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

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 1, 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 1, 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.

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

Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Oct 18, 2021

Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Oct 12, 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:A tough choice between Herb goes fishin’ and reading PSMA scans …. very tricky still (rd)

Topics Discussed

VERU-111 trial – oral chemo; recurrent diesease at age 56; RNA sequencing but maybe not quite ready for prime time; what next after cyclophosphamide; is CHEK2 significant; Provenge discussion; Lu177 trials; brain met slows progression to trial; dubious CBCs; reading PSMA scans … x 2!; when to start chemo; SBRT dosage; CT vs PSMA SCANS; how long to remain on ADT; Herb goes fishing!

Chat Log

Jake Hannam (to Everyone): 5:22 PM: GU (genito-urinary) medical oncologist

rick stanton (to Everyone): 5:29 PM: might consider immunotherapy – might consider sequencing and considering appropriate targeted therapy (or both)

Pat Martin (to Everyone): 5:34 PM: A good rule of thumb I stay close to: ​Pain is NOT therapeutic

Jefff Preston (to Everyone): 5:37 PM: Wouldn’t Mr. Ernst’s father have taken some much more challenging chemo… different than the meds now.

Rick Ernst (to Everyone): 5:49 PM: Thanks for listening to my story. I need to leave the meeting.

rick stanton (Private): 5:54 PM: I could weigh in on targeted and immunotherapy if you wish

Joe Gallo (to Everyone): 5:59 PM: germline/iinherited. somatic.

rick stanton (to Everyone): 5:59 PM: I recommend whole exome RNASeq as well

rick stanton (to Everyone): 6:00 PM: Tempus XT will run that test in addition to ~648 “hot spot” genes. This can provide your med oncologist insights into immunotherapy options

Jake Hannam (to Everyone): 6:02 PM: You can buy it but ask about the trial (free)

Rick Davis (to Everyone): 6:03 PM: Embr Wave trial https://myrcc.redcapcloud.com/?#join=352a5988a6ee4219888676c627c3bd2f .

Rick Davis (to Len Sierra): 6:08 PM: Will RNA Seq show anything that is currently available???

Len Sierra (Private): 6:10 PM: My guess is no.

Carl Forman (to Everyone): 6:11 PM: Interesting 30 min. video with Dr Aparicio at MD Anderson – PC & Immunotherapy, Changing the outlook for metastatic PC https://summit.cancerresearch.org/event/prostate-cancer-and-immunotherapy/

Rick Davis (to Everyone): 6:14 PM: Most interesting point made by Aparicio – that bone Mx is more resistant to immunotherapy!

Joe Gallo (to Everyone): 6:22 PM: Most common somatic are Oncotype Dx, Prolaris, Decipher.’

Rick Davis (to Everyone): 6:26 PM: Joe – those are not really suitable for advanced PCa

rick stanton (to Everyone): 6:30 PM: gotta help my wife – so I need to hop off – THANK YOU all!! Look forward to next time

Rusty (to Everyone): 6:31 PM: Have a great week everyone! I will not be on next week due to my shoulder replacement next Monday.

Jake Hannam (to Organizer(s) Only): 6:31 PM: good luck rusty!

Rick Davis (to Everyone): 6:33 PM: Wish you the very best with your shoulder, Rusty! Watch the recording to find out how Herb did at Reel Recovery

Jake Hannam (to Organizer(s) Only): 6:40 PM: Hi Herb!

Len Sierra (to Organizer(s) Only): 6:41 PM: What happened Herb? Did you get a fish hook through your finger??

Herb Geller (to Organizer(s) Only): 6:42 PM: :Greetings from Reel Recovery

Joe Gallo (to Organizer(s) Only): 6:42 PM: Take pictures Herb!

Jake Hannam (to Everyone): 6:46 PM: Procrit

Len Sierra (to Everyone): 6:46 PM: Procrit = erythropoietin

Jake Hannam (to Everyone): 6:46 PM: https://www.procrit.com/

Bill Bradford (to Everyone): 6:47 PM: Thanks to all for listening to my story and providing great information. I will try to be a regular / frequent attendee to this group, as well as the U60 group. I did have one generic question for the group. I just started Zytiga + prednisone (in addition to the eligard I started 6 weeks ago). I know Zytiga is tough on the liver. I do enjoy a glass or two of wine each evening and a few beers on the weekend. Is it recommended to strictly abstain while on Zytiga?

Pat Martin (to Everyone): 6:47 PM: When I was anemic they prescibed Fe pills and licquid meds. All they did was constipate me. I brought it to my PCP she had me get a couple infusions.

Jeff Marchi (to Everyone): 6:49 PM: you can drink moderate amounts without issues, normally I drink a glass of wine or a beer every day, tests are good for liver and kidney dr never said to stop CONTINUED AT

Bruce Bocian (to Everyone): 6:50 PM: Pecking order at U of Chicago Adekunie “Kunie” Odunsi, Director ​Dr. Walter Stadler, Deputy Director, this is who I see.

Martin Wice (to Everyone): 6:54 PM: Have to go. Thank you.

Jake Hannam (to Everyone): 6:54 PM: I suggest you get a copy of the CD and ask for a 2nd opinion

John Ivory (to Everyone): 7:00 PM: I saw Szmulewitz at UChicago for a year (till my insurance didn’t work)–thought he was fantastic

Bruce Bocian (to Everyone): 7:00 PM: Good night!

Alan Moskowitz (to Everyone): 7:00 PM: Thanks Jake.

Joel Blanchette, Reston VA (to Everyone): 7:00 PM: Impression IMPRESSION: No definite marrow replacing lesion in the right occipital condyle. Focus of increased uptake on recent PET CT could be related to degenerative change. Multilevel degenerative changes in the cervical spine. Images and interpretation personally reviewed by: Arvin Kheterpal, MD

Bill Bradford (to Everyone): 7:00 PM: I have to drop off guys – glad to be part of the group.

Alan Moskowitz (to Everyone): 7:01 PM: Thanks everyone for your thoughts. Have to leave now.

Joe Gallo (to Everyone): 7:05 PM: joeg@ancan.org

Stephen Saft (to Everyone): 7:15 PM: I am going to say good night. I am exhausted. It is great to be part of these high level discussions. i appreciate the opportunity to listen and share. Good Night. Night.

Jake Hannam (to Everyone): 7:15 PM: Good to see you!

Ken (to Everyone): 7:22 PM: thanks guys…got to go! good job LenJ

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

Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Oct 12, 2021

Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Oct 12, 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: How do you explain to your medical team that AnCan is a great resource – some guys address that this week (unsolicited!!!) rd

Topics Discussed

High Risk diagnosis poses treatment questions; composing questions to ask your doc; addressing lung nodules; intestinal issues from enzalutamide???; testosterone is flowing back; talking to your medical team about AnCan; using Trimix; serial chemo may not be working; Caregiver has dad resisting treatment; trouble switchng medical oncologists.

Chat Log

Sylvester Mann (to Everyone): 3:32 PM: Good seeing you also. I’m doing ok. I have not been attending because I get the time mixed up plus I not usually home at this tine (smile).

Herb Geller (to Organizer(s) Only): 3:40 PM: So I got into Reel Recovery for next Monday. https://reelrecovery.org

Jake Hannam (to Organizer(s) Only): 3:41 PM: Congrats! Have fun!

Bill Franklin (to Organizer(s) Only): 3:42 PM: Man! Rick told me about that and I looked at it but will have to plan carefully in order to get in there. I hope you have a great time!

Jake Hannam (to Organizer(s) Only): 4:29 PM: https://ancan.org/category/recorded-groups/

Jake Hannam (to Everyone): 4:29 PM: https://ancan.org/category/recorded-groups/

Jake Hannam (to Everyone): 4:30 PM: https://www.youtube.com/channel/UCOX221U27DhVDCe3Ozz2rDg

John Antonucci (Private): 4:50 PM: thanks

Jake Hannam (to Everyone): 5:10 PM: https://ancan.org/peer-advice-on-managing-your-medical-team/

Joe Gallo (to Everyone): 5:13 PM: https://www.youtube.com/watch?v=jdk3HZUEVfY

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

Special Presentation: The Current State of AS and How Active It Needs to Be

On October 6th, we had Sanoj Punnen, MD (Co-Chair of the Genitourinary Site Disease Group at the Sylvester Comprehensive Cancer Center, University of Miami, Miller School of Medicine) give a talk to our AS group titled “The Current State of Active Surveillance and How Active It Needs to Be

Dr. Punnen said MRIs are playing an increasing role in diagnosing prostate cancer. He said MRIs must be performed before biopsies to target lesions.

“Get an MRI before a biopsy”, he stressed. ”MRI more likely do a better job of finding lesions appropriate for active surveillance.”

He said genomic and genetic testing can provide reassurance that AS is a safe path for individual patients.

He said he has long preferred transperineal biopsies over the so-called “gold standard” transrectal biopsies that carry a risk of deadly and disabling sepsis.

Dr. Punnen said if the MRI “looks good,” biopsies may need to be performed every three to five years rather than the annual biopsies that used to be performed in AS.

“One protocol will not fit all. Some need intense follow-up but some don’t,” he said.

 

Watch here:

 

Slides will be posted when available. 

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.

Jennifer Digmann’s MS Diagnosis Story

Jennifer Digmann’s MS Diagnosis Story

We love Jennifer Digmann! She makes up one half of our lead MS moderators with her husband Dan. Here she shares what it was like being diagnosed with MS as a young adult, and talks about MS Rockstar Dr. Aaron Boster, who you may have seen around here at AnCan.

 

It was my senior year in college, and crazy things were happening with me. No, I don’t mean bar crawls or sorority parties, I’m remembering numbness in my hands and feet and incredible fatigue. While I probably was burning myself out studying, working and socializing, I never saw being diagnosed with multiple sclerosis in my future. But six months after graduation, I was diagnosed with that chronic, progressive disease of the central nervous system.

Hmm, MS? At 23 years old, I had other plans for my future, but the disease didn’t care. Its progression was relentless. There were three available disease modifying medications at the time—DMTs intended to slow the progression and severity of the disease—and I had no success with any of them. Time and my walking ability was going by so quickly. What was I going to do?

 

Fortunately at that time, I started hearing about a newly approved medication to treat more progressive forms of multiple sclerosis. Unfortunately, my neurologist at the time did not feel comfortable prescribing me this drug. Again, what was I going to do?

 

I was scared and frustrated, yet I knew something drastic had to happen to slow the progression of my disease. Even if that meant finding a new doctor who felt comfortable and was willing to prescribe this newly approved medication to me.

 

With my first neurologist’s blessing and referral, I began my more aggressive treatment at the University of Michigan neurology clinic. I was fortunate to find a team of fantastic doctors to treat my case. They prescribed a vibrant, electric blue infusion solution called Novantrone. While my MS did not drastically improve, it stabilized, and stability has been incredibly important to me. I am so thankful and credit those doctors with altering the course of my disease.

 

Full transparency, I am particularly fond and appreciative to the engaging young resident who was on my care team close to fifteen years ago. In those years after my Novantrone treatments, so much has happened in my life. My multiple sclerosis has stayed pretty stable, I was able to earn my graduate degree, and most importantly, I married the man of my dreams.

 

And not surprisingly, so much has happened in the life of that engaging young resident, too. Since his time at the U of M, Dr. Aaron Boster has become, well, Dr. Aaron Boster. He is a champion and a powerhouse for the multiple sclerosis community.

 

While Dr. Boster is no longer treating me, Dan and I still find value in the accessible, informative content he shares with the MS community. Dan and I were thrilled that he recently had a very thoughtful conversation with us which provided answers to our “7 Questions with a Couple” blog series.

 

For as much as Dan and I learned about Dr. Boster, we know that the AnCan MS audience would also benefit. Here is your opportunity to get to know one of our AnCan favorites: http://acoupletakesonms.com/7-questions-with-a-couple-featuring-dr-aaron-boster/

 

Enjoy!
Remembering Rodney Reese

Remembering Rodney Reese

AnCan is deeply saddened to hear about the loss of Rodney Reese, a tireless advocate for Sarcoidosis and moderator for AnCan’s Sarcoidosis group. We send our love to the family, friends, and entire community during this difficult time. In honor of Rodney, fellow moderator Frank wanted to share a little bit more about this incredible man. Thank you, Rodney! May his memory be a blessing to all.

 

I am going to preface this by saying this is one of the hardest things I ever wrote before. On Saturday we lost a great advocate but more importantly we lost an even greater man. Rodney Reese was so many things to so many people that knew him. He was a husband, father, son, brother and most important to him he was a grandfather. He always talked about his family.

For those in the Sarcoidosis Community that didn’t know him he should have touched you for the things he stood for and his actions for the Sarcoidosis Community. He was always thinking about how he could help someone or how he could make it better for those who couldn’t help themselves. Rodney always had this great presence when he walked into a room. You always knew you were with a very educated calm force. He always showed that grace, charisma, and had a charm that you were always drawn to.

Now Rodney to me was so much more. He was one of my best friends. He was my brother. We have been talking online for about ten years. We finally met physically at our first FSR Ambassador training with the original 15. We met and right away we hit it off. That is being mild about it. We were brothers right away. We talked during dinner, then some of us went to the hotel upstairs bar, we talked some more. Okay when I say some more we talked until the bartender said last call and our wives called us. We looked at our watches and saw it was after 4am. We had no idea of time. Nobody would have thought we just met for the first time. It was just that easy! But that is Rodney Reese! The next day we paid for it because we had a full day of training on maybe 2 hours of sleep. Did we care? No. We were there to meet others as well as learn.

Rodney was someone who would give me a calm feeling, as you all know I can be a bit “in your face, hothead at times.” He always knew what to say to get a smile out of me when I was going off about something. He also knew when it was time to let go as well and join me on my tirade. We worked hard and loved hard when it came to our advocating. I knew if I came up with an idea no matter how crazy or how quick I wanted to get it done. He would always say to me “I am in. You can count on me. Just tell me what you need me to do.” Every time I needed him; he was there. Even if he wasn’t feeling well, he would let me know he could do only a little bit, you could tell he felt bad about it. It didn’t matter to me if he did a lot or nothing at all, what mattered to me was that he approved. He was my mentor, that was unsaid, but I hope he knew he was. He always said, “How did I have the energy to do what I did?” He was very quick to give me a compliment. Like I said he knew how to make you feel better.

The second year there was another Ambassador who joined us, Paul Dickerson, an amazing man as well. Paul, Rodney, and I hit it off so well. People started to call us the Three Amigos. We hung out together at the training and even went out afterwards. The three of us would keep in touch. At that time, I wasn’t doing that well health wise and having those two positive people always made me smile. All three of us would call each other to see how we were doing. It wasn’t just a wellness check either, we would talk to each other for over an hour at least. But we never hung up the phone without saying “Love you brother.” Paul started that, but all three of us meant it.

In 2018, I was going through many health issues even being told I was terminal. It was those two brothers that helped me so much mentally to fight for my life.

Then in May 2018, Paul passed away. That was so hard for the two of us. Rodney and I talked that night for well over an hour. One thing we kept was “I love you brother.” You see Paul’s death hit both of us real hard. It was like losing a family member. I remember us talking about how we had to work harder to help others. We bonded even more after Paul passed, if that is possible.

We went through so much together as advocates. In August 2019, I remember calling him with another “great idea” I had. I remember saying to him” How about we start an online support group, for those patients, caregivers, and family members who couldn’t go to a face-to-face meeting or didn’t have one near them.” Once again Rodney says, “Sounds great when do we start?” Little did we know what was coming. We started the support group in November 2019. It kicked off and was amazing, still is going.

Then the pandemic hit…. In March 2020 we got hit with the pandemic. I got COVID in mid-March. Rodney and others stepped up. It was a tough time for me, but Rodney was calling checking up on me.

Then when I was getting better, something else happened…. George Floyd, Breonna Taylor, Ahmaud Arbery and others, and the protests. Well, that hit Rodney real hard, and he decided to stay away from the support group, as did others. I remember calling him and I never heard him so mad before in any of our earlier conversations. I just remember my heart went out with him. I felt so bad, and I thought there was nothing I could do to help ease his pain. I knew and felt his pain. I then made my usual quick idea, yet again. “Hey Rodney, why don’t we do a forum about Civil Justice or In-Justice? He was all for it. He jumped in as much as I did. He introduced me back with Bernie Mac Foundation, he also was able to bring on extra people on the panel. He did so much for that first forum and two after even being part of the panels and stepping in to moderate one of the forums for Mental Health and Social Justice. Not once did he want any credit for any of these forums. He put all the emphasis on me and what I did, but not once did he talk about how much he did to make sure these went off well.

You may ask why I made this dedication so long? Well, you all needed to see the Rodney I and many others like me knew.

He was an amazing man. He was a caring, loving man. He was a Brother to me!

The last time I spoke to him was the second day he went into the ICU. I am not even sure Harriet knew this. He said he had to beg and bribe the nurse to call me. He was on full oxygen, but he was still asking me how I was doing. He told me he was going to fight hard and tried to reassure me he was fighting as hard as he could. He wanted to make sure I was doing fine.

You see, that is what Rodney is and was. Always there, always caring, always Rodney! I am sad that Rodney is no longer with us. Well, that is an understatement. I am devastated. But I can hear Rodney telling me, “Come on, you know better, what is next?”

Rodney you may be gone, but you will always be with me. I know when I have the next idea you will be saying, “what do you need?” You will always be here. You will always be in my heart trying to calm me down again.

Rodney, “I Love You Brother!” I will keep the legacy of the Three Amigos going and forever trying to improve this community!