Moderator and Board Chair Peter Kafka’s message in his Low/Intermediate Prostate Cancer virtual group reminder this week, is very applicable to ALL PCa patients .,.. and maybe other conditions too; this same topic came up recently in the context of MS!
Speaking of MS, we are kicking off our new MS virtual group on Tuesday, Sept 24 … please make anyone you know dealing with this condition aware. Like all our meetings, the meeting is free and drop-in. Sign up by visiting www.ancan.org.
Kudos, Peter ….
As I sit down and write this evening, I find myself at the annual PCRI (Prostate Cancer Research Institute) conference in Los Angeles. It has been a very full two days thus far and another day coming up tomorrow to conclude. This is no doubt the largest patient oriented prostate cancer conference to be found anywhere and quite a remarkable and impressive assembly of patients, care givers and medical professionals. I am understandably overwhelmed.
I think the old phrase, “leave no stone unturned” has taken on new meaning for me this weekend. I am not sure I fully grasped just how complex the disease of prostate cancer is and how many facets there are to the development, diagnosis, and treatment there are to this condition. I have been dealing with my own situation for some 6 years or so as well as trying to help many other men find their way through the maze which prostate cancer can be sometimes. But this weekend it became clearer to me that we have outgrown all the old treatment modalities and understandings of this disease. I know that there are still lone urologists out there who believe that they can diagnose, treat and guide men through any aspect of prostate cancer. And perhaps you have relied on such a medical professional or still do. But I believe that the model of one man – one doctor is way out of date. So much has changed and is changing in the world of prostate cancer in the past few years that no one doctor can possibly keep up to date with all the advancements. It takes a team; it takes collective knowledge.
AnCan’s paramount stated purpose is to smooth the road for those coming along behind; and the quintessential shared experience must be entering hospice. It is rare a person at this stage of treatment is both alert and motivated to share the experience with others. Yet it is hardly surprising that a man dedicated to lifelong learning, research and educating others has committed to disseminate yet more knowledge in the hope it will make theirs and their loved ones’ lives easier.
There is good reason why Professor Bill Burhans has served on our Board and Advisory Board ….. because he is committed to helping and teaching for as long as he can. Please take this rare opportunity to listen to Prof Bill sharing his hospice experience. And Bill ….. may your journey always be easy and tranquil – we love you!!
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.
