Many reading this post live with cancer … as ‘patients’ or ‘caregivers’. Well, maybe not as ‘patients’ …. perhaps you were a patient but now you’re in durable, or perhaps not so durable, ‘remission’?? So what do we call you … ?
In this day and age of politically correct language, we best be careful about the words used. Some people are pretty sanguine being described as ‘survivors’ – doesn’t bother me personally albeit others object strongly. And they feel even stronger about other aggressive nomenclature …. ‘warrior’ and ‘fighter’ can rise to the level of abhorrence.
Then there’s ‘cure’ ….. that’s a full discussion in itself. What exactly does it mean? Is cure even feasible for many touched by cancer? How does it differ from ‘remission’; and, ‘lesion’ – should we say ‘tumor’. Have I piqued your interest yet …. our presenter and co-moderator, Dr. Richard Wassersug Ph.D, has written papers on this topic and counts a good 15 or more cancer-specific words to be used ‘with caution’!
On Monday, July 29th at 8 pm Eastern, Prof. Wassersug will be joined by journalist, Howard Wolinsky, trauma interventionalist and Stage 4 Cancer patient, Dr. Jamie Aten Ph.D, and cancer researcher diagnosed with cancer, Dr. Corrie Painter, Ph.D. . Professor Wassersug makes a short presentation followed by a stimulating panel discussion and audience questions moderated by yours truly and Dr. Wassersug … you may not agree but it will certainly give you pause for thought!
Meet The Panelists
Richard Wassersug, PhDis an Honorary Professor of Cellular & Physiological Sciences at the University of British Columbia, an adjunct professor at Dalhousie University in Nova Scotia, Canada, and a psychosocial researcher. He has been treated for prostate cancer and is the lead author on the book Androgen Deprivation Therapy: An essential guide for prostate cancer patients and the loved ones. He proudly holds the Ig Nobel Prize for his important work, “On the Comparative Palatability of Some Dry-Season Tadpoles from Costa Rica”
Corrie Painter Ph.D is a cancer researcher at The Broad Institute ( MIT & Harvard), diagnosed with cancer. She is also the Associate Director of Count-Me-In, a Broad Institute initiative to create large scale genomic data bases for six different cancers (to date!), including her own angiosarcoma. It relies on samples voluntarily contributed from those living with the respective diseases. Corrie is also a mom, a runner, a patient advocate, and has never met a zebrafish she didn’t like!
Howard Wolinsky was the medical writer for the Chicago Sun-Times for 27 years. He was nominated twice for the Pulitzer Prize for his exposes of the American Medical Association. Howard taught medical writing in the graduate school at the Medill School at Northwestern University. He despises being called a survivor–an overkill term although better than “victim.” – read his MedPage Today piece from this past year here.
Zytiga in transit! – packaging in heat; radiation treatment switch; high PSA with low Gleason 3+4 Dx; joint swelling and tearing issues from chemo docetaxel; speed of testosterone return after HT; target PSA for restarting treatment on IHT; nocturia issues and fatigue; Provenge; IHT and testosterone levels
Couple of remarkable discussions this week – listen to Ken Anderson’s experience hiking 150 miles on ADT with his younger sister – watch out for a longer blog post if we can convince him to write one! And our own ‘Iron Man’, Thibeaux Lincecum, relating his miserable experience with shingles and success with Lutetium 177 PSMA …..
Content
Lupron/agonist v Firmagon/antagonist & CVD incidence; Intermittent Hormone Therapy; PSA & testosterone patterns post-ADT; 150 mile hike on ADT; Provenge & 2nd line anti-androgens concurrently; shingles; Lu177 treatment experience; combating low blood counts;Wisconsin Ginseng; weaning off opioids; Firmagon shot location; Federal Blue Cross/Shield & Zytiga; advance PCa treatment sequencing
In this prospective Phase II clinical trial enrolling 80 patients with advanced prostate cancer and pre-existing cardiovascular disease, 41 patients were assigned to Firmagon (an LHRH antagonist) and 39 were assigned to Lupron (an LHRH agonist). During the one year trial period, 20% of the men assigned to Lupron experienced a new major cardiovascular or cerebrovascular event (heart attack or stent or stroke) versus only 3% of the men receiving Firmagon.
Peter Kafka’s commentary refers to a study published last week in the JAMA Network Open; you can find it here. The topic is not new – there have been several previous studies. This Medscape article from 2016 summarizes and references several prior research articles. Note you will need to sign up to Medscape to access; it is free and worthwhile. And there are several pertinent studies amongst the references to the JAMA Network Open article if you care to chase them down.
It is very important to note that all the studies identifying this link between ADT and dementia are epidemiological based on populations of various sizes and definitions. This study only considers men over 66 between 1996-2003 followed through 2013 taken from the SEER-Medicare data base. With any epidemiological study, observations are correlative NOT causative.
Btw, it is TOTALLY fortuitous this post follows the previous one on commonly prescribed drugs and dementia; we had no advance notice that the ADT & Dementia study would be published July 5!
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If I had to chose a title for where my thoughts have been the last couple of days it would be;
BETWEEN A ROCK AND A HARD PLACE
Many of you know that I have resided in Maui, Hawaii for the past 30 years. Hawaii has some odd customs. I think that the second most popular liquid consumed here after BEER might be Roundup (joke). When I moved here, I sensed that this herbicide was not a wise choice and I decided that rather than try to beat back the jungle with chemicals, it was best to not use them and get used to my property looking a bit ragged all the time. Now with recent studies and lawsuits around the country involving this product I remain more convinced than ever that I made the right choice.
The reason that I mention the story above is that I have been receiving a number of articles that seem to be based upon studies linking the use of ADT for prostate cancer to increased risk of dementia in older men. This is not new information to many of us. And to date I don’t believe that there has been a definitive link, but there is plenty of data and research is being done on this link. Because men in the US are living longer, and various treatments particularly for more advanced prostate cancer are extending the lives of many men, it makes it difficult to draw absolute conclusions because of these and other factors.
For men in the Low and Intermediate risk category of prostate cancer this topic might not be something to even be concerned about. For those men most ADT courses if suggested at all are only 6 months or so. But for men like myself with more advanced disease and dependent upon ADT for longer periods to arrest my disease, it is a subject worth visiting. ADT in some form or another has been a standard of care for prostate cancer for quite a few years now. If it turns out that there is a link to increased risk of mental deterioration from the use of ADT how does one weigh the risk and assimilate the information? If given the choice of increased risk of dementia or increased risk of death from prostate cancer, how would you decide?
I have no answers to this dilemma. At this time very few doctors raise the concern to their patients. And some physicians feel that it should not be broached at all. And I hesitated to even bring it up in this forum. However, more studies are coming out utilizing the extensive data available over the past 30 years and it might give many of us pause to reflect.
In the spirit of an earlier post that suggests you should not believe everything you read, we are providing the research paper to this CNN report from last week on commonly prescribed drugs and the incidence of dementia. This study is typical of large epidemiological reviews of medical data bases, not necessarily explaining cause, but observing correlations. You make your own deductions ……
And just to point out, this research focuses on anticholinergic drugs alone, although the CNN piece expands it to other drug classes where there does seem to be additional clinical evidence of long standing – this is not new news!! And before you ask ……
Anticholinergic drugs range from the overactive-bladder agents and the Parkinson’s-disease agents that are known to be strongly anticholinergic, to drugs such as warfarin, furosemide (Lasix, Sanofi-Aventis), hydrochlorothiazide, and ranitidine(Zantac, GlaxoSmithKline), an antireflux drug, that have weaker anticholinergic properties
Several antidepressants, like amitryptiline also fall into this same category .. just sayin’!
On a personal note, I once tried hydrochlorothiazide to control blood pressure, but felt lousy from it so dropped the drug – otherwise I could have been on it for the past several years.
Post chemotherapy; good example of expert and local med onc cooperation; germline BRCA+ diagnosis; facial numbness; Intermittent Hormone Therapy; can nocturia explain fatigue?; treatment choice for Gleason 4+5; increasing testosterone on hormone therapy; IGRT with implanted guides vs IMRT; comparing scans
In this line of work, one of the non-pecuniary benefits is meeting remarkable people … like Jamie Aten Ph.D who I blogged about yesterday. Before we go any further, and if you are wondering what the heck ‘non-pecuniary’ means it goes back to my labor economics classes at Chicago with Sam Peltzman. ‘Pecuniary’ means related to money … and patient advocates don’t see much of that. Ironically, a significant for-profit corporate player in the field of patient advocacy whose stated mission is to help advocates find compensation, asked me yesterday to assist them with an online educational program they are compiling. When I asked if it was compensated, their response was no, however I should be satisfied with building my network and my resume from the ensuing publicity ….. OPM, I guess .. ‘other people’s money!’ But I digress ….
Back to remarkable people, especially Dr. B.J.Miller who kindly serves on our Advisory Board and boasts a TED Talk with more than 9 million views at last count! BJ is a palliative care doc at UCSF where I have had the privilege of working with him since around 2012 – I love the guy! For several men I have introduced to BJ, he has been their lifeline. You have to know BJ was a national class varsity rower (should I declare a bias here?) who was recruited by Princeton; as a sophomore, he endured a life changing injury that cost him three limbs! BJ has the remarkable knack of connecting to people challenged with life threatening disease.
BJ Miller and Shoshana Berger are publishing a book mid-July, A Beginner’s Guide to the End, and last Sunday the New York Times printed an opinion piece by them, Don’t Tell Me When I’m Going To Die …. you’ll be relieved when I say that’s the required reading rather than the book, Folks! BJ and Shoshana refer us to a very simple form called a ‘Prognosis Declaration’ developed by a man called Steve Scheier when he was caregiving his terminally ill wife. It puts YOU in charge of what you want your doc to tell you about your survival prognosis …. and if you give it to your medical team IN WRITING, they will need to abide by it. What a simple concept, but perhaps it can change how you live your life!
And my thanks to Len for blogging ‘Here’s Your Prognosis …’ otherwise I would not have noticed BJ’s opinion piece.
Our friend, Dr. Jamie Aten, is quite a remarkable gent. A psychology professor in the field of disaster relief at Wheaton College, IL, he is also lives with Stage 4 colorectal cancer; we encourage you to read his article published in the Philadelphia Inquirer. Some of you may recall, Jamie joined us for a Speaking Freely virtual session earlier this year on the vocabulary we use around cancer; you can listen to it here. He’ll be back on July 29 to join a panel on ‘The Language of Cancer’ that is open to all.
Earlier today, Jamie published another piece in Cure Today that we want to bring to your attention. It relates an experience many of you are too familiar with …. how ‘friends’ disappear when you face cancer, and other crises, then you have to evaluate whether it is worth the effort to re-engage. Know the feeling …. read it here.
Our thanks to Jamie for giving AnCan a shout out on the national stage ….. join us on July 29 to hear more from Dr. Aten!
Richard Wassersug, PhD is an Honorary Professor of Cellular & Physiological Sciences at the University of British Columbia, an adjunct professor at Dalhousie University in Nova Scotia, Canada, and a psychosocial researcher. He has been treated for prostate cancer and is the lead author on the book Androgen Deprivation Therapy: An essential guide for prostate cancer patients and the loved ones. He proudly holds the Ig Nobel Prize for his important work, “On the Comparative Palatability of Some Dry-Season Tadpoles from Costa Rica”
Corrie Painter Ph.D is a cancer researcher at The Broad Institute ( MIT & Harvard), diagnosed with cancer. She is also the Associate Director of Count-Me-In, a Broad Institute initiative to create large scale genomic data bases for six different cancers (to date!), including her own angiosarcoma. It relies on samples voluntarily contributed from those living with the respective diseases. Corrie is also a mom, a runner, a patient advocate, and has never met a zebrafish she didn’t like!
Jamie D. Aten, PhD, is founder and executive director of the Humanitarian Disaster Institute (HDI) and Blanchard Chair of Humanitarian & Disaster Leadership at Wheaton College (IL). His books include the Disaster Ministry Handbook (InterVarsity Press) and A Walking Disaster: What Katrina and Cancer Taught Me About Faith and Resilience (Templeton Press). Follow him on Twitter @drjamieaten. Jamie’s article on the Language of Cancer was published earlier this year in the Philadelphia Inquirer.
Howard Wolinsky was the medical writer for the Chicago Sun-Times for 27 years. He was nominated twice for the Pulitzer Prize for his exposes of the American Medical Association. Howard taught medical writing in the graduate school at the Medill School at Northwestern University. He despises being called a survivor–an overkill term although better than “victim.” – read his MedPage Today piece from this past year here.
