I rarely write in the first person. I make an exception today to eulogize Jake Hannam z”l (the Jewish equivalent of RIP).
Many of you will recognize Jake from the picture above, lying on his bed participating in our virtual meetings. This was largely Jake’s world – literally! I want to fill you in between the lines as to why AnCan and The Reluctant Brotherhood were Jake’s window to the world for the past 8 or 9 years. Jake was intensely agoraphobic – a fear of open spaces. He made no secret of this if you knew him, and occasionally mentioned it publicly in our virtual support groups. Jake was private but not in the least ashamed of his phobia.
For me personally Jake pesonified why I started this virtual endeavor 10 years pre-Covid. I recognized many people could not attend a real location – not only for physical or geographical reasons, but because they had a social disability … like, for example, agoraphobia.
In Jake’s case this was not recent. His wife, Paula, told me it was present when they dated and discussed having kids. She made it clear she wanted these future Hannams to visit the ocean and Disneyland; Jake made it clear those trips would need to be with just their mom. Jake was catholic – he held great relligious faith. So much so, that Jake told me on several occasions that his fear of death was subsumed by his fear of venturing outside his safe zone – and that safe zone shrunk the older he got. He preferred to stay at home on Xmas and Thanksgiving waiting for Paula to bring home leftovers, rather than take the 20 minute ride to his older son, JP’s house. His fear severely compromised Jake’s ability to seek the best treatment for his advanced disease. Because we loved Jake so, it frustrated many of us that a 40 minute drive to Johns Hopkins was never an option; he had to settle for mediocre local care.
I supported Jake from around 2013 (I think) when his cryotherapy failed. He was part of the Inspire UsTOO prostate cancer written forum, then started attending our Reluctant Brotherhood virtual telephone conference calls. Jake and I had our differences over the years. Unlike some of his AnCan brothers, I was smart enough to avoid politics, so Jake and I largely disagreed over treatment choices,and occasonally how I ran AnCan. That said, he never failed to support our effort, even updating a video introduction to AnCan as recently as early December that you can watch here.
Jake was our tech and social media guru. He figured out how to get AnCan on YouTube, Facebook and Twitter, He managed those sites for us, often posting content he sourced. Jake figured out how to record and publish our meetings; and, he was the first to volunteer to learn GoToWebinar to run our webinars. And many of our volunteers came to know Jake through being trained by him on these platforms. If you watched the screen when Mr. H was participating, his icon would go dark every so often for a minute or so. Most of us insiders knew that was Jake having a puff on one of his beloved cigarettes that he never gave up to his dying day. We all loved Jake dearly, even if it was not always kumbaya; he could be grumpy even irascible at times. Jake always discounted his own extensive knowledge about prostate cancer, and chose to be our behind the scenes moderator, making sure the meeting flowed well technically and muting any noisy interlopers..
Jake leaves his wife Paula, and JP and Phil, his two married, super smart boys with PhDs, one of whom travels the world for the World Bank. His first grandchild is expected next month. Jake was immensely proud of both of them, For details of Jake’s family, education and career, you can read his obituary here ; we thank Geoge Rovder for forwarding this to us.
AnCan and The Reluctant Brotherhood plan a joint virtual tribute to Jake Hannam on Sunday, Feb 20 at 6.00 pm Eastern. It will be on the RelBros Zoom platform not ours; we’ll publish a flyer in upcoming Reminders. Our sincere thanks to Peter Kafka and John Tesiberg for arranging this. This is my eulogy, so I doubt I wil take more time on Feb 20th.
And one last, very recent reminiscence to close that expresses a lot. I share this in Phil’s words from an email sent last Saturday, Jan 29, two days before Jake left us:
This is Phil (Jake’s younger son). Dad has been sleeping most of the day owing to the pain medication and hasn’t been able to use the computer since around Jan.14. He is declining more with each day. I offered to read his email today, and in reply to yours, he smiled and said “Onward and Upward” (the most he has said all day!).
Sincere thanks to you and my Dad’s other brothers at AnCan. We will keep you posted.
May Jake’s memory always be a blessing to us at AnCan Foundation and all who knew him.
What do oncologists have against palliative care ….?
If you regularly attend AnCan’s virtual chat support groups, you are sure to know that whatever the condition, we frequently recommend palliative care … almost anytime and place we can.
And NO – palliative care is not about dying – it’s about preserving Quality of Life. Some of the smarter institutions have figured that changing the name to an acronym like Symptom Management Service at UCSF or Supportive Care at Memorial Sloan Kettering may account for greater acceptance and higher quality. It may also explain why these two institutions are among the best in the biz. Others like City of Hope, that still keep Palliative in their name, struggle to make palliative care easily available to their patients.
A recent article in Hospice News reports that “Cancer Patients Often Not Referred to Palliative, Mental Health Care”. Amongst 240 surveyed oncologists, only 17% referred their patients to palliative care early in the disease process. Yet many studies show that the earlier a patient is referred to palliative care, the better the outcome – especially for cancer. On more than one occasion at the same NCCN hospital, AnCan has had to navigate a participant to self refer to palliative care in order to receive treatment. In one instance, this even involved the Chief Medical Oncologist.
Given the underpinning principle in medical ethics of ‘Do No Harm’, essentially embodied in the Hippocratic Oath, how can this be?
At AnCan, we have a theory, we see this as a control issue. For some oncologists, and maybe other specialties who might collaborate with palliative care too, they are uncomfortable sharing patient management with other docs in essential areas like palliating comorbidities. While palliative care physicians are required to stay up on developments in pain treatment, antiemetic (nausea) drugs, and other forms of supportive care, oncologists have their heads buried in cancer care.
AnCan is very fortunate to have Dr. BJ Miller, one of the foremost palliative care gurus in the US, on our Advisory Board. If you doubt that, BJ’s TED Talk is now up to 14.6 million views! Dr.Miller now practices his profession from his own organization, Mettle Health; his services have comforted several AnCan participants. So we thought we would ask Dr. BJ Miller for his view on an issue he has lived with for many years …..
” I think medical training is part of the problem, as is confusing messaging around what is palliative care. and i agree that a piece of the problem is related to control, and, related, misunderstandings about how palliative care works (ie, as an additional layer of support that makes the treating physician’s life easier as well as his patients’; not a service that will steal your patient away or somehow undermine your authority).
and then there’s the culture of medicine, where death is the enemy and suffering is just part of the cost of doing business; and where medical issues are taught as separate from the psychosocial and spiritual issues a patient faces.
lastly, medicine generally does not include the caregiver/family in the equation, where much of the suffering happens.” …….. Tx BJ!
Sharing patient management may not come naturally to many physicians, especially if not part of their institutional culture. At AnCan we say, let the doctor most specialized in each aspect of care take responsibility for it on behalf of the patient. When inappropriate doctors stand in the way, the patient suffers.
Of course, AnCan is a patient driven organization ….. we welcome a response from other docs to explain what we are missing!
We also learned recently that in 2021 almost 15,000 visitors have watched 258,000 minutes in viewing time on our YouTube Channel – THANK YOU!
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/
Editor’s Pick: We all know this group is for men living with advanced prostate cancer. It’s also for men lviing with advanced bladder cancer …. listen in to find out why! (rd)
Topics Discussed
PROMISE may be the ticket; advanced bladder cancer may not be so different from PCa; disease recurs after 20 years; Provenge on the Islands; dexamethasone vs prednisone with abi; dex and heart rate; nocturia and how to deal with it; Agent Orange and otehr VA issues; BAT experience; entering hospice; GU Med Onc recommends RT
Chat Log
Herb Geller (to Everyone): 4:10 PM: On a Mac, the chats are in Documents>GoToMeeting Chats
Peter Kafka (to Everyone): 4:13 PM: psma scan time
Peter Kafka (to Everyone): 4:15 PM: Oliver Sator at Tulane would be a good option.
Carl Forman (to Everyone): 4:18 PM: I had tried to get a telemed appt with Sator for a second opinion, but was told he only sees new patients in person. Didn’t want to get on a plane to see him.
John Antonucci (to Everyone): 4:20 PM: HIya Jake
Jake Hannam (to Everyone): 4:20 PM: pylarify
Alan Moskowitz (to Everyone): 4:22 PM: Could he have had C 11 Choline scan?
Joe Gallo (to Everyone): 4:27 PM: Invitae
Jake Hannam (to Everyone): 4:28 PM: I might have some input on oxycodone. I’m an old pro.
Julian Morales-Houston (to Everyone): 4:30 PM: I got the Color this week?
Bill Lewis (to Everyone): 4:34 PM: I’ve done more than 8000 self catheterizations. lewis.bill@gmail.com
AnCan – rick (to Everyone): 4:45 PM: You ain’t going to hear this type of stuff anywhere else, Gents!!!
Alan Moskowitz (to Everyone): 4:48 PM: Avoid any gas causing foods –
Mark Horn (to Everyone): 4:53 PM: Many thanks everyone
Bill Lewis (to Everyone): 5:02 PM: To Steve: my oncologist would give you a special version of Chemo, including Taxotere and 2 other drugs right away. Love to talk.
Jake Hannam (to Everyone): 5:02 PM: axumin PSMA Pet
Vic (to Everyone): 5:05 PM: from the PEACE 1 study/trial and be sure to talk with the GU MO
Erwin Zoch (to Everyone): 5:10 PM: I suggest that unfamiliar acronyms be defined when 1st used for newcomers e.g,, SBRT is Stereotactic Body Radiation Therapy (or RadioTherapy).
Bob Smith (to Everyone): 5:12 PM: Regarding Steve’s comment on head bump, is it common for concussions to lead to PCa brain or other?
Herb Geller (to Everyone): 5:13 PM: I have not seen any suggestion that a concussion can promote a PC metastasis
Peter Kafka (to Everyone): 5:13 PM: I have never heard of incidents like this leading to cancer metastasis. But I am no expert.
AnCan – rick (to Everyone): 5:16 PM: Bob – not sure there is any correlation that I have heard of.PCa spreads without any interference from outside forces – unfortunately.
Steve Barber (to Everyone): 5:22 PM: My imaginatve, “pet” theory is that 35 years of cell phone use/radiation conpromised the integrity of bone in my skull on the right side.
Vic (to Everyone): 5:24 PM: what study supports the abi with meals?
Jake Hannam (to Organizer(s) Only): 5:30 PM: bone scans are notoriously insensitive
AnCan – rick (to Everyone): 5:31 PM: Vic – we have articles around abi with food. But only re. reducing the dose with food.
Jim Marshall, Alexandria, VA (to Everyone): 5:41 PM: Jiimmy – Count your blessings you ARE. Think of what happens if you are not. Jim Marshall
Joel Blanchette, Reston VA (to Everyone): 5:41 PM: I am on the exact schedule as Jimmy and Herb.
Julian Morales-Houston (to Everyone): 5:42 PM: This is my schedule to a T!
Stan Friedman (to Everyone): 5:43 PM: I have obstructive sleep apnea and the therapy reduces the number of times I get up to one, maybe two.
Vic (to Everyone): 5:44 PM: I’ve had some success just ignoring the urge to go an being able to fall back to sleep without leaking
AnCan – rick (to Everyone): 5:44 PM: Myrbetriq
Bill Lewis (to Everyone): 5:47 PM: Food added to full-dose Zytiga: PMID 25777155; DOI: 10.1038/pcan.2015.7 — Bill Lewis
Steve Barber (to Everyone): 5:47 PM: Thanks to all! At this time I must get off the meeting. I look forward to another visit and appreciate all the input today. Steve
AnCan – rick (to Bill Lewis): 5:49 PM: Tx Bill – we will definitely take a look at the refernce. I am sure Len and Herb are on it.
Len Sierra (to Organizer(s) Only): 5:51 PM: I just did. 2015 study with 41 patients. They claim 16% better response on food with full dose. No increase in tox. Hard to believe.
Len Sierra (to Organizer(s) Only): 5:53 PM: I’d need to read the full paper. And see if anyone was citing this study.
Herb Geller (Private): 5:53 PM: IT is a small retrospective study from 2015, They say that abi with food lowered T, so there must have been an issue with their initial therapy.
AnCan – rick (to Organizer(s) Only): 5:53 PM: Maybe you can look closer ….. But even so, changing dose like that must inc. medical advice. Did these men fail abi then up the dose.
Herb Geller (to Organizer(s) Only): 5:54 PM: T is a small retrospective study from 2015, They say that abi with food lowered T, so there must have been an issue with their initial therapy. It is totally flawed
Peter Kafka (to Everyone): 5:55 PM: Don’t forget the water quality at Fort Bragg
Jake Hannam (to Everyone): 5:57 PM: Military water quality is notoriously bad and still being EPA-remediated across the country
Herb Geller (to Everyone): 5:59 PM: I looked at the abstract of the study. Thay say that abi with food caused a decline in T levels as well as PSA in a small percent of men. The fact that T declined suggests they were undertreated before switching to food. T should be undetectable with any effective dose of abi
Joe Gallo (to Everyone): 6:01 PM: Veterans Population ~19,000,000
Veterans in VHA System ~9,000,000
Veterans in VHA with Prostate Cancer 488,984
Veterans in VHA with Metastatic Prostate Cancer 16,282
Veterans diagnosed with Prostate Cancer each year ~15,000
Cumulative (10year) Cost of High Risk PCa Patient2
~$200,000
Total Economic Burden for High-Risk Patients in VHA ~$3,256,400,000
Vic (to Everyone): 6:02 PM: Is a vet rep needed for St. Louis, MO.? If so, who should be contacted?
Joe Gallo (to Everyone): 6:03 PM: Vic and anyone interested let me know and I will forward the info. joeg@rickd13.sg-host.com
Vic (to Everyone): 6:04 PM: please do Joe, thanks
Vic (to Everyone): 6:14 PM: the nasa astronauts used a penis prosthesis for urinating, perhaps that would be available and helpful for you Jake
Erwin Zoch (to Everyone): 6:15 PM: Thanks to all of you for this amazing information! Thanks to Jay for encouraging me to join this group. I hope to be with you again soon.
Jay Mills (to Everyone): 6:16 PM: Best of luck tomorrow Erwin with your appointment.
Peter Monaco (to Organizer(s) Only): 6:18 PM: Need to sign off gents! I will handle all recordings this week. Best regards and Happy New Year!
Jake Hannam (to Organizer(s) Only): 6:19 PM: you too peter and thanks for your help
We also learned recently that in 2021 almost 15,000 visitors have watched 258,000 minutes in viewing time on our YouTube Channel – THANK YOU!
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/
Editor’s Pick:This week, it’s a theme – men who are clearly their own best advocate and men who just ain’t….. and don’t let a handful of difficult customers deter you (rd)
Topics Discussed
Foundation Medicine’s Next Generation Sequencing liquid biopsy ; ‘Be You Own Best Advocate; looking to bike like Dad for another 30 yrs ….at 59 ; get best information to make intial treatment decision; everone else responsible for this man’s PCa except him; when to intorduce 2nd line anti-androgen and which one; and more … abi vs enz; finishing salvage RT; let’s talk about soy; explaining RT ligands/radionuclides; yup – that pain in the neck is PCa; cabazitaxel – hopefully the plateau before the drop; holding the course with pembro despite no result; blood pressure issues; Lu177 PSMA’s a winner for this v. grateful man; palliative care, hospice or what?
Chat Log
Joe Gallo (Private): 6:08 PM: What about SelectMDx?
AnCan – rick (to Joe Gallo): 6:09 PM: ???? – explain Joe
Joe Gallo (Private): 6:11 PM: Urine based test that confirmed the probability that I had greater than Gleason 7. Proceeded to TP. A favorite of E David Crawford
ALFRED LATIMER (Private): 6:12 PM: Rick. I forget. Who does the liquid biosy?
Jake Hannam (to Everyone): 6:13 PM: ty carl – i do have a brief update but no news
Joe Gallo (Private): 6:13 PM: Measures 2 mRNA cancer related biomarkers
AnCan – rick (to ALFRED LATIMER): 6:14 PM: Foundation Medicine
AnCan – rick (to Organizer(s) Only): 6:19 PM: He is high risk with PSA 22 but borderline
Jimmy Greenfield (Private): 6:19 PM: Thirty years! I like his optimism
Len Sierra (to Everyone): 6:19 PM: Crude incidence of individual secondary cancers ranged from 0.2% to 2.3% for patients treated with external beam radiotherapy, 0.1% to 2.1% for patients treated with brachytherapy, 0.2% to 1.7% for patients treated with brachytherapy and external beam boost, and 0.3% to 2.3% for patients not exposed to radiotherapy BMJ. 2016; 352: i851. Second malignancies after radiotherapy for prostate cancer: systematic review and meta-analysis
Warren in Edmonton (to Everyone): 6:24 PM: If Len would like to chat with me after the meeting please let me know, I can offer a great deal of information on his question
Peter Kafka (to Organizer(s) Only): 6:24 PM: He should get a second opinion on his biopsy with this one
Joe Gallo (to Everyone): 6:26 PM: Epstein Consult https://hopkinsconsults.org Eric. Just ask you urologist to send. You don’t have to track down your slides
Eric Madison, WI. (to Everyone): 6:35 PM: Have a great night, guys!
Joe Gallo (to Organizer(s) Only): 6:35 PM: He will get a good discussion when he chats with Epstein
Pat Martin (to Everyone): 6:36 PM: I was dxed and had at least 6 weeks before sugery. They gave me casodex and Lupron
Joe Gallo (to Everyone): 6:42 PM: joeg@rickd13.sg-host.com
Warren in Edmonton (to Everyone): 7:24 PM: I have a small emergency at home and I must leave the meeting. Merry Christmas to all.
Len Sierra (to Everyone): 7:45 PM: Soy might lower the risk of other cancers
Studies among prostate cancer survivors indicate that eating soy foods may lower PSA levels. Among men in various stages of prostate cancer, those who consumed soy milk or isolated soy isoflavones saw their PSA levels rise at a slower rate. Source for my post: www.nutritionfacts.org
Alan Moskowitz (to Everyone): 7:48 PM: Regarding Enza vs Abi – my MO at MSK said “As for abi vs enzalutamide, as we discussed, never been compared head to head though my feeling is enzalutamide is a bit more active. Though they work differently, both have very high response rates up front but much lower when the other has already been used. In “switching” trials, enza has higher response rate after abi than abi after enza. To me, this doesn’t mean starting with abi is better. It’s just consistent with enza being the more active drug (easier to become abi resistant than enza resistant). But overall, it’s a tossup and I give abi to more elderly and frail and enza to younger and healthier. Essentially no difference between enzalutamide and apalutamide.”
Alan Moskowitz (to Everyone): 7:49 PM: I have to leave, thanks for the guidance.
AnCan – rick (to Everyone): 7:49 PM: Alan – this NOT about head-to-head; it’s about sequencing
John Antonucci (to Everyone): 8:02 PM: will they give a 2nd booster?
Len Sierra (to Everyone): 8:04 PM: They will give a second booster to immunocompromised folks.
Cal Van Zee (to Everyone): 8:12 PM: My blood pressure peaked at 200/100 on prednisone on 50mg Losartan w/o diruetic. After changing to dexamethasone, BP dropped to normal and I stopped Losartan.
Cal Van Zee (to Everyone): 8:17 PM: 120/80 or below: for me it was the Prednisone, not the AbiI’m still on Abi now but my PSA is rising now at 19. Most likely starting chemo first week of Jan
Jerry Pelfrey (to Everyone): 8:19 PM: Sorry I have to leave. Have a Great Christmas!
Julian Morales-Houston (to Everyone): 8:24 PM: Merry Christmas to all!
Stan Friedman (to Everyone): 8:24 PM: Merry Christmas!
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
On June 23rd, we had the pleasure of having Stephanie Weisman!
Stephanie is Artistic Director and Founder of The Marsh, and has been personally touched by her own and loved ones’ cancer experiences.
June’s Solo Arts Heal was the grand premiere of “Stephanie’s Tidbits on Living While Maybe Dying“. This solo performance short is focused on Cancer Victim/Survivor PTSD (post-traumatic stress disorder). It explores what recovery means when the outlook is unpredictable, And how one copes, both at survival and creative levels, with the stress of cancer, its treatment and moving beyond.
Watch this incredible performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
I rarely write in the first person. I make an exception today to eulogize Jake Hannam z”l (the Jewish equivalent of RIP).
