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!
Chris O’Connor lost; access to pain meds; benefits of darolutamide; NIH – Bone biopsy experience, mutation analysis & CTC’s; CBD – hemp or marijuana?; failing Xytiga – AR V7?; darlutamide and AR V7; exercise and chemotherapy; lung nodules
WOW – what an exciting meeting …. visits from our friend Jerry Deans, Vice-Chair of co-sponsor,UsTOO, who is considering an exciting new drug trial. Then we had Prof Bill with a live update on his hospice, Joe Boardman who has scaled several high peaks while on ADT (see earlier Blog post), a new younger man and of course all our regulars.No wonder we ran over by 20 minutes!!
Here’s the summary:
Exciting new drug trial Regeneron5678; Provenge timing; Xtandi fails for younger man; Prof Bill updates us hospice Tx; Mountaineer Joe Boardman on life w/o T; docs won’t approve bone strengthener; dropping Zytiga from adverse psych effects; don’t panic when miniscule PSA heads north; using medical marijuana; coming soon – Dr. Larry Fong!
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 ….
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.
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
