To replay the webinar presentation, please click here. We recommend you download the Presentation Slide Deck to follow along – FongAnCan9-2019 .
AnCan is excited to host one of the World’s leading cancer immunologists, Professor Dr. LarryFong. Not just a leading researcher in the field of immuno-oncology, AnCan’s good friend Larry is a highly compassionate genitourinary clinician who has treated several of our participants over many years. We are honored to have Larry as an Advisory Board Member,
As you see above, Larry loves to smile – what a gift in the field of oncology! Not only does he smile often – he also has a great sense of humor. There’s a wonderful story behind this heart-warming pix with our dear, departed buddy, Jerry Carniglia – listen in to hear it! Amongst Jerry’s many talents, he was a collectible fine artist; this video, shown at a posthumous show at the Townsend Gallery on UC Berkeley campus, will make you smile and cry! Jerry’s Trust has donated some 18 enormous canvasses for display on rotation in the brand new Bakar Precision Medicine Building.
Dr. Fong will first explain the principles behind immuno-oncology in understandable terms with a pan cancer focus. He will then take questions on specific disease – BUT PLEASE keep your questions general rather than case specific.
Yet again, our Moderator Peter Kafka offers wise words from his group meting reminder that many of you will find true! Thank you Peter …..
All of us in the AnCan community are volunteers. At this juncture none of us are paid to moderate our calls or assist others in navigation or advocacy with their cancer journey. This might change at some point as finances permit and circumstances evolve, but for now we remain no less passionate or committed to our calling. There are of course benefits to the work we do, and for me one of the great benefits I have come to know is new friendships. The men and women I have come to know through this work in these past five years have made a great impact on my life.
Friendship is an interesting human cultural phenomenon. It is often noted that women tend to form closer and longer lasting friendships than men. Men can become “lone wolves” in society, particularly as we age and our boyhood friendships fall away. It takes work and commitment to initiate and maintain friendships as we grow older and our life purposes change and evolve.
The notion that new and significant friendships can form in the autumnal days of our lives is a foreign concept to most men. The idea that there are men who are committed to being of help to perfect strangers who are trying to find their way through the weeds of prostate cancer decisions can no doubt seem suspicious. “What’s the catch?” Simply put, there is no catch! For some unknown reason this disease seems to have propelled quite a few of us into a place where we just want to help others as best we can.
I always look forward to these on-line/telephone AnCan meetings. Even though most of us are separated by many miles and may never meet each other in person, strong bonds are sometimes formed and significant friendships result. Maybe I should end this with a string of clichés; We are not ships passing in the night – but rather all in the same boat and pulling for each other.
We at AnCan through our online/telephone weekly support meetings and advocacy work hard as peers to provide whatever support and backup as we can in your journey with prostate cancer. But we don’t claim to have all the answers. We encourage you to share your experiences. We learn from each other. Keep connected, information is power! We are always there for you.
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.
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.
Advocacy is right there in our tag line! Most of you know how AnCan provides navigation and support … but advocacy, well that may just be a little more vague. This past week a great example presented itself that helps illustrate how we are making our mark on cancer and healthcare nationally.
Many of you have already signed up for the The Metastatic Prostate Cancer Project that Dr. Eli Van Allen is leading out of the Broad Institute at MIT. It is one of several patient-participation projects under the Count-Me-In umbrella. If you have not yet sent in a sample, it’s easy to do – just click here to find out how to participate. And AnCan is happy to connect you to one of our many participants who have already contributed their data. A few readers may have signed up for one of the other patient-participation projects …. like breast cancer or one of the other 3 you can learn about by visiting Count-Me-In’s website. Forgive me for using ‘prostate’ as our example … you’ll see why if you read on.
I mention this because last week Eli pushed out an excellent 8′ video on YouTube showing how we can play with the data base MPCP have created to understand and analyse the records inputted to date. Currently, it only reflects 19 men, however the MPCP 2nd Quarter Report tells us there are a lot more in the works waiting to be entered. After watching the instructional video, it may strike some, as it did me, that MPCP could make a video to respond to the frequently asked question – how can the MPCP help me personally? In fact, how can each Count Me In project make its research more patient-centric. I reached out to Eli who was very receptive. As a result, Len, Professor Bill and yours truly will be putting our heads together with one of Count-Me-In’s founders, Dr. Corrie Painter, next month – so watch this space!
As you see above, Larry loves to smile – what a gift in the field of oncology! Not only does he smile often – he also has a great sense of humor. There’s a wonderful story behind this heart-warming pix with our dear, departed buddy, Jerry Carniglia – listen in to hear it! Amongst Jerry’s many talents, he was a collectible fine artist; this video, shown at a posthumous show at the Townsend Gallery on UC Berkeley campus, will make you smile and cry! Jerry’s Trust has donated some 18 enormous canvasses for display on rotation in the brand new Bakar Precision Medicine Building.
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