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
https://www.inquirer.com/health/expert-opinions/amid-coronavirus-stay-at-home-order-healthy-people-are-learning-ways-sick-opinion-20200326.html
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.
Onward & upwards, rd
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)
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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
Chat Log
AnCan Barniskis Room (to Everyone): 4:22 PM: https://smile.amazon.com/Androgen-Deprivation-Therapy-Essential-Prostate/dp/1936303663/ref=smi_www_rco2_go_smi_g8217842112?_encoding=UTF8&%2AVersion%2A=1&%2Aentries%2A=0&ie=UTF8
Len (to Everyone): 4:24 PM: Another website that Wassersug is involved with is LifeOnADT.com
AnCan Barniskis Room (to Everyone): 5:12 PM: Nubeqa … darolutamide
Some of you are quite familiar with our Advisory Board member Richard Wassersug, an internationally recognized expert on androgen deprivation therapy in men. Richard is a research psychologist, and last year we connected him with Peggy Miller at the Male Breast Cancer Coaliton who moderates our Men’s Breast Cancer virtual group. They and others are pursuing a study on how male BCa patients respond to the word ‘survivor’. In Richard’s words:
(Peggy), I and others are collaborating on a survey study right now about how male breast cancer patients respond to the label “survivor”. As you may know, female breast cancer patients overall like that label. In contrast, prostate cancer patients typically do not. We hope to finding out whether this difference is due to a differences in how the two diseases progression and how they are treated, or instead reflect a fundamental sex/gender difference.
We’ve already collected data on about 70 male breast cancer patients, but we hope to double that.
Richard published an essay in Quilette late last month on male breast cancer “Masculinity, Emasculation, and Breast Cancer in Men”…. you’ll find it here. If you are not too familiar with this condition, it has every right to be considered a rare disease based on the number it afflicts ….. although, as Richard points out, male BCa kills more than testicular cancer! Read and learn ….
The NYC chapter for UsToo has cancelled on-site meetings and is inaugurating an online and dial-in event, accessible via computer, smartphone or telephone dial-in. If interested, please see their instructions below from the UsToo Steering Cmte. The mtg is scheduled to start at 6pm, Eastern, this Thursday, March 19.
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PROGRAM: Waiting for the Other Shoe to Drop: Anxiety and Prostate Cancer
Guy Maytal, MD
Chief of Integrated Care and Psychiatric Oncology, Assistant Professor of Clinical Psychiatry, Weill Cornell Medicine
How to access the meeting:
You can access our March meeting several ways. The best way to hear the program and see the presenter’s slides is to go online from your computer (if you have Chrome that is the best browser to use for this).
First click on the following link:
https://zoom.us/j/498180826?pwd=eDlGbjJOUE82VmRabE5STitSb0hMUT09
If you are a first time user of Zoom you may get to a page that says “Launching” but nothing seems to happen. If so, there should be a “click here” link if nothing further happens. Once you click on this you should be given a choice to run the application from your browser (Chrome works best). When you do that you should get a screen with the password filled in and asking for your name. Fill in your name and click JOIN to enter the conference.
Once you are in, there will be another prompt to join audio by computer or telephone. If you choose computer audio and it doesn’t work, look for the microphone icon on the lower left and to the arrow to the right of it. Click the up arrow and choose “audio options” and then select the “phone call” option and follow instructions. If that doesn’t work leave the meeting and re-join the meeting using telephone for audio. As long as you are on by computer you will see the speaker slides.
If you have a smartphone you can also access the conference by downloading the Zoom app and clicking on the link above.
If you cannot use your computer or smartphone to access the conference, you can participate via straight dial in with this number: 1 646 558 8656 and be able to at least hear the presentation. The meeting ID is 498 180 826
The bottom of the screen has buttons to mute your audio or turn off your video, as well as chat with the group. To see all buttons you may have to click on the more button.