Wednesday, July 27, 2016

Oh What A Difference!

   I met my new doctor yesterday and I couldn't be happier. What a difference.
Here is how I will make a comparison. 
   Last Monday, July 18, I had an appointment with my Oncologist at Kaiser Permanente. It went something like this.
   Hello Mr. Seals, how are you today. Is your PSA ever going to go up? Your lungs sound good. See you in 2 months and I will sign the orders for your prescription. 
   The entire time with my doctor was 5 minutes. There was never any discussion of what is next or the future or anything. 
   On Monday, July 25, Mandy and I drove south to Providence Cancer Center in Portland Oregon, to meet my new Oncologist. 
               Dr. Brendan Curti.

   My new oncologist sees patients one day a week. The balance of the week is spent in the lab. Dr. Curti heads a research team at Providence Cancer Center in the field of immunology. His team developed OX-40, an immunotherapy headed for a Nation Wide Clinical Trial in the coming months.
   To be fair, I cannot complain about the quality of care I have received at Kaiser Permamente. I can however state that they have never once went over and above any normal standard of care and have put my family through hell by forcing me to fight to obtain medication while this disease was progressing.
   The moment Dr. Curti walked into the exam room, we knew we had found our new doctor. His demeanor was both professional and compassionate. We exchanged pleasantries and then discussed why I was there. To my surprize, he listened to me. I explained to him that I have a minimum 30 year plan and when I stated that failure was not an option he didn't smirk. I told him that my current physician never discusses current or future treatment plans. I mentioned that I am not the type to get caught watching the paint dry and that I need to be included in the process. He listened to it all. 
   After our chat he did a thorough exam and then it was his turn to speak. He told me that I must realize there is no need to do anything different at this point. After all, I am in a durable remission. He acknowledged the fact that one day the cancer will return. He told me that if my PSA reaches .5 he will give me a pet scan. He talked about using radiation to kill small cancer clusters. He talked about using chemo and Xtandi and other immunotherapy. He talked about things my former oncologist never brought up.  
   Having a medical team that has your best interests at heart is paramount. I have never had that luxury until now. Amanda and I no longer feel alone in this battle. We can look forward to the future with confidence. Today we feel thankful and grateful!


Tuesday, July 19, 2016

Survivors guilt


   Sometimes I think survivors guilt is the wrong terminology. When a group of army buddies are caught in battle and only a couple survive, the guilt that those soldiers feel is real. They come home feeling like they should have died with their buddies on the battlefield. 
In my travels and especially due to the fact that I am a musician, I have been able to participate in many cancer benefits. The hardest ones are always the children. Seeing children dying of cancer when they haven't started living yet is hard. Seeing a young mother in her mid 30s with two small children and stage 4 breast cancer is hard. Telling her to stay positive sounds hollow as she endures treatment after failed treatment. She knows that her children will grow up and she won't be there to see it. Only the most jaded among us cannot be affected by her bravery! Watching our friends die because no treatment worked for them while we have reaped the benefits of multiple successful treatments is hard.
   Tony Crispino's motto is stay positive. Jordan's motto was live thrive survive and my motto " live it loud " are all really positive statements but the fact is that although we want to convey that message of hope and we pray the treatments are successful 50% will fall below the median life extension and 50% will exceed it. A small percentage will exceed it many times over. 
   I do not feel guilty for surviving. I feel righteous anger that others did not. I feel compassion fatigue each time a new guy comes aboard with late stage disease and a poor prognosis. I want to encourage and give hope. Sometimes the results are positive and sometimes not. The higher the Gleason score the harder it becomes to give encouragement. We make friends only to lose them. In the process, a hardening of our hearts occurs. It is a defense mechanism. It is natural. It is necessary.
   Yesterday, for me, was a very bad day. I lost a friend I had never met. I felt a kinship with Jordan. Our diagnosis was very similar. We shared the same positive outlook.  We exchanged a few emails. We talked a few times. I believed he would do well. He didn't and now he is gone. Why??? Why did he fulfill my original prognosis while I have exceeded all expectations? Not Guilt! Just heart wrenching sadness. He, I believe, is in a better place. My tears are for his family and for myself!

  In society we must give everything a name. In the process we marginalize and cheapen what it really is. It is love and it goes beyond cancer and beyond the grave.

Wednesday, July 13, 2016

What is Provenge

  Six years ago, after two phase 3 clinical trials the F.D.A. approved Provenge therapy for the treatment of castration resistant, (cancer that no longer responds to hormone therapy) metastatic, ( cancer that has spread to the bones or other organs) prostate cancer, for patients who are Asymptomatic or mildly symptomatic. ( my take on that is they are in little or no pain and healthy enough to do the treatment.) To this day, only 8% of men who are eligible for Provenge therapy actual receive the treatment.
NCCN guidelines recommend Provenge for first line treatment after a patient has failed hormone therapy. (Cancer is spreading despite the use af Androgen Deprivation Therapy). Many within the medical community believe that subsequent treatments work better and for a greater length of time if patients receive Provenge first. If this is true, and I believe it is, then why is it that over 90% of patients who are eligible to receive the treatment do not get it?
   I believe the short answer is 2-fold. Money and education. Money is obvious. Provenge is expensive. I have only two comments regarding money. The first is this. My dad use to say " good ain't cheap and cheap ain't good." The second is a joke Willy Nelson told in the Dukes of Hazard movie. "Why are divorces so expensive? Because they are worth it." Provenge is Good and it's worth it. Medicare and private insurance usually cover the cost of Provenge and there is a patient assistance program through Dendreon that also helps to cover the cost of treatment.
   The second part of the answer involves education within the medical community and within the patient advocate community. 
   I received a call from a guy last week who's doctor told him that Provenge doesn't work. I couldn't believe it. My doctor refused to prescribe it to me 4 years ago for the very same reason. He told me it wouldn't work and it was a waste of resources. I would not take "No" for an answer and we fought it all the way to the State Insurance Commissioner where he ruled in our favor. It is needless to say but I no longer see that Doctor. He based his professional decision not to provide on an article written by a stock analyst. Personally I think she held stock in another company but that is purely speculation on my part. Physicians need to be educated on the benefits of Provenge. It amazes me that 6 years after FDA approval there is still so much controversy surrounding the treatment. In some ways I get it. Medical logic dictates that if PSA is rising then the cancer is growing. Likewise if PSA falls then the cancer is shrinking. Provenge is different. It does not usually exhibit a PSA response. Doctors have no standard way of gauging it's effectiveness. This puts Physicians in the precarious position of not knowing and I believe in general, that it is not comfortable place for them to be in. It is difficult to have faith in a treatment when one cannot see the results. Provenge does work however and there are mechanisms that show it working. In the week and a half between the first infusion of Provenge a patient receives and the second Lukapherisis, labs can already detect an immune response.
   We in the advocacy community, need to do a better job of educating patients as well. Men tend to be a silent crowd for the most part. Real men do not cry, complain, or talk about personal health issues. This must change. We must inform those who are forced to follow us on this journey of every treatment option available to them. It may very well save their lives.
    No real man cries

What is Provenge

   Provenge/Sipeulcel-T, is the first ever ( more will follow )cancer vaccine for prostate cancer. It is an immunotherapy that fights Prostate cancer wherever it is in the body. It is a treatment administered usually ( it can take longer ) over a period of 5 weeks in three seperate Lukapherisis appointments( the patients blood is circulated through a centrifuge spinning off the white blood cells and plasma. This process takes 3-4 hours and other than a needle stick is painless)and Infusions ( the patients own activated white cells are re-infused) four days later. On a normal schedule this process occures every other week. 
How it is made./How does it work!

  I am not a molecular biologist nor do I pretend to have an understanding of how T-cells, antigens, or other enzymes work and interact with each other. All of that being said, I will attempt to explain the process in blue collar terminology. I use to wonder why cancer cells are not stopped by our immune system. The answer is that the cancer cells are too similar to normal cells. Granted, they are mutated angry cells hell bent on killing us but the immune system cannot distinguish between them. Enter Dendreon. At the Dendreon labs, white cells are seperated to eliminate cells that are not useful to the process. Out of the 60 billion cells collected, aproximately 75% do not make the grade and are disposed of. The remaining cells are then introduced to an antigen. This is where it gets fuzzy to me and I may not be completely accurate in my explanation but I will be pretty close. I believe that the antigen is similar to an antigen produced by Prostate Cancer. The antigen causes the Dendreonic Cells ( those cells that make the grade ) to proliferate. (Reproduce) and are then incubated outside the body for a couple days. The reason the cells are incubated outside of the body is so the immune system will not attack the antigens that activate the cells. Once the cells have been activated and incubated, they are re-infused into the patient where they interact with normal white cells and attack the cancer at the source. Simply put, the Dendreonic cells grow up eating cancer and develope an appetite for it. After infusion they are hungry and lead the entire immune system to a prostate cancer buffet. There is an interesting video on the Provenge website that explained the process in greater detail. Simply go to and have a look around. While there, you might go to patient stories and check out my video. I am a Provenge patient and a 10 year survivor of stage IV prostate cancer.

Side Effects

  The label says there are side effects. Some men do experience them. Most side effects are mild flu-like symptoms that last a day or two. I for one experienced no side effects whatsoever. It was the easiest treatment I have ever received.

A cure.

  As of Thursday July, 14, 2016 there is no cure for advanced prostate cancer. I believe a cure will happen in my lifetime.  (thanks to Provenge I believe I will live to see it)
I believe that immunology holds the key that will one day unlock the door to a cure. I believe that biotech companies like Dendreon and others will soon crack the code that cures this disease once and for all. Provenge is not a cure. Provenge is a tool that helps your immune system to identify and destroy cancer cells. Provenge is you. It is your cells empowered to beat up cancer and take its lunch money. To me, nothing could be more natural. My doctors believe that Provenge is why I am doing so well in my battle against the beast. 

  If you have advanced prostate cancer that no longer responds to hormone therapy, talk to your doctor about Provenge. If he won't prescribe it then find a doctor who will. Don't take "No" for an answer. In this day and age, we must be our own advocate. We must insist on what is best for us and not allow others to decide for us. Insist on tomorrow. Insist on Provenge. YOLO ......Todd