our peer-led video chat MULTIPLE SCLEROSIS 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 Support – Men & Caregivers Recording, Apr 19, 2021

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Apr 13, 2021

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Apr 13, 2021

 

Editor’s Choice : We learn about a partial removal of the prostate for urinary reason – a simple prostatectomy; and how this can complicate identifying whether PCa has spread. (rd)

Topics Discussed

Hawaii KP patient needs better follow-up on recurrence; a partial removal of the prostate confuses what’s going on; 80 yr man wonders how to handle recurrence; Lu177 PSMA trial experience; & … I130 PSMA trial experience together with jaw issues; cyclophosphamide oral chemo; the AUS works!! (artificial urinary sphincter); PSA still rising on ARV110 trial; experience with return of testosterone; follow-up after 4+5 RP with a positive node.

Chat Log

Rick Davis (to Everyone): 3:03 PM: OMG …… Don Price – the Mouse returns!! Bob Bordiga also coming out the woodwork

Don Price (to Everyone): 3:06 PM: Si…sorry to have been away so long.

Jake Hannam (to Everyone): 3:30 PM: Axumin PET/CT scan

Jake Hannam (to Organizer(s) Only): 3:40 PM: simple prostatectomy or TURP?

John Ivory (to Everyone): 3:45 PM: https://cancer.osu.edu/find-a-doctor/search-physician-directory/anish-b-parikh Pat Martin (to Everyone): 3:46 PM: Any biopsies?

Jake Hannam (to Everyone): 3:51 PM: thanks john

Pat Martin (to Everyone): 3:53 PM: What Gleason score?

John Ivory (to Everyone): 3:53 PM: he said 4+4

Pat Martin (to Everyone): 3:54 PM: Thanks. I missed that

W Klass Toronto (to Everyone): 3:56 PM: Need to leave. Thanks for the invite.

Pat Martin (to Everyone): 3:57 PM: I was looking forward to hearing from you.

Jake Hannam (to Everyone): 3:57 PM: thanks for joining us. Come back soon!

Herb Geller (to Organizer(s) Only): 4:03 PM: I just got an e-mail from Collins at Gt saying my PSA yesterday was 1.4, and that was after I did stationary bicycle. The previous GT number was 1.8!

Jake Hannam (to Organizer(s) Only): 4:03 PM: congrats Herb!

Pat Martin (to Everyone): 4:08 PM: heading out. See all next week.

John Ivory (to Everyone): 4:16 PM: I’ve go to run to another meeting. Good to see everyone!

Russ (to Everyone): 4:25 PM: Heading out as well. Have a good night!

Bob (to Everyone): 4:30 PM: Is an axumin scan the same as a PSMA PET with Galium 68?

Jake Hannam (to Everyone): 4:30 PM: oral chemotherapy drug called cyclophosphamide (Cytoxan)

Herb Geller (to Organizer(s) Only): 4:30 PM: No, it uses a different tracer from PSMA. Axumin uses a different tracer

Len Sierra (to Everyone): 4:31 PM: Bob, no, PSMA-PET is more sensitive than Axumin

Rick Davis (to Everyone): 4:36 PM: cyclophosphamide https://pubmed.ncbi.nlm.nih.gov/31399784/

Bob (to Everyone): 4:40 PM: Does anyone have experience with BiPolar ADT? If so, did it work?

Rick Davis (to Everyone): 4:41 PM: Bob – we have a webinar on BAT … search for Denmeade on our website https://ancan.org

Rick Davis (to Everyone): 4:42 PM: Anecdotally we only see short term results from BAT, but JH is reporting better results. Some of our guys have had more conversations with JH. This is a longer discussion than the chat window.

Bob (to Everyone): 4:43 PM: Thank you everyone. I have to leave due to a 1:45appointment which was previously scheduled.

Jake Hannam (to Everyone): 4:44 PM: ARV-110

Jeff Marchi (Private): 4:48 PM: you asked whether Santa Clara is where the medoc is located. when I had my prostate removed I had to drive from San Francisco to San Jose. that is where the surgeons are located. must be where medoc is located

Rick Davis (to Jeff Marchi): 4:50 PM: No he’s mid-Peninsula

Herb Geller (to Everyone): 5:16 PM: I gotta go. See you on Monday

Len Sierra (to Everyone): 5:23 PM: Goodnight, fellas. See you next week.

United We Fall, Divided We Stand: The Cultural War Between High- and Low-Risk Prostate Cancer Patients?

United We Fall, Divided We Stand: The Cultural War Between High- and Low-Risk Prostate Cancer Patients?

Here are some thoughts from our own Howard Wolinsky. He is a Chicago-based medical writer and author. His new book is “Contain and Eliminate: The American Medical Association’s Conspiracy to Destroy Chiropractic.” For more information, go to Containandeliminate.com. He also contributes a blog, “A Patient’s Journey,” to MedPageToday.com. He has been on active surveillance for 10 years.

 

Active surveillance for men with low-risk cancers has been the Rodney Dangerfield of urology. We men on AS — close monitoring of our cancers — get little to no respect from men being treated for prostate cancer who can experience a host of serious side effects.

AS has experienced gains over the past five years. The American Urological Association in 2017 stated in new guidelines that clinicians should recommend active surveillance as “the best available care option for very low-risk localized prostate cancer patients. (Strong Recommendation; Evidence Level: Grade A).”

This is a far cry from when I was diagnosed in December 2010, and my first urologist told me he could cure my cancer — a tiny Gleason 6 in a single core — “next Tuesday” when he had an opening in his OR. Back then, 6–10% of men like me opted for AS. Or, to put it another way, 90–94% sought “definitive” treatments, mostly radical prostatectomies.

A new generation of urologists, following the guidelines, is increasingly resisting the urge to perform surgery and rather recommends that men with low-risk Gleason scores of 3+3 and some men with favorable intermediate-risk Gleason scores of 3+4 go on AS.

There has been a surge in the past five years in the proportion of American men opting for AS. Some experts estimate that as many as 50–60% of eligible men now choose AS. (Again, 40–50% still opt for prostatectomies or radiation, a contrast from 90% who opt for AS in Sweden and the Netherlands.)

In May 2017, I described in my MedPageToday blog the lack of support services for men on AS. The philosophy then was to combine men on the full range of diagnoses, from very low-risk to advanced cancers, and treatments.

However, the voices of men worried about their next biopsy or MRI could be drowned out by those of men with impotence or incontinence as collateral damage from radical surgery, to those with hot flashes from hormone therapy, or “brain fog” from chemotherapy.

Men with low-risk cancer attend these meetings and often don’t return.

Some think these side effects are their future. But they’re not. About 50% of men on AS eventually end up being treated, though frequently they switch to treatments because of anxiety rather than the disease progressing.

Some men experience anxious surveillance; they may have low-risk disease but they can’t co-exist any longer with a cancer that can be cut out or zapped with radiation or lasers.

I encountered outright hostility when I suggested in my blog four years ago that separate support groups be created for men on AS.

One group, known as the “warriors,” argued all men with prostate cancer are in this together in what they like to call the “reluctant brotherhood.” But these. men with aggressive treatments and diseases may not realize men with low-risk disease are being scared off and want to stay away from the brotherhood altogether.

It still isn’t widely acknowledged that there is a cultural divide between these groups of men with very different diseases and side effects, different views of their diseases, and different emotional needs.

Some of the support and advocacy organizations have been trying to meet this need for men on AS. Groups, including AnCan/Us Too, Active Surveillance Patients International, Cancer ABCs, Malecare, Inspire (a virtual group from Us TOO International), Prostate Cancer Research Institute, and ZERO — The End of Prostate Cancer have been making some strides with virtual, asynchronous and (until COVID-19) in-person support groups.

About a year and a half ago, I helped start a monthly virtual support group for AnCan and UsToo believed to be the first of its kind in the U.S. The group has grown to a weekly meeting. We hold webinars featuring leading experts on AS that draw hundreds of men virtually and hundreds more on video replay,

At last, AS seemed to be finding its place in the support sun. Then, I encountered negative attitudes on the part of people who ought to know better — support group leaders.

One impatient leader in effect asked me when men on AS would just grow up, “bite the bullet,” put on their big boy pants and stop whining about biopsies that could save their lives. But the man who said this had undergone hormonal treatment and didn’t quite understand that men on AS are not “whiners” or “crybabies” but rather are coping with their own problems.

I told him there is a cultural gap between men who were being treated and low-risk men like me. Men with more higher-grade cancers who are being treated may be fighting for their lives while those on AS are worrying about more fundamental issues such as “When should I have a confirmatory biopsy” or “Is gadolinium contrast dangerous?” that are just as real to them.

I was frustrated about another incident recently that demonstrates how little respect AS may be getting from some men with higher Gleason scores and collateral damage from treatment.

As an Us Too group leader, I got a note from HQ seeking group leaders willing to talk in pop-up support groups about such topics as surgery, radiation, hormone therapy, and helping the newly diagnosed and caregivers. Us Too made the request on behalf of ZERO, which wanted to include sessions at its annual Summit this year.

I read the list over. ZERO, a savvy organization I have worked with, omitted active surveillance as a topic. I pointed this out and ZERO graciously added a support “lounge” devoted to AS. An oversight, sure, but no slight intended. Three of us AS support group moderators volunteered to participate.

I was stunned at what happened at the session. We had about 25 attendees. Apparently, most had been treated or were considering treatment for more advanced cancers. We did what we could to help and refer the men to support groups more suited to them.

We suspected there were some men on AS lurking but not talking.

One very vocal group leader represented a prostate cancer support group for all-comers. He said he had undergone a radical prostatectomy decades ago. He said he knew about AS but admitted he wasn’t much of a fan.

I gather he thought that aggressive therapy was inevitable so why not get it over with. He insisted his group did what it could to support men on AS.

But he said he found these men to be scared rabbits (my term). I can understand why. They were attending a support group geared toward men coping with severe side effects and those fighting for their lives run by a leader who didn’t really believe in AS as an option.

Good intentions gone awry.

I suspect there is a lot of this going on in the support world. I wonder how many men with low-risk or favorable intermediate-risk prostate cancer attend these groups and are steered into undergoing prostatectomies or radiation therapy when none is needed — at least not immediately.

I contrast these AS skeptics with my friend Bob Allan, a support group leader from Prostate Cancer Support Canada/Burlington in suburban Toronto. Allan was treated with radiation years ago and has fared well. But he supports AS as an option and regularly attends our AnCan/UsToo virtual meetings to learn about the latest on AS to share with his members.

It’s time to end this undeclared culture war. I think many support group leaders need to be educated about AS especially since the proportion of men with prostate cancer opting for AS is on the rise. Or these support group leaders need to refer AS patients to support groups with expertise in active surveillance.

Men on AS will be better served by taking these approaches than suffering in silence in their groups.

Special Presentation: Transperineal Biopsies and Micro-Ultrasound

Special Presentation: Transperineal Biopsies and Micro-Ultrasound

On April 7th, we had a packed house to see Dr. Andres F. Correa (Fox Chase Cancer Center’s Department of Surgery in the Urologic Oncology Division) at our Active Surveillance Virtual Support Group.

He briefed our community on two of the hottest technologies in the field: transperineal biopsies and micro-ultrasound. He explained that TP biopsies virtually eliminate deadly septic infections and also offer the urologist easier access to the anterior section of the prostate gland. Correa said his group uses micro-ultrasound imaging of the prostate as a complement to mpMRI imaging.

We want to thank Dr. Correa for providing such helpful information!

Watch this presentation 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.

PSMA/PET Clinical Study – Veterans Needed!

PSMA/PET Clinical Study – Veterans Needed!

At AnCan, we love our veterans of any branch, and we sincerely thank you for your service. Our AnCan “Vet-In-Chief” Marine Captain Joe Gallo recently learnt about a clinical trial at the West Los Angeles VA that offers 18F-DCFPyl PSMA scanning for any Vet whatever their diagnosis. Mike Crosby, CEO of Veterans Prostate Cancer Awareness together with ZERO are working to find transportation subsidies. It is open and available to any veteran at no cost!

What is PSMA-PET imaging? It has emerged as a new frontier in prostate cancer diagnosis and treatment.

The key advantage to PSMA-PET imaging is the fact that it’s a lot more sensitive than standard imaging. It picks up lymph nodes, visceral metastases, bone metastases, and does it at a very low PSA level

PSMA is a membrane-bound protein that’s highly expressed in 90% of prostate cancer.

This is the first anniversary of a second study. Close to 200 Veterans have been enrolled and benefitted from PSMA imaging at West Los Angeles VA medical center. The first study also enrolled over 160 subjects with newly diagnosed prostate cancer from all around the country.

Read more about this study: https://clinicaltrials.gov/ct2/show/NCT04390880

For more information, please reach out to Joe at joeg (at) ancan.org

If Medicine Doesn’t Come to You, Go to It!

SEVEN YEARS for Peter Kafka …… a meaningful number!

Peter Kafka, our Board Chair and Lead Moderator for several of our video-chat virtual support groups, poignantly reflects this week on the meaning of 7 years living with his prostate cancer. (rd)

One subject that comes up fairly often in our prostate cancer support calls is “fatigue”.  Usually in the context of dealing with physical fatigue as a side effect of various treatment drugs.  But I am thinking today about a different level of fatigue that affects us mentally and emotionally.  We hear a lot about this in regards to the ongoing Covid-19 pandemic.  A year or so into it and people are crying out, “Enough already!”.  But I would guess that many of you feel the same sentiment regarding your ongoing experience with a prostate cancer diagnosis.

I have reached my 7-year anniversary since my official diagnosis of prostate cancer.  What is it about the number seven?  Yes, it has some kind of man-made spiritual significance.  The seven colors of the rainbow, the seven days of the week, Snow White and the Seven Dwarfs and of course the Seven-year Itch.  But as I (celebrate?) this seven-year anniversary of dealing with my prostate cancer I hear myself crying out, “Enough Already!”.  Fatigue is setting in.

I have done my best to look at this disease from a wide variety of angles.  The friendships I have made with many of you.  The increased understanding of the dynamics of prostate cancer among an ever-increasing body of men and women.  The empowerment of taking on the job of being one’s own best advocate.  But in honesty, prostate cancer and all the accompanying side effects of the variety of treatment modalities that I have, and continue to experience, bring on a good deal of mental and emotional fatigue.

I don’t believe that medical science graphs this fatigue factor.  We read a lot about “overall survival – OS” or “progression free survival – PFS”.  I guess the category of “Quality of Life” might come closest to what I am talking about, but it doesn’t quite capture the essence.  I suspect that any of you who have been on this journey for any length of time know what I am talking about.  I don’t have an answer, and I am certainly not selling any kind of snake oil for treatment.  I know in my heart and mind that this bump in the road will pass and I will move forward.  I always do.

The TALK – Inherited Mutations

The TALK – Inherited Mutations

We had our first The TALK, a series of webinars addressing how families speak to each other about their health conditions, of 2021! On Wednesday March 31st, we were honored to have many “pairs” of different types talk about inherited mutations.

With opening commentary and resources from Melissa Rosen (Sharsheret) and Lisa Schlager (FORCE), Rick then introduced moderator extraordinaire, Lindsey Byrne!

We met Ilana Feuchter, with mom, Rozzie Brilliant (BRCA), Peter Kafka, with son Joel Kafka (Lynch mutation, MSH6, and somatic BRCA), sisters Karin Roseman and Stefanie Tsantilis (BRCA), and Dr. Pamela Munster, and with son, Max Daud (BRCA). They shared open and honestly about their own “talks”, and shared many relatable experiences.

We sincerely thank our medical experts, panelists, and partners: UCSF Center for BRCA Research, FORCE, The James The Ohio State University Comprehensive Cancer Center, NOCC, Sharsheret, and Bag It Cancer. Many thanks to Myovant Sciences for sponsoring.

Watch this amazing webinar, here:

 

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

Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, Apr 19, 2021

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Apr 5, 2021

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Apr 5, 2021

 

Editor’s Pick Should docs make overall survival predictions – it scares a newly diagnosed man, while an old hand laughs! (rd)

Topics Discussed

High-risk PCa treatment decision; recurrence – beware of overall survival preductions; durable remission and NED; experiencing spinal collapse; Spot Radiation; scanning for recurrence; ARV110 trial experience; can you add a drug to your trial; lymphedema issues; CBC questions; picking up rib lesions; 5 yrs out when the doc didn’t give you 5; record your medical meetings; estrogen patch for hot flashes; more chemo …. & more & more; gabapentin for neuropathy; PBRT vs IMRT; going off ADT to get a scan result; …. & lots of nutrition discussed in the Chat Log!

Chat Log

Jeremy (to Everyone): 5:21 PM: https://www.fda.gov/news-events/press-announcements/fda-approves-first-psma-targeted-pet-imaging-drug-men-prostate-cancer

Ken (to Everyone): 5:24 PM: hey jake…. chemo #15 this past friday so dealing with the side effects. alk phos continued down 10 points and psa down 2

Jake Hannam (to Everyone): 5:26 PM: Awesome!

kang (to Everyone): 5:38 PM: Nice!

Jake Hannam (to Organizer(s) Only): 5:43 PM: Axumin

Jake Hannam (to Everyone): 5:44 PM: https://ancan.org/contact-us/

Ted Healy (to Everyone): 5:46 PM: record your meetings

Jake Hannam (to Everyone): 5:47 PM: Yes we do, Ted (this and several others)

Ted Healy (to Everyone): 5:48 PM: no, meetings with the dr

John I (to Everyone): 5:52 PM: Wow, Sylvester, that was inspirational!!!

Len Sierra (to Everyone): 5:53 PM: I agree with John – we need to hear more from Sylvester on these calls!

Jake Hannam (to Everyone): 6:26 PM: Radium 223 negates future use of lutetium?

Jake Hannam (to Everyone): 6:27 PM: Is that true?

Herb Geller (to Everyone): 6:36 PM: I don’t know Ra-223 negates anything but it doesn’t seem that promising compared to other therapies.

Rick Davis (to Everyone): 6:38 PM: radionuclide trials usually prevent particpation if you have already taken a radionuclide. check the Lu177 trials

Carl Forman (to Everyone): 6:52 PM: Thanks so much to Scott Hogan for being able to participate here tonight. Hope to see you here again. Best wishes.

Ted Healy (to Everyone): 7:06 PM: I’m sorry, have to go. thank you all!

Vanita Gaglani (to Everyone): 7:10 PM: walnuts, greens,soaked fenugreek seeds ( 1 tsp per day) real licorice roots, sunflower seeds, spearmint tea all help with hot flashes. Len Fenugreek seeds can be bought in any Indian grocery store.If you have an Indian grocery store near you they have the greens called Methi. Some of the anti carcinogenic ,anti inflammatory natural products include Turmeric, cummin seeds, cinnamon.

eric (to Everyone): 7:16 PM: is this for anti inflammatory

Carlos Huerta (to Everyone): 7:19 PM: Alpha Lipoic Acid

Vanita Gaglani (to Everyone): 7:19 PM: yes. But get real turmeric powder , not capsules.1/4 tsp each you can put all in mik and drink or in tea, warm water. I am happy to answer any questions. hello@vanitasrehab.com. These are natural anti inflammatories.

Rick Davis (to Everyone): 7:22 PM: IMRT vs PBRT side effects http://prostatecancerinfolink.net/2012/02/01/first-directly-comparative-data-question-safety-of-pbrt-vs-imrt/

Carlos Huerta (to Everyone): 7:23 PM: Get a PSMA PET to target the protons

Vanita Gaglani (to Everyone): 7:24 PM: For all treatments try to keep the bladder filled 8-10 oz of urine.

Rick Davis (to Everyone): 7:24 PM: Not necessarily true Vanita – as we heard earlier

Vanita Gaglani (to Everyone): 7:24 PM: we do not need 32 oz of fluid because most men cannot hold it.or women.

John I (to Everyone): 7:26 PM: I needed a full bladder, but I believe it was 24 ounces (though I’m small)

Vanita Gaglani (to Everyone): 7:28 PM: 24 oz is difficult to hold

John I (to Everyone): 7:29 PM: They timed it–drank it 20 min before treatment & tretament was quick.It was hard to hold only if the machine went down & I had to wait a few extra minutes

Vanita Gaglani (to Everyone): 7:30 PM: if anyone can tolerate plain yoghurt eating that helps a lot too Agreed John.

Bruce Bocian (to Everyone): 7:39 PM: please type those letters of that stanford test in the chat box, not sure I heard it correct

Rick Davis (to Everyone): 7:40 PM: 17F DCFPyl

Peter Kafka (to Everyone): 7:40 PM: 17F DCF-PYL PSMA PET CT

John I (to Everyone): 7:42 PM: Great session, thanks Rick

Jeremy (to Everyone): 7:42 PM: Prayers Scott

Vanita Gaglani (to Everyone): 7:42 PM: good night