Does cancer treatment compromise your hearing? …… as peer navigators, some of us have been asked that question. I certainly have by my good buddy Dennis and others who attend our group.
While doing a little due diligence for our upcoming The Language of Cancer webinar next Monday, July 29, I ran across an excellent article by Dr. Jane Biehl Ph.D. published on the Cure Today website titled “Cancer Survivors: What’s In A Word?” – worth a read, especially if you plan to attend the webinar! When I reached out to Jane to invite her to join our panel, I learnt that her hearing disability would make it very hard to participate in real time since we do not have technology to close caption.
I also learnt that Dr. Biehl has written on the ototoxic effects of cancer therapy … ototoxic literally means ‘poison to the ears’ as you will learn below. Since I knew this was a topic that interests many yet is rarely discussed, I asked Jane if we could publish her article on our blog with an accompanying introduction from her. AnCan is very grateful that she agreed – thank you Jane.
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I just wanted to let you know how the articles on hearing loss evolved.
I taught Deaf Culture for a number of years and would include a section on ototoxic drugs which literally means “poison to the ears.” I had a list of medicines that caused problems. Chemo is traditionally a big one. I would say to the students that it is better to be deaf than dead, but if there was another chemo that would work to talk to your doctor about it.
Then I was diagnosed with the MDS (Myelodysplastic Syndrome). I was told by University of Case Western Hospital that the medication Revlimid was a game changer, and without this drug I would have been dead ten years ago. It was a fairly new drug. It was oral and I made the mistake of thinking it would not cause the same problems as an IV. It caused several unanticipated side effects including chronic diarrhea, extreme fatigue, and hearing loss.
I was on it for nearly 6 years.
I started to realize that I was missing more and more conversations. When I saw my audiogram I just gasped. It had dropped 25 decibels from severe to profound!
I should mention that this would not happen to everyone. First of all I was already hard of hearing. Second of all I have been on the medication Revlimid longer than most people and have lived longer which is a good thing! I did notify the FDA hoping to have them warn people in their literature.
I then went on more powerful Vidaza shots; and at that time went to the James Center at Ohio State University. They told me they never heard of Revlimid causing hearing loss, but Vidaza did. I had to go on the Vidaza because I was going into leukemia, which is almost always fatal when preceded by MDS. I was on the shots for 2 years until I suffered a rebound effect and was forced to stop. Presently I am on Procrit and Zarxio shots to keep my red and white blood cells count up.
I am now under the care of a wonderful local oncologist plus a specialist at the Cleveland Clinic. He never heard of Revlimid causing hearing loss and there was nothing in the literature. But then I researched further, and it is a derivative of Thalidomide which – guess what – is known to cause hearing loss.
There is some speculation that I may need to go on a future medication for MDS called Luspatercept to be approved in April of 2020 by the FDA. I am of course concerned that this may demolish the rest of my hearing – what little I have left – but I have no choice.
I wrote this article to help other people.In addition to this article published by Hearing Life which is published by the Hearing Loss Association of America, I have written another article. This one is about the impact of losing more hearing and how the world keeps getting smaller and smaller and is to be published in the next year. Interestingly enough, the editor is trying to find an audiologist who is familiar with ototoxic medications and is unable to do so because there is so little on this topic.
After sending out a reminder today for the virtual group I co-moderate that cited Ken Anderson’s inspiration, Peter Kafka followed up a few hours later with more inspiration for his own group reminder…..
The one obvious commonality of all prostate cancer patients is that we are all males/men. Beyond that it is hard to generalize about us but in my work with men in our situation I have observed a few tendencies and perhaps it is best to speak of my own experience and see if it connects with some of you.
Last winter the roof on my home failed due to the inordinate amount of rain. I hired a roofer/contractor who ended up being something of a deadbeat. I ended up picking up quite a bit of the slack which involved hauling away all the spent asphalt shingles in my 20-year old pickup truck to the landfill. Since our last meeting on July 8th I have loaded my truck some 9 or 10 times with heavy shingles and then unloaded the same at the dump. My son helped out when he could after work, but I pretty much took this on as my project.
For most of this week my body suffered from the extra exertion of this exercise. I know that I have a tendency to “push” myself to my physical limits, more so when there is a job to be done than at the gym. Is this a good trait or a bad trait? I don’t know, but it is not an uncommon trait amongst men. When I was a young boy working with and for my dad and often carrying heavy loads on my back, I remember some of the women in the plant telling me to “save my back”. I always wondered what I would be saving it for. In reflection, I think that the exercise and “pushing” I did as a young boy probably had a lot to do with gifting me with a strong back to this day.
If you are like me, none of us are going to “give up” due to this speed bump in the road called prostate cancer. Yes, it can slow me down a bit and sometimes cause me to make some radical adjustments in my life course, but it is not going to stop me. Is this the voice of arrogance or defiance speaking, or is it just a voice of common sense? We all know our limits, we are all smart enough to ask for help when needed but most importantly, we have a job to finish.
Ken Anderson is 58 …. he was diagnosed with de novo metastatic prostate cancer two years ago and has endured chemotherapy, radiation and been on androgen deprivation therapy since February of 2017. One of Ken’s goals has been to maintain as close to a normal life as possible .. and that includes lots of regular hiking and biking in his home city of Phoenix. A native of the Northwest, Ken had long wanted to complete this 15-day Washington State hike and was NOT going to let an absence of testosterone stop him …….
Ken has participated in AnCan’s weekly Advanced Prostate Cancer group since diagnosis. He has also mentored several other younger men initially diagnosed with metastatic prostate cancer; we are very proud of him ….. !! If you would like to follow up with Ken on his experience, please reach out to us at info@ancan.org and we will make the connection.
Ken & Sister at Hearts Lake above tree line (day 9) –
Living the best possible life while dealing with the side effects of ADT – this is true when told you have advanced prostate cancer and that you will need to stay on some form of testosterone lowering drug for the rest of your life to prevent the cancer from spreading and to slow its progression.
Most men ask – what is that going to look like? For me the loss of testosterone was something you just cannot get your head around. The loss of muscle mass and general fatigue come to mind. Living with cancer has changed how I approach each day! Long term plans become six months or less. We all need to clear our minds and try hard to “Live in the moment”!
The Hike…
Moving along the Coast to Rialto Beach (Day 4)
First let it be known that this hike was one I had planned on doing alone. I started thinking about it around the end of this past year, 2018. Knowing full well that building muscle and endurance was going to be an issue while having no testosterone levels. Without question the love of the outdoors and hiking was going to help push me along. Approximately 150 miles was planned with two segments (a coastal area and then an area of rain forest and above the tree line); the first part being 38 miles along the coast and the second 107 miles from the Hoh Rainforest trailhead to my uncle’s home in Brinnon, Washington.
I cannot remember when my little sister asked if she could go along but I remember thinking, “She has no idea what a yes reply might mean”. After all she had never hiked or camped for any period of time and for sure never carried 45 pounds of camping gear and food plus a bear canister on her back for 12 days. I was concerned but said yes, knowing full well that she would need to start training and get some good gear.
The fact that she wanted to go was beautiful but it did change how I would approach the hike. Getting ready for the hike became the mission and planning …… well let us just say I wanted to provide a couple of outs in case of bad weather or a change of mind. As the months passed and we were close to the departure date it became clear that she was taking the hike serious with training and gear acquisition. In my head I was thinking she may just hike my butt into the ground and for this reason I too started to train like crazy. The fact that my little sister was making such great efforts forced me to step up my own game and get myself in shape.
Let it be known that getting up off your butt and pushing yourself to extremes is still possible for anyone on ADT.Live in the moment and work hard to live as full a life as possible.
Hoh Rainforest (day 7)
The Hoh Rainforest is amazing… it is an easy hike and can be done by anyone. Located just a short drive from Forks, Washington in the northwest corner of the state, it is relatively flat; it has the most amazing green moss covered trees with ferns and grasses that appear from a distance to be a soft and inviting blanket. For sure it was the most pleasant hiking part of our trip with ideal camping locations along the Hoh river and great fishing. Along the trail we were able to spot small herds of elk, and deer in the early morning around our campsites plus beautiful views of Mt Olympus off in the distance when the thick pacific mist lifted.
Mt Olympus (day 9)
After the relative ease of hiking in the rain forest with wide open gravel walkways designed to allow for 100’s of day hikers, we started the more difficult part of the trip. Our first day – 4850 feet up the mountain in just five miles, and then another 4 miles along some of the narrow passages of the Seven Lakes area. This part of the trip was a challenge. It’s truly a difficult hike and one that requires your complete attention. A missed step and you could end up at the bottom of the mountain. The views the next morning were some of the most amazing above tree line views i have ever seen. Mt Olympus and a string of others all uncovered in early morning.
Mtn Townsend along the East Side (day 14)
Just north of Brinnon, Washington along the area known as Hoods Canal is Mt Townsend. It looks down on the Canal, Mt Rainier, Victoria BC and the Straits of Salish Sea; and I was lucky enough to view it all on a sunny day.
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.
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 
Corrie Painter Ph.D is a 
Jamie D. Aten, PhD, is founder and executive director of the 
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 
