Some of you may recall Joe Boardman participating in our advanced prostate cancer group from the middle of last year. Joe’s unbelievable mountaineering feats with his wife and son are described below ….. any of us would be shouting these achievements from the mountaintop, but to do this on ADT – wow! Joe did, and continues to, shout his conquests from the top of the mountains ….
This interesting study coming from the renowned lab of Johann de Bono at the Institute for Cancer Research in the U.K. should help us understand why some patients may respond well to the promising PSMA-based therapeutics, like Lutetium 177-PSMA, and others may not.
Through analysis of prostate cancer samples, the authors report that the presence of prostate-specific membrane antigen (PSMA) is extremely variable both within one patient and between different patients. This may limit the usefulness of PSMA scans and PSMA-targeted therapies. They show for the first time that prostate cancers with defective DNA repair (e.g., BRCA, ATM mutations) produce more PSMA and so may respond better to PSMA-targeting treatments. The variability in PSMA production by prostate cancer cells was seen in both castrate sensitive and castrate resistant tumors.
Given the epidemic numbers of prostate cancer, there is a significant weekly news flow of trials, drug, discoveries and more. As Peter points out this week, your AnCan moderators dedicate a lot of time to keeping you informed. Join one of our 7 monthly PCa groups to benefit yourself.
I think I have been involved with Prostate Cancer Support groups in one capacity or another for some four years or more and one thing that stands out to me is that, like snowflakes, no two of us have identical disease. There are so many nuances to this crazy disease, and for those of us with more advanced disease it really behooves us to stay on top of the situation.
Great doctors will try to stay up-to-date on all the changes in treatment, diagnosis, genetic profiles etc. and treat us as individuals. Average medical professionals might tend to treat us as just “another” man with prostate cancer and use standard of care treatment that has been prescribed for years. This might be adequate for men with low grade disease which is the vast majority of us. But if prostate cancer is diagnosed at a more advanced and complex condiiton, or progresses, it is important that we see ourselves as individuals and be treated as such and not just as part of the herd.
Probably the last thing we wanted at this point in life was another career, but staying informed and advocating for ourselves as a man with prostate cancer is vital. The medical field is abuzz with new information every week and surprisingly much of it relates to prostate cancer, and that demands our attention. New treatment drugs and regimens are being approved even as you read this, and studies are indicating warnings and new information about old standards of treatment. How can anyone keep current in this environment?
The answer is community. Collectively we can manage this flow of new information that confronts us all. This is why AnCan has chosen the model of weekly support groups for men with advanced prostate cancer, our bi-monthly meetings for those with low and intermediate grade diagnoses and monthly gatherings for those who are being followed on Active Surveillance. Besides making ourselves available to the constant stream of men who are newly diagnosed, we seem to always find new information that is pertinent to many of us.
In addition to our own support group, I have been an active and engaged participant for the past 5-years at the annual PCRI (Prostate Cancer Research Institute) conference that is held at the LAX Marriot each September. If you have never attended, I would encourage you to check it out at PCRI.org. It is the largest patient oriented prostate cancer conference in the world. Very affordable, interactive and engaging, the subject matter is presented in understandable terms by a wide range of experts in all aspects of prostate cancer. If you are in attendance this year drop by our table in the lobby and say hello. I would love to meet you.
Reports on Bill Burhans and Richard Foody; moving from enzalutamide to abiraterone; choice of steroid with abi; ADT induced depression; spot radiation for mets; how come your penis woke up?; bone biopsy experience; find the right QB for your medical team; has ADT nailed your balance?
Dr. Oliver Sartor recently gave a presentation for a Medscape CME event that was titled, “Evaluating the Totality of Evidence: Management of Locally Advanced and Metastatic Prostate Cancer.” He included a slide showing the comparative side effect profiles of enzalutamide (Xtandi) – ENZA, apalutamide (Erleada) – APA and darolutamide – DARO. Darolutamide appears to have a more favorable side effect profile when compared to Xtandi or Erleada, especially with regard to fatigue and cognitive deficit. Darolutamide is expected to be approved by the FDA later this year.
This randomized, Open Label Phase 2 study published in JAMA Oncology compared various dosing schedules of prednisone and one for dexamethasone which are used with Zytiga (abiraterone acetate). As you may know, some form of steroid is necessary for use with Zytiga to compensate for its inhibition of natural cortisol production. If not compensated, patients on Zytiga would suffer from a metabolic syndrome known as mineralocorticoid excess (hyperaldosteronism) resulting in hypertension and hypokalemia (low potassium) which could lead to metabolic alkalosis, tetany (muscle cramping) and irregular heart rhythms.
The various prednisone regimens included 5mg once per day, 2.5mg twice per day, and 5mg twice per day. Dexamethasone was given as 0.5mg once per day. For each of these subgroups, the following percentage of patients had no mineralocorticoid excess (a good thing!):
Total lean body mass decreased in the prednisone groups and total body fat increased in the prednisone, 5 mg, twice daily and dexamethasone groups. In the dexamethasone group, there was an increase in serum insulin and insulin resistance, while total bone mineral density decreased.
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.
