Friday, September 21, 2018


   If you have bone metastasis or have been on Androgen Deprivation Therapy for any length of time, your Physician may prescribe Bisphosphonates to strengthen your bones and delay onset of osteoporosis.

Bisphosphonates are a class of drugs that prevent the loss of bone density and are used to treat osteoporosis and similar diseases. They are the most commonly prescribed drugs used to treat osteoporosis. Evidence shows that they reduce the risk of fracture.

Bone tissue undergoes constant rebuilding and is kept balanced by (osteoblast creating bone) and (osteoclasts Destroying bone). Bisphosphonates keep bone matter from being absorbed by encouraging osteoclasts to undergo cell death,  slowing bone loss.

The uses of bisphosphonates include the prevention and treatment of osteoporosis , bone metastasis , and other conditions that cause bone fragility.

Bisphosphonates, when administered intravenously for the treatment of cancer, have been associated with osteonecrosis ( Bone Death ) of  the jaw with most cases occurring following high-dose intravenous administration used for some cancer patients. Some 60% of cases are preceded by a dental surgical procedure (that involves the bone), and it has been suggested that bisphosphonate treatment should be postponed until after any dental work to eliminate potential sites of infection. A number of cases of severe bone, joint, or musculoskeletal pain have also been reported. Common Bisphosphonate names are Pamidronate, Neridronate  Olpadronate  Fosamax Boniva Actonel and Zometa. There are others. 

    How doctors prescribe Bisphosphonates has evolved over time. Standard practice several years ago called for monthly ongoing infusions. It was then discovered that patients received the same benefit if they only received an infusion every 4 months. Recently studied have shown patients should receive Bisphosphonates no more than two years. Longer use can lead to bone softening and fracture risks. It appears that after 2 years the drug has the potential to do more harm than good.

   If  your doctor feels you may need Bisphosphonates, it is important to have a complete Dental Examination to determine if you are in need of any dental work requiring bone involvement. Examples include, extractions, implants, and gum tissue grafts. If you require dental work it is important to have it all work completed prior to starting treatment. Bisphosphonates have a half life of 10 years or so and you cannot have any dental work involving bone until the medication is no longer in your bones.

   Bisphosphonates are a very effective treatment and are well tolerated by most patients. They are effective against osteoporosis and treating bone metastasis by slowing the growth of tumors on the bone.

Appointment anxiety

   I have been dealing with this disease for over 12 years now. 12 Years, 2 months, and 7 days to be exact. I wish I could tell you that appointment anxiety gets better but for me it has pretty much stayed the same. The only difference now is that instead of monthly anxiety I only have to go through it 3 times a year. It is always the same. A week before my appointment I begin to feel phantom symptoms. The day of my appointment I am stressed out. After the appointment I am glued to my phone until my PSA comes back. Once I get the test results I pour a glass of Willamette Vinyard’s Pinot Noir and celebrate the results. It use to be much worse but there are things I have learned to minimize the stress of oncology visits.

   The first thing that changed appointment anxiety was making peace with the disease and my own mortality. The process began when our band played at a benefit for a 4 year old little girl who was battling a rare cancer and was losing the fight. Afterward I could not look at my situation the same. She was only 4 Years old. She had never known what it was like to be a little girl. Her entire life was cancer, doctors, chemo, sickness, and hospitals. We all leave this world. My life, despite the challenges and pitfalls, has been amazing. There are many things that I still want to see and do but I have not wasted a day since my diagnosis so when it is my time I hope not to have regrets.
   Another thing that helps anxiety is the realization that PSA is just a number. I have been blessed with non existent PSA for 5 years now but even if it rises it simply means that things will once again be changing. My original PSA was over 3200. I have a long way to go before I see those numbers again. 
   I prepare for my oncology appointment by writing down any questions or concerns that I might have and take those to my appointment. I don’t leave until I feel my doctor has answered them all to my satisfaction. 

Saturday, September 1, 2018

Your Never Too Old

  This year was the summer of the wakeboard. I have been an avid water sports enthusiast my entire life. Somehow being active on the water just puts everything into perspective. Last year we upgraded our boat and the new one has a tower and came with a wakeboard. I tried wakebarding in my early 20’s but never really did it enough to be considered a wakeboarder. I would rather slalom ski anyway. 
   This year I decided to see what all the fuss was about. I am really glad I did. What a blast!
   At first I wasn’t too good. I kept trying to ride the board like a ski! It usually ended rather ugly.

   This one hurt pretty bad. Eventually I started to get the hang of it and by last weekend I had learned to fly. 
   I will be 55 in December. I have been fighting Stage 4 Prostate Cancer for over 12 years now. I continue to do well in the fight. We only get one life that we know of. Despite Cancer I will continue to live life to the fullest as long as God allows me to.

The Importance of Prostate Cancer Screening

   Today, Saturday, September 1, begins national prostate cancer awareness month. Today, I want to talk to you about Prostate cancer screening. Please click link to read my article at

Tuesday, August 28, 2018

P.C. Claims a good man

   This post is about saying goodbye to a courageous prostate cancer warrior, advocate, and friend. Rob Barniskis passed away from prostate cancer late Friday Evening from his ten year battle with advanced prostate cancer. He leaves behind his wife, sons, and a Huge hole within the advocacy community. He will truly be missed.
    Rob’s battle with prostate cancer begin 10 years ago with an advanced diagnosis. The cancer was aggressive and quickly spread to his soft tissue. He fought bravely for his family himself and others within the community. The cancer was ultimately untreatable.
    I first met Rob two years ago at PCRI. He and I were both members of Share Network and co-presenters  unveiling the “My Prostate Cancer Roadmap” website sponsored by Janssen Oncology. We quickly became friends. We had shared similar paths in our journey. We had both been on Zytiga for 3 years. We both worked within the advocacy community. Due to liver metastasis he was not eligible to receive Provenge. 
   Shortly after PCRI Rob began to fail Zytiga. Due to cross-resistance Xtandi was not effective against the cancer. Rob went on Chemotherapy and other treatments as he attempted to get the upper hand on the cancer. Sadly it was not to be. He confided in me a couple months ago that his body was tiring of the fight.
   I last heard from Rob 2 weeks ago. He was transferring to home hospice care and was essentially saying goodbye. He told me he would be waiting on the other side.
   Rob is just another good man who lost his fight against this stupid disease. How many more will we lose before we finally defeat the beast. How many Grandfathers, Fathers, Sons, and Friends will we prematurely say goodbye to because of Prostate Cancer.
  I am tired of losing friends. It is time to cureProstate Cancer once and For All.

Friday, August 10, 2018

5 Years on Zytiga

   My how time flies. It is August already. As of the first I have begun month number 60 on Zytiga. My last Oncology appointment was July, 24. My numbers remain undetectable. I continue to be amazed by the overall success I have experienced throughout the course of the last 12 years. 
   There were some changes made at my last appointment. I will no longer be taking Zometa for bone density. Apparently the latest studies have shown that 2 years is the optimal duration to receive Zometa. Any longer than that and it is possible the drug can begin to weaken your bones. I have been on biphosphonates for almost 5 years. Doh!

   I did not see my doctor but rather the P.A. I am fine with that as my disease is stable.

  Some of the questions I had however could not be answered by her. We discussed going off treatment but she said I must discuss that with the Doctor. My next appointment is not until November but it will be with the Doctor and we will discuss those options at that time. 
   I am not sure how and when it happened but I have grown very complacent in regards to cancer. I cannot remember the last time I reviewed clinical trial data. I have been too busy living life. 

We have spent much of the summer as we always do. On the water! Since the end of May, there have been very few weekends at home. I have spent as much time as possible learning to wakeboard better. My goal was to complete a backflip by summers end but after my last crash I am rethinking that goal. Wake boarding might be a lot slower than Slalom Skiing but the wipeouts hurt far worse. Imagine traveling at 25 mph and having your feet suddenly stop. Ouch!

   Two weeks ago my  sweetheart and I became empty nesters when our 20 year old decided it was time to fly away. She lives a mere 8 miles away but I cannot believe the difference in our lives. We have never experienced having the house to ourselves. It is so peaceful. We are finding out what it would have been like had we met in our teens. It has been kind of fun.

A few weeks ago my adult daughter came up from Texas for an extended visit. She is back home now but while she was here, I taught my granddaughters to waterski. 
   I am so thrilled to still be here to share my life. It has been an amazing 12 years. At the time of diagnosis my granddaughters were not even born. Now my eldest is 12 Years old. My life is filled with love and adventure but also with sadness at times. I found out only 2 days ago that I will soon be losing another friend to this disease. It makes me so angry. We need a cure for this disease. Until we have a cure, I will do my best to be here to share a message of hope. One thing is certain. We all die. Not everyone truly lives. I am happy to say that my friend learned early in diagnosis to live his life. I encourage all of you to do the same. Do not waste a single day of this remarkable gift we call life. Todd


Wednesday, August 8, 2018

Survey opportunity. $50 Amazon gift card reward.

I just took a really simple survey and received a $50 Amazon gift card for doing so. They are looking for 15 more persons to take this survey. Qualified persons are prostate cancer patient advocates who can speak about metastatic prostate cancer. You do not have to have metastatic prostate cancer. They must also be willing to call and record their answers. Once they have called and reported their answers they will be paid eight $50 Amazon gift card. It was super easy. I think there may have been 10 questions. I will post the link below. Simply click the link and follow the instructions.