We have recently received a few pix to share with you ……. no doubt our regular particpants will especially enjoy!
AnCan board members & virtual group moderators, Peter Kafka and Ken Anderson are seen enjoying a little lunch in Kihei, Maui, soon after Ken arrived on Maui last week. Peter is, as most of you know, a full time resident of Haiku, Maui and Ken is visitng his sister at her vacation home in Kihei.
Ken also met John Appler for breakfast today ….. pix to come, we hope.
….. and here are a couple of pictures of Jim W., looking very fit despite his current treatment protocol, and his wife from their recent vacation trip to New Zealand
This week our low/intermediate prostate cancer lead moderator – and AnCan Board Chair! – Peter Kafka reminds us that complementary medicine is exactly that …. complementary to conventional Western protocols. Relying on complementary and alternative can have tragic consequences.
We at AnCan fully support the use of complementary and natural medicine when combined with conventional treatments. We do not endorse alternative medicine (rd)
SEVEN CAN BE YOUR LUCKY / UNLUCKY NUMBER
The New Year began with a message on my phone informing me of the passing of a friend. Never good news, but for those of us in the Prostate Cancer community it is always a poignant reminder of just how deadly this disease can be. My thoughts always go to; “what more could I have done?”.
When I first met this man a couple of years ago, he had just been diagnosed as a Gleason 7 (4+3). He had always been a staunch believer in natural and alternative medicine. Now faced with a diagnosis of cancer he found his way through mutual friends to me. I encouraged him to get more information, a second opinion and a 3T-Mp-MRI and a follow up with a local radiation oncologist. He kind of followed these suggestions reluctantly and in his own way, but didn’t really heed the warnings and decided that he would seek alternative, non-medical treatments.
I kept in touch with this person over the past two years, checking in from time to time. I last saw him about two months ago and he was struggling because his disease had progressed substantially, yet he still adamantly refused medical intervention and wanted to treat it his own way. I am always really challenged in such a situation. I do my best to steer men to the best appropriate options for diagnosis and treatment, but I can’t make someone follow my direction. Men can be stubborn! I am sure I don’t need to tell you this.
Another good friend of mine who is also a Gleason 7 (4+3) took my advice and got a second opinion from Dr. Jonathan Epstein at John’s Hopkins. He also was trying to “cure” himself with an alternative regimen of hot baths, enemas and natural supplements. However, he called Dr. Epstein’s office to go over the pathology results and it happened that Dr. Epstein himself answered the telephone. My friend went over all his alternative treatment protocols on the phone. Dr. Epstein listened attentively and then said, “That’s all good, and that protocol won’t hurt. But you have to remember that your disease can kill you without medical intervention”. For this friend the message got through and he went after his prostate cancer with a radiation protocol. He is now doing just fine.
Many of you are fortunate to be diagnosed with a GL-7 ( 4+3 or 3+4) or even better a GL-6. But the fact that you are on this mailing list or checking out this website is indicative that you are wary and not taking anything for granted. Prostate cancer kills some 30,000 of us each year in the US and not all of these men are diagnosed as Gleason 8,9 or 10.
Never turn your back on this disease. Don’t be a stubborn man and convince yourself that “I know best”. I am not saying that medical intervention will cure your disease or does not come without costs, including quality of life. But early diagnosis, staying vigilant, making smart lifestyle changes and choices and seeking top quality medical expertise can all lead to a longer life in many circumstances.
So, when you roll the dice and the number comes up 7, pay attention!
Please note that any links referenced in this recording can be found in the Prostate Cancer Forum. Log in top right.
We also welcome our Advisory Board Member, Allen Edel (@TallAllen) tonight to contribute his moderation.
Topics:
No CT or bone scans prior to Gleason 9 surgery; peritoneal implants; accessing darolutamide; tragic consequences of complementary medicine alone; positive darolutamide experience; treating advanced PCa without hormone therapy; Tru-beam for spot radiation; oligometastasis radiation; pros and cons of debulking the primary tumor; treatment after enzalutamide fails.
Kudos to Peter Kafka, our Board Chair, and our partner, Pacific Cancer Foundation , featured in this week-end’s article about AnCan! Enough from me – the article says it all!
Our wonderful webdesigner/master and Advisory Board member, Jackie Zimmerman, recently revived her own blog. In her most recent entry, Jackie makes some pertinent observations about life as a patient advocate ….. worth a read! Btw, for those of us older than a certain age, ‘OG’ means ‘original’.
Repeat PSMA scans; Dr. Oh at Mount Sinai; Radiation and inflammation; using a physiatrist; medical marijuana dosage, interactions and side effects; UsTOO Chicago Meeting recording https://ustoo.org/PathwaysChicago2019 ; intermediate vs continuous hormone therapy; Testosterone recovery on IHT; AR V7 responses from Dr. Antonarakis; urinary frequency and drug discussion; sleeping pills; SBRT for spot radiation; bad side effects from apalutamide; distinguishing adjuvant hormone treatment from metastatic HT treatment; LHRH + abiraterone adjuvant hormone therapy
Listen to Jake Hannam outline the groups we run at AnCan.
And visit our YouTube Channel, if you want to listen to any recorded groups ….. for prostate cancer, MS, or sarcoidosis as well as excellent webinars on various topics like diet, exercise and genome sequencing.
Whilst trying to clear my e-mail backlog before year-end, I came across this article from NYU Langone Health Center with the self-explanatory title, “Breast Cancer Screening Found Effective in Men at High Risk for the Disease.”.
In deference to MBCC and our male breast cancer group, that is currently on holiday hiatus and restarts in January, I am posting it. Men with pertinent risk factors like a BRCA mutation, family history, or Ashkenazi ancestry should take particular note.
Advisory Board member, Allen Edel authors an exceptional blog, Prostate Cancer News, Reviews & Views on various ‘technical’ prostate cancer matters – that’s just one of the reasons we are proud to have him on our Advisory Board. You’ll find the blog here where you can sign up for new posts … as of course you can with AnCan just to the right!
Allen’s latest post is an excellent treatise on PSMA, based on reviewing several studies. He makes a number of interesting points to bear in mind when considering PSMA based protocols, amongst them:
consider getting both a PSMA and FDG basedPET/ CT scan before opting for radionuclide treatment
PSMA is very heterogeneous i.e. it can be expressed differently certainly within the same man and maybe even amongst cells in the same tumor
PARP-I’s can promote the potency of PSMA based treatments
Once again, AnCan expresses deep gratitude to Allen for keeping us well informed on important aspects of treatment that many medical practitioners, never mind advocates and patients, would otherwise miss.
AnCan board members & virtual group moderators, Peter Kafka and Ken Anderson are seen enjoying a little lunch in Kihei, Maui, soon after Ken arrived on Maui last week. Peter is, as most of you know, a full time resident of Haiku, Maui and Ken is visitng his sister at her vacation home in Kihei.
….. and here are a couple of pictures of Jim W., looking very fit despite his current treatment protocol, and his wife from their recent vacation trip to New Zealand
