Editor’s Note: We mourn the loss of Dan Louie, who we have supported since 2014.
Pick of the Week: Is there an immunologic/abscopal systemic benefit from radiation therapy?
Topics Discussed
Recent RRP finds local metastasis – follow up?; deferring appointments during Covid19; monitoring testosterone levels on hormone therapy; completing SBRT to prostate and oligometastaic spots; exercise and treatment duting Covid19; abscopal/immuno systemic response from radiation therapy; Covid19 problems on Maui; Dan Louie
Chat Log
Jake (to Organizer(s) Only): 5:31 PM: did he say he is metastatic?
AnCan – Rick (to Jake): 5:42 PM: yup – one lymph node; local Mx
AnCan – Rick (to Everyone): 5:45 PM: RADICAL trial shows adjuvant may be inferior to salvage https://www.ascopost.com/issues/october-25-2019/studies-suggest-early-salvage-radiotherapy-may-be-preferable-to-adjuvant-radiotherapy-after-prostatectomy/
AnCan – Rick (to Everyone): 5:48 PM: RADICALS-RT trial
AnCan – Rick (to Everyone): 6:19 PM: Peter – we care and love you xoxox
AnCan – Rick (to Len): 6:26 PM: Let’s make Carl a guinea pig for MyVictory
Editor’s Note: Some of our AnCan prostate cancer community have alrady seen this message, but we felt it was important enough to broad- rather than just narrowcast!
AnCan has recently noted a couple of examples where involving more rather than fewer doctors can be benifit the patient. However, doctors, advocates and others may disagree. Since AnCan believes that YOU, the patient, are your best advocate, we’ll leave it to you to decide.
The first example involves palliative care …. and NO, palliative care is NOT hospice. Listen to this 2′ video from Dr. Elizabeth Loggers at Seattle Cancer Care Alliance, one of the best cancer treatment facilities in the country …. she explains it much better than we ever could! Nonetheless, there is a reluctance by some medical oncologists to involve the palliative care service for their patients … even at a late stage. While some med oncs welcome the involvement of palliative care, others see them as meddling. We have seen examples to support this with different cancers and in different NCCN institutions, including those with the best palliative care services in the USA.
This concerns us greatly, because while the med oncs have expertise in addressing your cancer, they may not be experts in, and on top of, all the developments in pain and side effect management – like nausea, fatigue and more. And that’s why in some hospitals, Palliative Care is called ‘Symptom Management’ – for example Seattle Cancer Care and UCSF. It is not just a euphemism to dispel the association with hospice; it truly describes what the palliative specialty does. Some palliative websites boldy invite all cancer patients, no matter the stage, to consult with them! A further benefit to adding a palliative care doc to your team is the value of having a readily available quick and dirty second opinion on treatments your med onc prescribes. Perhaps this is the source of concern for your medical oncologist, but frankly they need to get over it and work collaboratively with your paliiative care doctor.
Those who follow AnCan well know AnCan pushes involving a palliative physician early in the treatment path for a multiple of reasons. And we proudly boast having one of the best palliative care doctors in America on our Advisory Board, Dr. B.J. Miller. For most NCCN/NCI institutions you do not need a referral – just make your own appointment. First try your quarterback doctor, but if they seem reluctant then advocate for yourself, force the issue and go direct.
The second example this week may apply more to prostate cancer than other oncological disorders, although maybe not! In most cases the diagnosis of cancer immediately involves a medical oncologist. For a few cancers, like prostate, a GU med onc (genitourinary medical oncologist for those unfamiliar with the vernacular!) may not get involved until the disease has clearly metastasized; we see that as a mistake that does not serve the patient’s best interest. AnCan believes a GU med onc, and in fact any specialty med onc, should be included as soon as the treatment plan includes a systemic protocol. And why – because surgeons and radiation oncologistst are not trained in internal medicine and systemic treatment – that is to say any treatment that impacts the whole body like chemo- or hormone therapy. That requires expert knowledge of internal medicine. Whle some may argue that med oncs only muddy the waters early in treatment, we disagree.
Make sure you’ve signed up for our upcoming Connect Education Workshops! These free workshops provide the latest cancer information straight from leading experts, via phone or online. At the end of the workshop, you’ll have a chance to ask the experts your own questions.
Editor’s Pick: Low dose abiraterone with food succeeds with reduced side effect profile for this participant!
Topics Discussed
Covid19 and Cancer Testing; Low dose Zytiga with food succeeds; tribute to Jim St.James; Covid19 and Cancer Treatment/chemo; SBRT to oligometastatic bone lesions & prostate gland; bisphosphonate side effects; sucessful RP treatment
Like other cancer advocates, we have heard many questions over the last month or so about the urgency of treatment in these surreal times of self-quarantine. This is especially relevant if the treatment is for someone whose immunology is already compromised – by chemotherapy, other systemic treatment, or possibly even radiaiton that can stress the white blood cells in some instances.
AnCan’s position, by and large, is don’t take unnecessary risks! Many treatments can be safely postponed …. and if considered elective, may be deferred automatically; for example, biopsies, especailly in a monitoring rather than a discovery function, and other elective surgeries. This is also true for many scanning procedures. Some drugs have long half lives, so if, for example you are receivng hormone thereapy or bone strengtheners and have been on them for a while, speak to your medical team whether you can skip a planned maintenance appointment.
And if in the midst of chemotherapy or immunotherapy, huddle with your medical team. Anecdotally, one of our board members, who is 2 treatments into a 6 treatment cycle, was advised by his medical oncologist to defer his infusion today .. so be sure to ask befere showing up for a scheduled appointment. You well know, especially if a blood cancer patient, that your immune system is already compromised so don’t place it under threat if you can avoid that.
ASCO is continuously updating guidelines for all types of cancer treatment here.
What about those of you about to start, or may even be in the course of radiation therapy … what to do? Our Advisory Board member, Allen Edel, recently reviewed guidelines from ASTRO for prostate cancer radiation that he wrote about on his own blog, Prostate Cancer News Reviews and Views. The bottom line for most every situation except palliative radiation for advanced disease, is that treatment should be deferred. And if you are in the midst of treatment, you probably already know that a short deferment is fine, but a longer break can impact the effectiveness of the total cycle. Whatever your cancer, be sure to consult with your radiation oncologist to discuss whether your radiation tretment can be delayed beyond the crisis … why take the risk if you can safely avoid it.
Another big meeting – 27 with several new folks …. rd
Editors Pick – right at the back end, you’ll hear some outstanding news from one of our regulars with a BRCA2 mutation!
Topics Discussed:
Treating advanced neuroendocrine PCa; after 8 years, is IHT an option?; warding off the Black Dog; adverse post-RP diagnosis for 50 yr old; Procrit during chemo; what PSA level to start HT on biochemical recurrence; gynecomastia; dealing with hot flashes; is COVID19 an immuno-stimulant?; BRCA2 success with PARP-I
Chat Window Links
Paul Freda (to Everyone): 5:55 PM: Ben Tran comes up in Google Melbourne as an oncologist. JFYI.
Joel Blanchette (Private): 6:25 PM: As far as I have been told by a guy waiting to get into a PSMA PET Scan at NIH, that they have paused the clinical trials at NIH due to the Coronavirus.
Allen (to Everyone): 6:30 PM: This is Carbone’s study of hypofractionated salvage radiation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3064951/
Jess5 (to Everyone): 6:31 PM: Thank you everyone. And positive vibes for you. 👊🏼💙
Allen (to Everyone): 6:53 PM: Tamoxifen vs Chest Radiation https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(05)70103-0/fulltext
Allen (to Everyone): 7:08 PM: Acupuncture for hot flashes https://www.redjournal.org/article/S0360-3016(10)00124-0/fulltext
Our good friend John Novack is responsible for Patient Engagement and Communications at Inspire ….. there are a few ‘Head’, and Senior VP’s sprinkled in their too! John often sources great articles and writers for major publications , one of which is The Philadelphia Inquirer, He has directed our moderator, Renata Louwers, their way.
This latest Opinion piece that appeared last Thursday struck a big chord with me … and I hope it will with you too, especially if you have lived with serious illness that has compromised your immune sytem and limited your movement.
There are so many great sources of highly quality information that we at AnCan do not need to contribute to the overload. But when we see a good article we will bring it to you, especially if it pertains to any of our groups. So here are two that fall into that category.
The first follows up on a queston raised in our Advanced Prostate Cancer Group on Tuesday, when a particpant asked whether he could delay treatment … in particular androgen deprivation and bone strengthening shots. And the week before we had a discussion about hospital visits at this time of virulent crisis. This article from The Washington Post reports on how the Covid19 is effecting several different cancer patients including one advanced prostate cancer patient enrolled in a clinical trial, who has adjusted his treatment.
The second link is to a CURE Talks interview with Dr. Stephen Pergam, Fred Hutchinson Cancer Center, University of Washington and several multiple myeloma patient advocates on the interesection of Covid19 and MM/blood cancers. You can listen to it here .
For us at AnCan, we have definitle seen an upswing in attendance to our meetings. In response we have added two sessions, and two new meetings for blood cancers, and for ovarian cancer.
Some of you already know one of the most remarkable members of our Advisory Board, palliative care doc, B.J.Miller. If you don’t, then listen to his TED Talk along with 10.5 million others!!! We are all getting ample Covid19 e-mail …. but if you got a missive directly from Bill Gates, I bet you’d read it.
Well today I received an e-mail from my buddy, B.J.s institute, The Center for Living and Dying. It contained his thoughts on the surreal crisis we all find ourselves in – and for me it truly struck a chord. To put it in my Marxian (Brothers) terms … are you a man or a mouse??? Read B.J”s thoughts and reflect – btw, it was mailed off-center .. and personally I think that is just perfect!!
And in case you didn’t get my allegory, Bj’s thoughts fall into the same category as Bill Gates – at least for me! (rd)
dear folks,
here we are, struggling and about to struggle more. i hesitate to add to the pile of missives flying around the ether, but i do want to shout hello and maybe sound a subtler note with a few reminders.
remember that, if we are in-tune and honest with ourselves, every one of us already knows vulnerability. we may have hidden it away or covered it over with self-assuredness or fortune, etcetera, but underneath our colorful coats has always been a sensitive, naked, tender, affectable critter. anyone who’s been ill or injured or disabled, loves someone who has, or is simply a sensitive soul, knows this feeling well where nothing may be taken for granted. the ground beneath us has never been as solid as we like to think it is. in other words, on some base level, we are not in wholly foreign terrain.but this time, our covers are being pulled collectively and simultaneously. that may be terrifying, and it’s also cause for hope. us versus them doesn’t make sense anymore, if it ever did. now, finally, we get to share the big common reality out in the open. we may be removed from one another, but we have never been less alone.
our humanity is being summoned, which means we will be seeing our real power. it’s soft and immense and adaptive and willing to get messy. we will also see ugliness and selfishness, in ourselves and others, but I bet the farm our gnarls will be overwhelmed by our beauty. though the cost will be hard to bear, we are about to learn so much. it’s a matter of survival now, not in the abstract, and that’s when we humans get serious and come together.
we are all being reacquainted with life’s basics and the awesome power of nature, including human nature. this goes for ourselves as well as for the systems we’ve invented – healthcare, government, economic. all are being tested now, and so all have a shot at evolving.
it’s also worth reminding each other that “social distancing” – usually a problem and now the solution – only pertains to physical isolation. we can still love each other. we must. we can still communicate over the airwaves. we can still mean well by each other. however you do it, keep ‘touch’ alive. losing touch can result in losing empathy, and that would be one sure way to make a bad situation worse. instead, let the longing build; it will help stave off loneliness and nihilism, and it will keep us feeling. those of us who have experienced compassion, whether coming from us or towards us, know that it’s always there. it just needs to be called-up and exercised. it needs an excuse to show itself, and suffering provides that excuse. one day, we’ll be able to directly share all that affection again, and you can bet it will be with heightened appreciation and passion.
from years of working with people who are dealing with the unimaginables of life, i can safely state that people are stronger than they tend to realize. we are. maybe it’s more accurate to say we are differently strong from the conventional, muscle-bound notions of strength. this bigger and suppler sleepy inner strength just needs a reason to flex. and here we are.
Close to a record number of attendees tonight – 27 is the largest since we went to weekly groups! Thanks everyone ….. rd
Editor’s Pick – the Covid19 virus may force you to delay appointments for repeat treatments – we discuss half-lives of drugs you are taking.
Topics discussed
monitoring post-salvage treatment; IHT for high volume PCa; using a GU med onc; addressing erectile dysfunction; radiation at Mayo, Phoenix; failure to prescribe buffer starting ADT; half life of LHRH and bone strengtheners; salvage cryotherapy to pre-treated spot lesion; NGS tumor sequencing in Canada
