The CT Scan results are back and they are a bit mixed. The lesions on the liver and lung are still there, but unchanged. The enlarged lymph node near my right lung is still slightly enlarged, but has decreased a good amount. Those were the good parts, and they are definitely good. The not so good part is that the disease is progressing. The bladder wall has thickened noticeably from the prostate and the tumors have grown up to and possibly into the rectal wall. The increase in tumor size has caused hydronephrosis and hydroureter in my right kidney. This can cause infection at the least, but can lead to long term severe damage if left untreated. The solution is to have a stent surgically implanted. This is a pretty standard and routine procedure, so I am not overly concerned. I have had some significant nausea, lower back pain, and abdominal pain over the last 2-3 weeks, so this pretty much explains why. The concerning part is that the cancer is growing in multiple areas and at a fairly signnificant rate. I have discussed this with my Doctors and the consensus seems to be chemotherapy. There is still a possibility of doing another hormonal treatment first to stabililze the cancer for 2-3 months, but that would mostly be to get the logistics of a 4-10 month chemo regimen in place. They would not expect any long term changes to what would need to be done. I am still working with some alternative treatments. I am not sure if they are slowing it down or not, but we will continue to battle with everything in our arsenal. I pray, much more than daily, for healing and I hope that it is God's will that it happens. Until it does, we will do all we can. I pray for a peaceful and joyous Holiday Season for all of you.
Brian.

I am beginning to hate Roller Coasters...

Well, the PSA came back this month. It is up from 10.7 to 15.3 in about 3 weeks. That seems to indicate that the increase in Keto and Hydro did not work and we are on to the next option. Those options would include DES (an estrogen based hormonal therapy) or Chemo. Some have had success with both of the treatments, but the duration varies, so we will just have to give it a try and hope for the best. I will be discussing these options with the Prostate Oncologist in LA this next week and will see if he agrees that it is time to move to the next. At our consultation, he seemed to think that Chemo was the next best option. I am still continuing to pursue Provenge, but that is a process that will take awhile to accomplish. I will also be having a CT scan done on Dec 17 to see if the cancer is progressing. The pain associated with the rise in PSA would lead me to believe that it is. Hopefully, only in small increments. I will update again after the CT. Thoughts of Happy Holidays to you and yours.
Brian.

The increase in the Keto and Hydro dropped the PSA from 16.6 to 10.7 in 1 week. That is good news that there is still a strong response to the Hormonal Treatment. The longer we can get this to work is more time before we have we need to switch to something else. Yesterday was 1 year since the Bone Scan confirmed the spread of the Prostate Cancer to the bones throughout my body. 1 year later and I seem to be doing pretty well overall. The PSA has been mostly controlled with some ups and downs and the pain has let up since the radiation. I believe that we are holding our own and hope that continues for a good, long time. I hope Thanksgiving was good for all of you. This fight definitely reminds me of the things that I am most thankful for.

New PSA and stuff

My PSA went from 1.6 in August to 2.8 in early October to 16.6 last week. Not really what we were looking for on the PSA, but the Alkaline Phosphotase (bone indicator) dropped to 43. Kind of a mixed bag of results. We are still working with the Enzymes and Ketoconazole, but we have 2 months of increase so it is time to review once more. The initial thought for this month is to raise the dosage of Keto and Hydrocortisone to the maximum dose, which we are doing. This still may be a temporary solution if next months PSA continues to rise. We had been discussing consulting with some doctors in Los Angeles that are strictly Prostate Oncologists. Very impressive credentials and experience. We decided that we should contact them and see when we could get an appointment. They had a cancellation for Wednesday November 17th and we were able to get travel arrangements made. So here we are. I will meet with Dr. Lam of Prostate Oncology, Inc tomorrow. At some point I will consult with Dr. Scholz, as well. These are names that many with Prostate Cancer or in the arena of the treatment of Prostate Cancer would know. Teresa and I hope for some additional options explained to us and also to deal with oncologists who are very informed and educated about our options, now and down the road. As many of you who read here and also David Emerson’s excellent blog, “The Big C” know, the options for us seem to be amazingly few when compared to the large number of men diagnosed with Prostate Cancer annually. A group associated with Prostate Oncologist, Inc that was formed to bring awareness, and hopefully funding, to Prostate Cancer Research and Prevention is BlueSeptember. I have also added a link on the right side to this group. I will be sure to share my experience with this appointment as soon as possible and hope that I will be able to pass on information to any who fight the same battle. Talk to you soon!
B.

Risk vs. Reward

I haven’t written anything in awhile, and haven’t written anything much of substance in even longer. I have felt a little unsure of where I am and where I am going in regards to this cancer and my prognosis. I feel pretty good right now. I get tired at the end of the day and the fatigue sometimes leads to back and shoulder pain, but I can do things most of the day. Sometimes fishing, or building a chicken brooder, or just messing around with the kids. I feel limitations that weren’t there last year, but I also have more energy than I did a year ago. If I get decent rest, all is well. So, do I believe that this is the eye of the storm or am I actually beating this thing? That is the $64,000 question. Like most things in life that are impossible to know without a crystal ball, it comes down to perspective and faith. Perspective in the sense that I need to maintain a positive attitude about where I was, where I am, and where I am going. This is not only true with cancer, but pretty much everything in my life to help recover from cancer and to live the life that I know I was meant to live. Most days I can do this. It is only because of people like you who read these words. Even if I don’t know who reads them, because I know that people do, and it means something. The faith that I can beat this is a little harder and can be a little slippery. I have the faith, but I know that this is a tough battle that most eventually will not win. Most hope for a significant delay and each day becomes very precious, but it is hard to dare to dream that this can be defeated and gone. That is the thought that hovers in the back, sides, and sometimes front of my brain. Do I dare get my hopes up that I can be cancer free by doing my part? I have decided that I can dream that dream and win this war. It is about faith. It is the same thing as trying to live a good life, not only because it is the right thing to do, but because I believe that I can live eternally with my family and my Heavenly Father. Some may think that this isn’t cool or I am fooling myself. Do I know without a doubt that this is true, or do I have to believe on faith? It has to be faith. But, if I am wrong, so what? I have hopefully lived a life to be proud of. I will have hopefully provided a legacy of example to my children. There is only upside. No downside. This battle is the same. If I do everything I can do to fight this and believe with all my heart that I will win, I just might. Will I ever know for sure? Not until the last card is played on the final hand. If I am wrong, am I a fool for trying? No. I will have shown courage, dignity, grace, strength, and faith. I still win. No downside. The “Point of the Post” then, is this. It is okay to aim high and dream big. If you suffer from cancer or any other ailment or affliction, have faith that you can win, because you can. Don’t fear being wrong about things unseen, including God. If you end up being wrong, what have you lost? Especially when weighed against what you have gained. The human body has amazing potential, but only when it is led by the head and the heart. Risk it! You will be rewarded, whatever the result.

PSA in Spokane

We had our first appointment in Spokane, WA this week with some new blood test results. The PSA went up slightly to 2.8 and the AlkPhos was up to 49 from 39. Not really a significant rise. Overall, good results. I was able to stay Wednesday night and get my Lupron and Pamidronate on Thursday. This means I won't have to make another 3 hour drive to Spokane until November 10. I have been feeling pretty good and have had less fatigue. The pain has been much better, too. I still struggle with insomnia, but I feel like that is improving little by little. Hope all is well with all of you.
Talk to you soon!
Brian.

PSA? What PSA?

We traveled to Salt Lake for an appointment with the Oncologist that we had seen previously. I was able to have blood drawn, get the infusion for the bone strengthener (Pamidronate), and get set up with an Orthopedic Oncologist and Radiation Ocologist. I had my infusion on Thursday and got my PSA results back. Drumroll please.... 1.6!!!!! With an Alkaline Phosphatase of 39! These are the lowest scores in recorded history!! (for me) To say that we were stunned and excited doesn't even begin to tell the story. We believe that it is a combination of the Ketoconozale, Pancreatic Enzymes, and a gift from God. Throw in some strict dietary restrictions and other parts of this protocol and we think we are making some progress. Last month the PSA went from 21.3 to 14 so this is the second month in a row of substantial decline in PSA and AlkPhos. Very good signs. We are hopeful that it will continue. As others who live month to month by lab results know, things can change quickly, but we are establishing a good pattern. Thank all of you for your thoughts and prayers. It is working and we are constantly aware and reminded of all of our beautiful friends.
One note of sadness...
We have just been made aware that our good friend Ellsy, that I had treatment in Reno and Tijuana, passed away. Her, and her husband Ron, were the ones responsible for throwing me my 40th birthday party while in Mexico. Ellsy is on the far right of this picture. She was one of the bravest people I have ever met. Through pain and tough times she always had a smile, a kind word, and thoughtful support for everyone she met. She fought hard and testified of her love of the Savior. She was, and always will be, a true inspiration to me and my family, as well as many others. I want Ron to know that she is loved and will be missed greatly. I have the deepest love, admiration, and respect for both of them and wish Ron all of the comfort that God can grant him. He is a true gentleman and Ellsy was a beautiful lady.

All my love,
Brian.

Slow, but sure...

We finally have gotten a handle on the treatment program. I was able to go fishing today with Bruce, my father-in-law. The fishing part wasn't what we hoped for, but I was able to leave early, take all my supplements with me, and stay out until 4pm with no problems. Being able to stick with this program exactly, but still have the freedom to do the things that I enjoy made it a great day. I will be looking forward to many more. Hopefully, with a few more fish!

B.

Treatment or Disease?

Treatment or Disease?

I had sort of a bad night last night. I felt okay and didn’t have any pain. I just couldn’t sleep. It has become apparent that the Hydrocodone that I needed for pain management has become physically and/or psychologically important for a decent night’s sleep. That, in and of itself, is not a big problem. The tough part is that part of my enzyme therapy is a fairly intense detoxification. So if the meds are not for pain, I need to get off of them. I decided that last night should be the night to start. I lay awake until about 3 am, unable to sleep. If it was just insomnia, that would stink enough. Instead, I get a very intensely uncomfortable and restless feeling in my arms and legs that make it impossible to lay still. I start to fidget and end up fairly miserable. That is where the fun really starts. As I get increasingly more irritated that I can’t sleep, all the other injustices start to flare up. This program that I am on is very structured. Pills, juices, saunas, and other less delicate parts of the protocol take place between every half hour to hour throughout the course of the day. While just drinking a vegetable juice or swallowing a handful of pills doesn’t sound obnoxious and exhausting, take my word for it, it becomes that way. When your day becomes a steady stream of “have to’s” and very few “want to’s”, it becomes easy to dread the arrival of a new cycle of treatment. It makes you look forward to a night of uninterrupted sleep. When you can’t have that, ironically because of another pill, it can make you a bit agitated. I am being descriptive about this not because I want to upset those close to me or to garner sympathy. My wife dedicates her day and her life to the preservation of mine. She works tirelessly day after day to make sure that I have the pills, the juice, or anything else I need. The only time she complains is if I am trying to do more than I should instead of saving my energy for healing. So, I wondered what I was trying to say. I almost wadded this up and threw it away as I got to this point. Then I remembered why I decided to start this blog. To share my experience in the hopes that others would be able to relate and find hope. I know that I am not unique. Others have cancer. Others have afflictions, sickness, and trials. Others lose hope and are not sure where to find it again. Others have treatments that are far more invasive and harsh than what I go through daily. Sometimes, in down moments, the treatment seems like a bigger pain than the disease. That is where the support is really needed. Not only to support you through the disease, but to distract you through the treatment. Sometimes you wonder’ “Will all this effort pay off?” and “Am I using the last time I have left on a ridiculous wild goose chase?” I won’t know the answer to that until it works or it doesn’t. If your child was on a bike and about to be hit by a bus, would you only leap to save him or her if you knew the outcome? Of course not. Life or death decisions call for a leap of faith and to believe that it will work out. One way or another. What I have found is that each person can’t be all things to you. My wife, Florence Ratchet (part Nightingale and part Nurse Ratchet from “One Flew over the Cuckoos’ Nest), not her real name, is dedicated to taking care of me. Sometimes she has to nudge me in the direction I need to go. My Dad, my kids, and my brothers are there to distract me and make me laugh. My Mom, Mom-In-Law, and my sister support me and my wife in whatever way needed. They are not all things individually, but together they are everything. It boils down to why you want to overcome the situation. With mine, it is because I will always do all I can to show my children that life is worth living. It isn’t easy sometimes, but the good times far outnumber the bad. The hard times fade after you move through them. If this wasn’t true, mothers would never have more than one baby. When I get stuck in a dark place and wonder if the treatment is worth the cure, I look at the effort of my wife and kids, the love and support of family and friends and realize that sometimes they know better than I do. I just need to put one foot in front of the other each day and know that I will look back at this someday and have one hell of a story to tell.
PS – I feel a lot better this morning. :)

Awake from my Siesta!

Sorry for the delay between posts. We have relocated to Montana to work on this Enzyme Therapy. I have been on it for about 4 months and have seen the progression slow to almost a stable condition. It is only a 3 month window, so we will have to be patient and continue to work at it. It is, however, reason for hope. We have started with a new guide on this journey with our enzymes and feel that she is the right one to help. She has a very structured program and leaves very little to interpretation. As any of you who are on this same path know, that is a huge step in the right direction. My PSA dropped from 21.3 to 14 after the radiation was complete. That is not unusual, but with the stable bone scan, before the radiation, we feel like we are stringing together some good signs. I am going to post how this therapy works later tonight or tomorrow. Hope all is well with all of you!
B.

Finally!

Good news. Finally. I had my Bone Scan and CT Scan today along with radiation. I was able to get my results on the CT Scan and it showed a decrease in the area around my bladder and prostate, a shrinking in the lymph nodes, no further activity in the bone, and no change in the nodule on the lung and liver. The liver lesion is now noted as a low-attention indeterminate lesion, which according to this test, is most likely, not cancer. It still could be, but is less likely. This is compared to the scan 3 months ago. I was on Casodex the first month of that, but after, only Lupron and the Pancreatic Enzymes from the Kelley Protocol. It is still too early to determine if the enzymes were the cause of the static condition, but it is great news that it has not progressed in the last 3 months. I appreciate all the thoughts and prayers and believe that it had a great impact on my recent scans. Thank all of you very much! We will continue on the Enzymes and the juicing in hopes that we can continue our progress. We are on the move again to Teresa's mom's place in Libby, Montana. She and her husband, Bruce, are building a Yurt. Look it up, it's pretty cool. It is like a round heavy duty canvas cabin. We will be in closer proximity to Huntsman Cancer Institute in Salt Lake that has the newest treatments for Prostate Cancer. My Mom and her husband, Mack, have been very gracious hosts to us over the last 3 months and my brothers, sister, Dad and his wife, Linda, have been awesome. They have made a way to accomodate every need and it will be difficult to leave them again, but we are confident that this will be the environment and the location we need to finally get in front of this thing. We will be leaving in about 2 weeks and will continue to post from there. It is hard to keep moving, but our flexibility is our friend right now. I will have the PSA and final Bone Scan report next Wednesday. Fingers crossed for results confirming today's good news.Brian.

No Pain!

I started radiation on Thursday and had a lot of pain Thursday, Friday and Saturday. I spent much of each day in bed. I don't know if the radiation made me so tired, if it was the pain, or the pain killers to alleviate it. Today, I woke up and felt much better. The pain in my hip is almost non-existent. It hasn't felt like this in weeks or months. Funny how the absence of pain makes you so happy. I took that for granted for a very long time. I am hopeful that this is a new and on-going development and not just the eye of the hurricane. I think we will do something as a family today and get out of the house. I had to reschedule my bone scan and ct scan for Friday July 2, so we will see how that goes next week. I hope all is well with all of you and my prayers are with you. I have posted a new writing on the tab above today for all that are interested titled Acceptance and Humility.
All my best.
Brian.

Today's Doctor appointment

Back to the oncologist today to discuss the latest blood test results. PSA has risen to 13.7. This was after being on Casodex for a month and then off of Casodex for a month on withdrawal therapy. The cancer seems to be completely Hormone Independent. The next step will be to search for the availability of Provenge. This is the newly FDA approved Prostate Cancer treatment. It is only offered in a few places and generally has a waiting list. Once we find out if I can get this treatment, I will go on Ketoconozale with Hydrocortisone. I can’t do these at the same time, so I will only do the Ketoconozale if I have to wait on the Provenge. The next step would be Chemo. I will see the Radiation Oncologist tomorrow to map out radiation treatments for my right hip which has grown increasingly painful over the last 2 weeks or so. I also will get a Bone Scan and CT Scan on Thursday and hopefully will have preliminary results on Friday. Say a prayer that the “indeterminate” spots on my liver and lung are unrelated and have not changed or grown. Those are big concerns. We will continue to search and fight. I am still working with the Kelley Pancreatic Enzyme Therapy. We will add some of the juices from the Gerson Therapy, also. Some may call it denial, but it is only denial if you quit fighting and hope you get better doing nothing. We are hoping for big improvements, by working hard. Hope all is well with all of you.
Brian.

Why I Try

Through this treatment of cancer, it is always interesting to talk to and correspond with others going through similar trials. For every patient, the treatment varies slightly. Even though conventional treatments for cancer follow a well defined and researched path, patients always put varying degrees of emphasis on spirituality, diet, nutrition, supplements, attitude, outside support, etc. What also seems to vary is the desire to fight and the reasons for it. Some that have lived a long, full life may have an acceptance of their disease that others, stricken at an earlier point in their life, refuse to acknowledge. With 2 young children and a dear wife trying to juggle these seismic changes, I put myself in the latter category. Some diagnosis, regardless of age, are so dire that it leaves few options but to “put your affairs in order”, hope for the best, but prepare for the worst. Again, while I am not having much fun with my diagnosis, I do have the luxury of options and time. Time to reflect. Time to research. Time to repair. Time to Fight. It is too simplistic to say that I fight for self preservation or fear of the unknown when this life is done. Of course, those things are true. My faith allows me to worry a lot less about life after this one, but it also teaches me that this life is precious. Something to be defended and protected. I think the biggest reason of “Why I Try” is the love that I have for others and the love that they have for me. If the last example I can leave for my children is that I would not give up, not doing as I say, but do as I do. Sometimes the victory isn’t always only in the outcome, but the dignity, grace, and valor of the battle. I want my children, my wife, my family, and my friends to know that I love them enough to fight with every ounce of energy to win this war and remain with them until God calls me home, not just until it gets too difficult. The love and support given to me give me strength to try new treatments, as alternative as some of them are, because if there is a chance, I owe it to myself and all of you to endure to the end and make this life all it is supposed to be. When my time is up, I will know. It’s not my time. That is why I try.

Its been a little bit since I've written. Since my 40th Birthday "Surprise" Party, I had to fly out to Salt Lake for a couple of days and then we went to Florida for a week to visit some good friends and do a little fishing before the dreaded oil slick makes it's way around the state's beaches and reefs. All of us were able to catch up with some great people that we truly miss from our time there. We have kept ourselves busy and so far, I seem to be holding up pretty well. The party was a great success and meant a lot to us. It was so nice to see family and friends, some that I had not seen in quite a long time. I thank all of you from the bottom of my heart for taking the time to be a part of that celebration. It meant a lot to me to visit with all of you.
On the treatment side, the PSA continues to climb and went to 9.9. This was up from 7.7 only 2 weeks prior. The doctors decided to stop the Casodex that I was taking. Casodex works with the Lupron to eliminate testosterone production. It primarily targets the adrenal gland production. By stopping it, they hope to confuse the cancer and slow it's growth. This works in some people for 1-3 months. If it does not work, or when it stops working, we will be on to secondary hormonal therapy. Chemo is still in the picture, but we will try other things before we get to that. The new treatment, Provenge, will likely be tried before we get to Chemo, as well. We were looking at radiation on my right hip, but it surprised me by not hurting nearly as bad as I thought under a good test of fishing and playing golf in Florida, so I hope to keep from going through that until winter. We continue the dietary restrictions and Enzyme Therapy, but won't know for a few months about the results. If my energy and lessening of pain are any indication, the results are very promising! Sorry again for the long break in updates. We intend to enjoy every minute of this summer and sincerely hope that you will all do the same.

All my love,Brian.

New Spin off Blog!

I have been writing some things for my kids lately that talks to them about what I think is important in life. Some that have read them have told me that these writings may benefit others as well. Since it would be hard to manage this on the same blog, I will be posting them on a sister site, http://allthatiwantforyou.blogspot.com/ . It is also listed as the first link on this site. It will just be essays of these writings as I put them on paper. I hope that they will assist some of you that travel the same or similar path as I do. My intent is not to be preachy or all-knowing. It is just to let people close to me understand my thoughts on important life issues.

As always,
thanks for reading.
All my love,
Brian.

Chicago

Teresa and I went to Chicago last weekend to see a Cubs game. I have been to Fenway and old Yankee Stadium with my brother Greg, but never had seen a game at Wrigley. We had great seats and it was a lot of fun to see that stadium. I also made it out to see Mark Knopfler (former lead singer of Dire Straits) with my buddy Dave. It was a great show. Dave and I used to see every major concert that would come through St. Louis, but hadn't seen a show together in 20 years. Both were a whole lot of fun! I still firmly believe that we can beat this thing, but I know it is a difficult path. That is why I stop and smell the roses, or see the concerts, or even go to see a Cubs game that the Cardinals are not playing in. Procrastination doesn't work for me anymore. If the opportunity arises for something I have always wanted to do, within reason of course, we find a way to do it. We are in the process of switching up our treatment plan. I have an appointment with the Oncologist today followed by a Pamidronate infusion for the bones. This will factor in to where we are headed, but we are already starting to pursue an enzyme therapy that is showing good results for others. Nothing else is working, so the search continues. We feel good about this approach and, while there are never guarantees, we believe that I can be healed. We just need to align a few stars and planets. This treatment can be found by googling Dr. William Donald Kelley or the Kelley Therapy. Dr. Nick Gonzolas uses a similar one in NY, but this is the original and the real deal. We will also add the juicing of many vegetables to this for an assault of good nutrients and enzymes. The idea is to put my body in the strongest position to fight. The Kelley enzymes remove the protein shield from the cancer cells allowing it to be recognized and attacked. We are also praying very hard right now. Spirits are generally up, along with the pain in my hip and back, but many others have been stabilized or healed. No reason to think I can't join in the fun. We will also talk to the doctor today about Provenge. Some of you have sent emails about this newly approved treatment and we are excited about it, too. Unfortunately, it only provides a delay of about 4-6 months, and not a cure. But if we can use this delay to allow other treatments time to take hold, maybe we can spin it into a real miracle. I will post tomorrow about the results of todays appointment. As always, take care. I love you all and will post soon.

PS - For those interested, the News and Exciting Developments tab of this blog have an invitation to a party on Saturday May 8. Any and all are invited. I hope some of you can make it. Just email an RSVP to brianpca4@gmail.com.

B.

Last week was a little trying. The residual effects from the surgery continued to make it difficult to sleep and generated a fair amount of pain. The pain killers worked pretty well, but made me very tired. The last couple of days has been much better. The pain is letting up and I slept really well last night. I still have the pain in my hip and back. Sometimes it is a dull ache, but other times it can be an uncomfortable stabbing pain. Fortunately, for now, it is of the dull variety. I did get out yesterday and did a little fishing in the rain. Didn't catch anything, but had fun anyway. The distraction and reduction in pain helps my mood and view dramatically. I will go back to the doctor tomorrow to follow-up on the surgery. I expect that things will go well as the symptoms have decreased alot lately. Then on May 4th, I go back to the oncologist for blood work, etc. I will have to talk to her about the direction we will go for the advancement in the bones. Hope all is well with all of you. I will post more early this week.
B.

Bone Scan

We finally received the bone scan comparison and it is not as good as we hoped. The cancer in the hips, sternum, and spine has continued to grow and spread. It has moved into my right femur as well. We are looking at a few options and will know more soon. Sorry for the brief update.
Bria​n.

Little bit of a whirlwind over the last week or so. We met with the Surgical Urologist on Monday April 5th and he recommended a procedure called the GreenLight Laser. It is usually for Enlarged Prostate to alleviate constricted urinary symptoms. We decided on Wednesday April 7th. I went in to Barnes-Jewi​sh Hospital early on Wednesday and the procedure went well. The Prostate wasn't as large as they thought it might be, so there wasn't as much roto-rootin​g as they planned. Kind of a good news, bad news thing. The tumor has spread to the bladder and looked like an enlarged prostate, but really it is just one area encompassin​g both. They used the scope to determine that the cancer had not penetrated the bladder wall from the outside in (good news). The biopsy on that tissue should come back early this week. I ended up with a catheter and had to spend Wednesday night in the hospital. Miserable. I was very happy to be paroled the next morning. It stayed uncomfortab​le for the next few days, but seems to be getting better each day. I am writing this at 3:45 am because my hip and back pain have returned and even with the pain meds, I can't sleep. I'm hoping this is a temporary problem. I did receive the Lupron injection on Monday April 5th and will know in the next week or so if it is helping or not. Also scheduled for a bone scan on Monday April 12th. The CT Scan said that it looked like the bone mets had increased so the bone scan should answer that definitivel​y for us. A prayer or two on that one would help. Things seem to be settling down on this treatment, but that test is a game change​r if it isn't good. All for now. Hope all is well with all of you. Will post bone scan results as soon as I know.
Brian.

Maybe good news???

I talked to the Nurse today and she said the comparison on my latest CT and my baseline CT was complete. There is some thought that the tumors in my prostate and the lymph node involvement in my pelvis may have decreased from the baseline. But, the CT seems to show an increase in bone mets and confirmed bladder intrusion and lymph nodes. She said we really need to wait for the bone scan on April 12th because it is like comparing apples and oranges on a CT to a bone scan. To me, this might suggest that the liver lesions and the lung node may have been there last November, since the abdomen and chest were not done then. If the other stuff decreased, I don't think the liver and lung would progress. But not sure about that one yet. I will see the Doctor again on April 5th. We were just happy to get a test result that might be good instead of another one that wasn't. I re-started Casodex yesterday and will test the PSA in about 2 weeks to see if it is working. If not, we will move to DES or Ketoconazole and Hydrocortisone. These are hormonal treatments that have been around for awhile and continue to work well for some people. We are also looking at a new drug called Provenge. The Doctor is trying to deal with the treatments with the least side effects first. As we go up the ladder, the side effects increase. After these treatments we will likely be looking at chemotherapy. All in all, I choose to look at todays news as a good sign. One of the first in awhile. We continue to look for more and pray for ourselves, all of you, and all who struggle with this disease.

Thank you for your thoughts and prayers!
Brian.

CT Scan and Blood Test

Well, if 3 tests makes a pattern then Houston, we have a problem. My PSA tested at 6.9 and has been steadily climbing for the last month. I re-start Casodex today and hope for a bit of a reprieve. The CT Scan results were also less than encouraging. Lesions were noted on my Liver and a nodular tumor was seen on my lung. This may have been here all along, as we did not have an abdominal and chest CT the first time around. They will know more in 3 months when they can measure whether it grows or shrinks. Either way, they will call it officially cancer. If you have never seen a grown man fighting tears in front of a Pasta House Restaraunt, you may have missed a golden opportunity. Between my testosterone at 7 from the Lupron and this nonsense going on, its a wonder I'm able to hold it together at all. My Dad is picking me up tomorrow morning for a Father-Son Fun Day. I don't know if I have ever needed one more. My friends, family, and new friends that I have met from this are the reason that I continue to keep myself together enough to keep looking for new solutions. As much as we look for creative solutions to battle this disease, we have to find new angles to pick ourselves back up, dust off, and fight some more. It wears on you. I realize now that cancer doesn't just steal time and take people too early, it tries to steal the time that you have by being an all consuming beast that won't let you live the life you still have. We continue to soldier on and are very thankful for all of the blessings that we have been given and wish all of you everything that your heart desires and pray for health, happiness, and love for all of you.
Brian.

What to do?

The last few days have been tough for us. My last couple entries have been a little clinical, because I don't know what to do. I have read about a few people my age with Hormone Refractory Prostate Cancer and they have battled and continue to battle this disease with every weapon in the armory. I intend to do the same. I won't and can't give up. That doesn't mean I don't feel despair sometimes. Lately, I do. The hormone therapy was supposed to buy me some time, but now appears to have run its course. My wife and I attempt to comfort each other, but lately, we are not sure how to comfort each other. We are both trying to fight this in different ways. She feels helpless to stop this speeding train and does not want to be left alone. I am not sure how to comfort my soulmate who may end up pulled away from the one she loves. How do you tell her it will be okay, when at least for awhile, it is possible that it won't? How do you tell her to keep the faith that we have worked so hard as a family to cultivate when her heartfelt prayers go unanswered? How do you convince her that our small family needs her more than ever? How do you assuage her unfounded feelings of guilt that something could have been seen, a sign missed, that would have directed us down a path towards earlier discovery and healing? I suffer with advanced cancer that could end my life much earlier than I ever expected. My wife suffers with the possibility of losing the person that she wanted to spend the rest of her life with, not just the rest of my life with. I want her to know, and maybe some of the other spouses of cancer to hear, that my heart breaks for her pain. I want her to understand that now is the time to build memories, no matter what the outcome of this is. We have the benefit of looking at life as a tangible, finite phenomenon. Something to be cherished and enjoyed. The most important things are not the things, but the experiences that build the memories. I keep this journal for her and my children. It is possible to fill their hearts and souls with meaningful memories, even in a shorter time. The quality of our time together has to be enough. Rest assured, I in no way, will be satisfied with quality. I want quantity, too. But I know that it is not guaranteed for me anymore. This has to be a collaborative effort. Neither of us can do this alone. Her faith in God fulfills the promise that we have made to each other and to God that our family will be sealed and will always be a unit, even beyond our time here. Her love for our family has to be sufficient to show our children that my love for them is eternal and will last even if my physical body cannot. Our children are a beautiful product of the love we have for each other and will always have for each other. If one of us doesn't get to stay and see it through, that will never change. Our Father in Heaven's love is forever, and we are made in his image. We have the advantage of hindsight in our treatment and diagnostic choices in this journey. The downside is that it is easy to reflect on choices made, and wish that you had chosen other paths. There is no benefit in that, other than to lend the experience to others to aid in their decisions. My wife feels responsible for some choices made. I have never questioned her love and devotion to me from the first time that she told me that she loved me. How can I even consider that any decisions that we made together or information that she presented to me were given with anything less than that same love and devotion? There are no second guesses here. You take the best information at the time that you need to make the decision, and you make the decision. I have no regrets. I love my wife and have complete confidence in her. She does not have an ulterior motive in her whole body. I trust her with everything that I am, everything I will be, and even what I may never have the opportunity to be. The best decision I ever made was made on June 22, 1996.

New Developments...

Last couple of meetings in Salt Lake and then we are heading back to St. Louis tomorrow. I had an appointment at Huntsman Cancer Institute on Friday for a follow up Lupron shot and blood work. My PSA had risen to 3.2 from 2.14, but we were hopeful that the Lupron shot would knock it back down since we thought we were due for one. Unfortunately, I had received the 30 mg shot, which is a 4 month dose, instead of the 22.5 mg shot, which is a 3 month dose. So my PSA was rising after 2.5 months on a 4 month injection. Not a great sign. So I did not get the shot, but they drew blood for testosterone, PSA, and Alkaline Phosphotase. Alk Phos was good at 65, and testosterone was at 7, so Lupron was working fine. The bad news is that my PSA had risen again to 4.9. This indicates that I am likely hormone refractory, which means that the cancer is growing independent of the testosterone. I will follow up with doctors at Siteman Cancer in St. Louis, but it is very likely time to look at new options. I knew this would happen eventually, since the Lupron is a temporary remission, but I thought I would get closer to a year instead of 2 or 3 months. This is a very aggressive cancer. We are doing about as well as could be expected with this. Still putting one foot in front of the other and always one day at a time, but I feel like I am on a speeding train with no way off. It only takes one piece of good news to break this pattern of tough news, and I am ready for it. I need it to warm up so I can go fishing.
Love always,
B.

Leaving San Diego

Tomorrow we head back north for a few days and then east. I finished the clinic part of the treatment on Friday, tied up some loose ends on Monday, and will be leaving. It is too early to determine the success of this treatment and I will continue to give myself IVs over the next 2 months in anticipation of my follow up. Dr. Munoz seems to think we are on schedule, but we will know more after the treatments have had a chance to show, through the labs and scan results, where we are. I have met so many great people here. Some of them have gone home already and some continue to be treated. It has been a source of inspiration to me when I needed it most. Sadly, we had a dose of reality while I was there, also. A man named Bill who had advanced Liver Cancer passed away at the hospital in Tijuana while I was in treatment. I didn't get to know his life away from cancer much, but he was a "Comrade in Arms" for about 2 weeks while I was there. He had a great family and I know he will be missed by many. I will miss many that I met there and I won't name them only because I am sure I would forget one, due to my memory and not their impact, and they are too important to me to take the chance. My next step will be to Salt Lake City (Huntsman Cancer Institute) for a few days to renew the acquaintance between Lupron and my backside. Then, off to St. Louis where we will take up residence in my Mom's basement. We have spent a lot of money working to overcome this and need some time to get back on our feet. I thank my Mom for the accommodations. I am not proud that we need to start over again, but grateful that I have family that will help us. My wife says that some people our age get divorced and start over and that we are divorcing cancer. That thought has helped me transition into some of these changes. I am telling you about this because I don't want others to put pride before treatment. It is a hard thing to do when you are used to living your life on your terms, but the hardest thing for me is to allow others to help me. If you are in a similar circumstance, please allow others to help you get strong. My goal is to use this experience to help others. That is why I share everything I can, but just like on the airplane, you have to put your oxygen mask on before you can help others with theirs. I will write more when I can, as we are traveling. But please know that all of you are in my heart and mind, always.
B.

Treatment Update

We met with Dr. Munoz yesterday and if all goes according to plan this week with my blood tests, I will be finished with the treatement here and taking IV treatments home with me. I will keep the port in my chest until I no longer will need multiple IVs daily. The blood work looks great and he is convinced that I will be in full remission in 3-4 months. Staying there is the wild card. He has had great success of keeping people in remission when he can get them to it, but many factors play a part. This is just how my life will go from here, but I will absolutely enjoy it. This week we will practice mixing the IVs and administeri​ng them with the nurse's supervision so we are ready to take them home. We will not go directly back to St. Louis as I am working on some things that I will post about later today or tomorrow. Very good things that will be a part of our life to come. Not to be mysterious, but I need to explain it correctly. We have loved the people we have met here and will stay in touch with many, but it is definitely time to move on to the living part of life again. There are some who live in the San Diego area that have reached out to us and I apologize for not being able to get to some of you, but know that your thoughts and offers of help are greatly appreciated.​ I always feel that I will have more energy and time to take them up on these offers, but the limited time after treatment flies by with some of the other things we have going on. Right now, I am very happy with the treatment and direction and am starting to understand how things will go from here. I am very excited to begin this new chapter and appreciate all of you more than you could ever know. Between those of you that I speak to on the phone and others that express you thoughts here, this experience has taught me more about what is important than any other time in my life. I hope that it has helped some of you see things a little differently​, also. All my love to you and I will talk to you again soon!
Brian.

Treatment going well

It has been a week since my last entry. Sometimes it seems that not much is happening, while at the same time, change marches on. Teresa and the kids arrived on Monday night. It was great to have our family back together again. I knew I missed them, but I realize how much when they are back with me. I think their return is pushing me into the next phase of this "Life Adjustment". I think at first it was shock, then despair, then anger at the cancer, then a brawler attitude that made me want to lash out and kick its butt. Now, as I push through this initial treatment, I am moving towards trying to figure out what I will do with myself in the "New Normal". Will I work? What work will I do? What will the change in priorities that something like this causes do to impact my family's future? On one hand, I fully embrace the new perspective that I have been given, on the other, I miss the life that I had to leave behind. Most of the time, I feel like I need to hold on to the things that cause positive life changes and put the rest of the crap on the shelf for awhile. I'm not angry at it, I am just ready to move on and live my life. There are definite positives, including the people that I have met through my blog, and I choose to dwell on that. When we leave San Diego, we will moving back to St. Louis. The truck is loaded and on its way. It will be great to be near my family again, just as it will be painful to leave family and great friends in Salt Lake. This is a time of great transition for us. Starting over again, but with a new set of rules. I feel a lot like this post today. Happy with the overall progress, but disjointed and out of sorts with some of my current situation.

PS-Birthday Stuff

PS - I added a picture today. When I walked in about 11 am, I said hello to everyone and they said hello. I found a chair that mysteriousl​y was empty, even though the room was packed. I sat down and they hooked me up to the IV and everyone started blowing whistles, really loudly! Then about 30-40 of them started to sing Happy Birthday and brought out a big cake with icing balloons on it. We, of the Sugar Resistance Movement, only took tiny slivers, but the family and staff ate the cake up. It was a great birthday surprise from some really good friends. Special thanks to Ron and Elssy for getting the cake and setting up the clever ruse.
B.

Big Day Today!

While I never thought that my 40th Birthday would be celebrated by IV’s and injections, I don’t think it is a bad thing. Not only investing in what we hope is a very lengthy remission, but also if I can’t celebrate with family and other friends, the people that I have met here and in Reno are the closest thing to it. Their positive attitude and spirit help me to see light at the end of this tunnel. The focus that these people have in being able to now set aside the trivial and lock in on their treatment and what is important in their lives has taught me as much as I have learned medically about Prostate Cancer. There is a right way to live your life and they understand it. I have told some that I am not emotionally mature enough to be able to call this cancer a blessing, but I can easily recognize the blessings that have come from it. Most of the blessings r​ead this blog.

Last year I wondered what it would feel like to turn 40. I thought at the time that it was just turning another page, albeit a thicker one. I did think on some level that it was a milestone and I felt that some part of my life had passed, never to return. So while I wasn’t necessarily feeling my mortality, I felt that I was progressing into an older, not necessarily wiser, stage of life. It made me feel how quickly my life moved and amazed me that I have an 11 and 9 year old, and have been married over 13 years. As I look at what this 40th Birthday means to me today, it is very different. I thank God that I have been able to do the things I have, watch my children progress from infants to very distinct personaliti​es, and to get to know all of you. I don’t worry today about my age or growing older. I pray to walk Sarah down the aisle. I pray to see John take a wife. I pray to see grandchildr​en. I pray to grow old with my wife and kick kids off of my lawn. I love my life today and getting older isn’t a curse. In short, I pray for the opportunity to grow much older. Every positive test result gives me hope that I will do just that. I believe in this treatment and this doctor and see positive results daily in many of my friends receiving treatment.



On the medical front, I found out that my sialic acid is very high (190), as to be expected. This would indicate that there is a large amount of cancer in my body. But I knew that. The PSA and AlkPhos seem to show that it is not very active right now due to the Hormone Blocker. This was drawn before treatment started, but takes about a week to culture the sample and get the results. I will be receiving the Neo-Springe​r Vaccine (See Link under San Diego Clinic, Treaments) on Monday.
​Explanation of Sialic Acid –
Carcinoma cell (cancer cells) are covered with Sialic acid (which also serves as a carcinoma marker for diagnostic purposes) and this helps hide the cancer from the immune system. Sialic acid is not particularl​y immunogenic.​
T/Tn antigens (Neo-Spring​er Vaccine) covertly attach to immunogenes in order to induce an immune response. The body then goes after the cancer with a vengeance.
​

I will be meeting with Dr. Munoz on Saturday and hope to get the rest of where he thinks we are headed with treatment, now that he has seen all of the baseline bloodwork.

​

Thanks for reading and humoring this newly 40 year old!

Brian.

Let the Games Begin!!!

Today I will begin a new phase of my treatment. I will start the Dendritic Cell Vaccine/Immunology. To say that I am excited about this would be a huge understatement.

Here is the description of the Dendritic Cell Treatment:

Dendritic cell vaccine - this autogolous vaccine (vaccine from patient’s own blood) isolates the dendritic cells which are then cultured in a lab and trained to identify cancer cells. This process stimulates the immune system and NK cells to destroy cancer cells.

You can Google this treatment, also. It has undergone clinical trials in the US and has been awaiting its final approval from the FDA for over a year. (Snide comment)

Up to this point, we have been strengthening the bones and building up the immune system, but this is where the work and the fun begin. My treatment will not include chemo, so overall; I should feel pretty decent through this. I will continue Hyperthermia each day this week and then go to 3 times per week starting next week. Next week we will add some of the other treatments to the regimen, in addition to continuing immune system strengthening.

There is a man here with Colo-Rectal cancer that was told that there was nothing else that could be done for him by his oncologist. He has been here for 8 weeks. Yesterday, Dr. Munoz informed him that his tumors have shrunk by 30%-40% on the CT Scan and continue to show improvement. He will get to go home to continue treatment and come back in 2 months for a follow up. His main discomfort is the scar tissue that built up from his radiation treatments, which were ineffective. (Snide Comment #2)

Please understand, I do not disapprove of conventional treatment. Chemo, surgery, and radiation have its very important place in the treatment of cancer. I believe that these are radical treatments that must be exercised with the utmost care. Cancer is almost universally regarded as a breakdown of your immune system at some point in your life. It can be caused by many things, including genetics. The way to improve your odds and quality of life is to sustain your immune system and use these harsh treatments sparingly. Some well-meaning doctors follow the cookbook, and forget the simple fact that we can’t cure cancer, yet. But the human body, in optimal condition, defeats it every single day, in every human body. Enough ranting, sorry…

----Last thing. I want everyone that reads this blog to know that I appreciate your concern for me and my family. This experience has shown me what a blessing my life truly has been. Even some that I do not know as well have taken the time from their lives to make sure that everything that is needed has been taken care of. Friends that I had fallen out of touch with have reached out to me with the care and concern of close friends that I thought that I had lost. I have learned valuable lessons from this trial. Lessons that have forever changed my life and perspective. I only have you to thank for this. I hope you get the feelings of a good deed performed, because all of you have truly inspired and bolstered my family in a very difficult time.

My love for each and every one of you!
Brian.

Blood work on Friday

I met with Dr. Munoz on Friday to review my blood work. PSA has dropped to 2.14 and my AlkPhos has dropped solidly into the normal range at 110. This is all very good news. He believes that I will only need to be treated at his clinic for 4 weeks and then he will send me home with treatments that I can administer myself. I will have to keep the IV Port in my chest for awhile, but I don't notice it that much anymore. All in all, good news. I went for a drive today and ended up in LA. Why does LA have traffic all the time? Don't these people ever go home?

All for now. Will post again soon!
B.

Treatment options

I have been emailing a man with a similar diagnosis, Ivan, in Australia recently. Even though I am relatively new to this stuff, it has given me an opportunity to learn and share experiences that have proven to offer support to others. For that, I am profoundly grateful. It doesn't matter where you are in this process. The thoughts, emotions, and hope are of value to anyone who chooses to look at why we are similar, instead of why you are unique. The "Point of the Post" today comes from my conversation with Ivan. While I am doing conventional treatments, I have placed my hope in predominately alternative. Conversely, David Emerson (Big C Blog-See Links) is doing some alternative (nutrition, etc), but is predominately conventional. David is over 5 years from advanced prostate cancer diagnosis and is doing well. I have met many that took the alternative route and they are doing very well, also. That is why I believe that this is such an important, individual decision to take ownership of your treatment plan. Whether it is Cancer or any other ailment. Knowledge is Power. Research helps you to ask the tough questions. Talking to others that you find to have similar circumstances give you real world information and can help you determine your path with confidence. Sometimes the prognosis is a little disheartening, but even if they tell you that there is a 30% survival rate for 5 years with advanced prostate cancer, 30% is not just a number assigned at random. It represents people like us. People with lives and families. A .300 Batting Average could land you in the Hall of Fame! Look for the similarity, but don't be afraid to blaze your own trail if your heart guides you.
My best to all!
Brian.

Tuesday - Day 2

A little more on the Hyperthermia Treatment-

The Hyperthermi​a treatment consists of a bed like a tanning bed, but instead of a lid that pulls down, it looks like a range hood over your stove. Reflective pads are velcro'd to the sides and the front down to the middle of your chest. So your upper chest and head are not in the "box". You only wear a hospital gown and they put 2 sheets over your whole body in the box so your don't actually start to cook. The temperature inside the box gets to about 110-112 degrees. Your body temperature at your core raises to about 103. You stay in for about an hour. It wasn't too bad, but you feel a little tired for a couple hours after. I kinda liked it. Sort of like a spa, only with cancer. :)

PS- Don't know if it is unbridled enthusiasm and optimism or the treatment, but I feel really good today. Lots of energy, kinda like myself again. WOOHOO!

1st Treatment - San Diego Clinic

Worked out the internet problems this morning. I arrived in San Diego on Sunday afternoon and spent the rest of the day trying to arrange longer term accomodations. On Monday morning, I went in to the Clinic in Tijuana, Mexico for blood work, consultation with Dr. Munoz, and possibly to start treatment. I parked at a Day Lot on the US side of the border. It takes more paperwork and assistance to get into a movie than it takes to walk into Mexico. Getting out is a lot longer (1hr) in line, but still a pretty simple process. I got to the Clinic, filled out the paperwork and Dr. Munoz was able to see me right away. He said that there were only 2 types of Chemo that had shown any ability to do anything with Advanced Prostate Cancer and that he did not think it would be of help to me right now, so it would not be in my protocol, unless something changed. Good news on that. He said he would be using Dendritic Cell Therapy. This has shown great promise at Duke University and other research hospitals.

Whole body Hyperthermia –this treatment enhances the benefits of chemotherapy and has a synergistic effect (killing cancer cells). It also enhances the immune system and assists in detoxification of the body. This therapy is given on a daily basis for the first two weeks of therapy and then adjusted accordingly.

Then for the Cancer in my bones:

Osteo therapy:
- Micalcic (salmon calcitonin) is a synthetic polypeptide of 32 amino acids in the same linear sequence that is found in calcitonin of salmon origin. This therapy is utilized to strengthen bone and assist with metastatic bone cancer. Micalcic is administered by injection while in treatment with SDC. Depending upon the evolution of therapy – the use of this medication may be changed to a nasal spray application (for home therapy program.)

Pamidronate – this is an effective treatment for bone cancer. It assists the bone to recalcify and strengthen. Pamidronate particularly kills cancer cells and has an oncolytic effect.


For Immune Therapy:

Metabolic therapy:


- Selenium IV therapy – enhances lymphatic drainage and immune system function. It also has an anti-cancer effect & stops metastasis.

-Zinc IV therapy – The lack of zinc in our bodies has been implicated not only in the initiation of certain cancers, but also in the transition, progression, and metastasis of the disease. When zinc is deficient, cellular functioning is compromised. Zinc IV therapy is an essential treatment for mineral & immune system balance.

- Artesunate IV therapy - this is a synthetic product from the Artemesia herb. It is known for its anti-cancer activity (it is an anti-cancer antibiotic).

- Polypeptides IV therapy – this is an essential treatment to protect liver, spleen, kidneys and bone marrow from the side effects of cancer treatments.

- Alban solution IV therapy – anti-inflammatory treatment. Alban is a combination of H2O2 and DMSO.

- Glyoxal IV therapy – helps to restore the normal pathway of cancer cells. Re-differentiation therapy.

-Vitamin C & K IV therapy – (apoptosis / antioxidant) produces apoptosis and eliminates free radicals; free radicals produce pain and inflammation.


Immune therapy:

- Mycoplasma vaccine – Autogolous vaccine, eighty percent of cancer cells have been linked directly to mycoplasma. This vaccine eliminates micoplasma and indirectly destroys cancer cells.

Allergostop vaccine – This autogolous vaccine re-programs (modulates) the immune system.

- Neo Springer vaccine – This specific synthetic vaccine targets Sialic Acid which is produced by cancer cells (up to 95%).

- Supplement program – An oral supplemental program is specifically designed to your needs while in treatment at SDC.

-Dendritic cell vaccine - this autogolous vaccine (vaccine from patient’s own blood) isolates the dendritic cells which are then cultured in a lab and trained to identify cancer cells. This process stimulates the immune system and NK cells to destroy cancer cells.

-I will also be receiving GcMaf, a very promising immunology program developed by a Japanese Doctor. I have read about this, and the results are amazing. Dr. Munoz said the results are similar to chemo, last much longer, with no toxicity.

These therapies are from the protocol I discussed with the Dr. at the initial meeting. After he has the results from my labs on Wed or Thurs, he said he may adjust the protocol as needed.

The surgeon came in and installed a port in my chest just under my left collarbone. It is an IV tube that will stay in while I am here. Many cancer patients get them because of the high number if IV's that they get. It saves you from all the needle sticks in the arm. Didn't hurt too bad getting it, but it got a little sore last night. Much better today.

He said that with this system that he strongly believes that I will be in full remission when I leave the clinic. If I follow the regimen, nutrition, and excercise, I can stay in remission for many years. He has several over 10, 15, and even 20 years with similar advanced cancer.

He has had this success with many types of cancer and I met several of his success stories yesterday. Some still being treated, others in for follow up.

Everyone is different, so while I am not sure how the treatment will be received for me, I am optimistic. And I choose to have hope that I was guided to this clinic through your prayers and thoughts. I believe that through this treatment, every possible avenue will be pursued and every treatment investigated and tried. I know in my heart that the good people I have been fortunate enough to be surrounded by for my entire life will be sufficient to pull me through this. I thank all of you for your support and prayers and will keep you up to date on this remarkable treatment.

If any of you have any questions, or know some one that may be interested in this treatment for themselves or a loved one, please do not hesitate to contact me at:
brianpca4@gmail.com. I want to share what I have learned in the hopes that it circulates to all who need help.

All of my love,
B.

Little angry today.

I kind of blew up today. Not in a classic Brian Melt Down kind of way. Those only happen every 4 or 5 years, but still enough to make a pro wrestler jealous. The ignition source was a decision on treatment that my wife and I made. It is to see a Doctor who specializes in Cancer Treatment in Tijuana, Mexico. After a whole lot of research, we feel that this is a move that is the right one. That doesn't mean we are right. In fact, we fully understand that we are looking at options that aren't supported by conventional medicine. The reason we chose this clinic, The San Diego Clinic, is because they are using methods that are basically conventional and have had clinical trials in the US, but have not been approved by the FDA, yet. They also integrate many methods used as conventional in Europe, such as Hyperthermia and Low Dose Chemo. The reason for the decision is that several doctors, at Huntsman Cancer, EuroMed in Phoenix, and a doctor in New York are fairly convinced that the cancer is still spreading aggressively in my bones and maybe soft tissue organs. We don't know this for sure yet, but the bone pain is not letting up much. In any case, even if it isn't, it is time to hit it while it is down. Time to go on the offensive. I wish I knew if this was the right decision, but I will have to settle for it being the best decision. As in, the best one I can make with the information that I have, at this point in time. Modern medicine does move quickly, but not quickly enough if you already have cancer. All of this brings me to my "Point of the Post". I might have to trademark that one. When you have cancer, it affects everyone around you. Friends, family, even casual acquaintances. I can't even begin to tell you the number of people who told me that after they found out that I had Prostate Cancer, they went to the doctor for a physical and told the doctor that they wanted their prostate checked. (Insert San Francisco joke here). I am very glad that it awakened men to make sure that they kept their health as a priority. It shows you the ripple effect that news like this brings. Imagine being a close friend or family member that has just received the phone call, " Mom, Dad, I have cancer." My family had never dealt with anything like this before and there is a learning curve for all of us. The worst kind of "On the Job Training". I don't consider myself a very self-centered person, but when I think about it, it happens. Some of it from necessity, some from tunnel vision while you try to analyze just what this means for you and your upcoming future. So while you try to accept all input from family and friends, it overwhelms you and causes temporary paralysis of the part of your brain that lets you make short and long term plans. You start to question every decision that you make for yourself and your family. You wonder if the plans and decisions are sound due to the mental stress that you are under and maybe even let others make decisions that you should make and you go along with it because you lack the confidence to make decisions on your own. These things happened to me to one degree or another. Not all the time, but some. Your family and friends only want the best for you so they want to help, but you are unable to tell them how. I love my family dearly and I have some of the best friends anyone is blessed enough to have. I think I have set expectations for some of these dear people that they could not have lived up to. They are trying to understand my decisions, but don't agree with some of them. I understand that. We are trying to look into a crystal ball that doesn't exist. I can't depend solely on what modern medicine has to offer, because for me, it isn't much. It damn sure isn't enough. What sounds simple has been a difficult concept for me, and I think some of my family, to grasp. What I, and maybe others in my postion need, is the love and support from those closest to us. During the deliberations, input is asked for and always considered. I don't know everything. I make bad decisions sometimes. But, when the polls close, and the votes are counted, and the decision is made, I need the love and unconditional support of my family and friends. I can't handle the real and imagined voices of "I think that was a bad decision" or "Why would he do that?" or "What are they thinking?". This isn't buying a car, this is life or death. My advice to those that are reading this and have cancer, please have this conversation with your family and close friends. They will understand and be happy that the path is clear for them. If you are family or friend to someone with cancer, please just ask to understand what they are considering, ask what you can do to help them gather information to make that decision, let them make their decision, and then love them and go to war for them to support their decision. This is the hardest thing I have ever had to make decisions on. Many bad decisions can be undone, or if not undone, repaired sufficiently. These types of situations are true crossroads in life. One that it is very difficult to turn back from, whether spiritually, emotionally, physically, or financially. These are decisions that need to be made when the situation forces it, not at the leisure of convenience. Sometimes, you have to make these choices in a matter of days with dire consequence. I have taken longer to pick out a shirt. When the decision is made, that is when the family and friends can answer the question, "How can I help you?" or "What do you need?". The answer is, anything you can do to let them know how much you love them, support their decision, and want to do what they need to bring this choice to fruition. Sounds simple, but in the heat of battle, when love combines with fear, the blinders go on and survival instinct kicks in. Sometimes, just a word of encouragement is all that is needed to turn confusion into confidence. I had this conversation with some that I love dearly and they understood it perfectly. I could not wish for better support from them. Their love for me strengthens me when I need it most. They inspire me to battle this crappy soul sucking disease. They give me hope that I can use their strength to win my battle. They would sacrifice all that they have and would ever have to see me well. I know this because I feel the same way about them. To think, all I needed to do was open my mouth and tell them... Don't wait to have these conversations with the ones you love, cancer isn't even required :) .

Treatment I have been trying...

I have been using MMS, which combines with citric acid to create a dynamic that pulls electrons away from molecules in the cancer cells causing the bond holding them together to be broken. It has shown great success in malaria and other viruses. The possibility is being considered that cancer is caused, and may be, a type of virus. You can read about the science here http://www.jimhumble.biz/ . It is fairly inexpensive and is being tried for many ailments, including the common cold. I have had a couple doctors look at it and they say the science appears sound, but there is not enough data to be sure if it is effective. You can order it here http://www.projectgreenlife.com/cart/pc/home.asp?idaffiliate=5226 . As always, it has not been tested by the FDA and claims not to cure or treat a disease. But, unfortunately, sometimes we have to try things ahead of the curve. I will keep you posted of any results. All for now. Thanks for listening.
B.

This was a mixed week for me. On Monday, I got some labs back that continue to look good. The PSA dropped to a 2.7 and the Alk Phos finally came back down from 242 to 140 (25-140 normal). So while it is still on the high end of normal, it is officially normal. I was very happy with this news until I found out the same day that a very good friend of our family, Kenny, passed away early Monday morning in Florida. My Dad and Kenny were best friends and he had been "family" since before I was born. Kenny was a good man with a great heart. He called me a few times during my treatment in Reno and after to check on me and let me know he was there for anything I needed. I was hoping to see him over the summer or next fall. He will be greatly missed and I hope wherever he is, they serve Imo's pizza and Steak -n-Shake. Love ya Kenny. I also found out that someone I used to work with is suffering from Cancer right now, too. I have spent most of the day worried about him, which takes me out of myself. It's funny how you get wrapped up in the semantics of your own decisions, but if you are able to help someone else by showing them options, it crystalizes your thinking about them and you. It caused some reflecton on my situation. Seems like I do a lot of that right now. I am in a good place with this lately, but it obviously monopolizes a lot of my active thought. As I thought about Kenny, I kept thinking about my own mortality. Not that I feel like I am dying, because I don't. That's the point I kept coming back to. I realized that I won't ever be dying. As long as you can breathe and your heart is beating, you are living, not dying. You still have experiences to relate, laughs to share, and as my friend Annette Koob says, show tunes to sing. I choose to look at life this way now. Each day is a blessing. I will die someday, but I will never be dying, only living. A note to friends and family, don't let me forget this when the chips seem down. I hope I don't need reminding.

Introducing ... David E.!

I have been emailing David E back and forth for the last couple of days. His blog is "The Big C" and can be found under links on this page. He lives in Kansas City, but is originally from St. Louis. His story is very similar to mine, but started 5 years ago. In fact, he just celebrated his 5 year Blog-versary. Not a real word, but you get the point. He has a lot of great info on his site, as well as a link to a non-profit foundation that he started to raise money for Prostate Cancer Research. Definitely worth several looks.

Feeling pretty good today. Took the kids to see Alvin and the Chipmunks Squeaquel (sp?). It was better than I thought it would be, but mostly exactly what you thought it would be. My buddy Joe recommends "Avatar" on the big screen, but that one is not for the kiddies. Thanks to all of you and if I haven't said it enough, I am in the best of care. My wife is the very best in the world for me and keeps me focused on taking good care of myself. Tomorrow we start Tai Chi. Slow motion martial arts for the expected slow motion attack. "Hit me right here. Ouch. No, slower" :)

Blood Work is Back!

If you can tell from the exclamation, the results are good! PSA is down to 3.7!!!, Alkaline Phosphatase is still high at 242, but only up from 240 over the last 3 weeks. AST and ALT (2 other Liver indicators) are still very safely in the average range. How I love to be average again!! Testosterone is at 12. Another great sign that Hormonal Therapy is working. Welcome to the Brian Roller Coaster. Labs look really good and we are thrilled with the results. Thank you for all your thoughts and prayers. They are working!!
B.

Better today

Sometimes all of this gets a little overwhelming. I think that I have to maintain a grip all the time, but in reality, you have to break down a little to rebuild your focus and appreciatate the good things in your life. I have too many things to be grateful for to list and I have hope. I did have a step back yesterday and last night, but I feel more like myself today. The Lupron taking my testosterone to 27 (normal 250 to 400) is likely piling on some also. Life is a roller coaster right now and my emotions tend to be along for the ride. We are looking at many options right now and some of these need to be taken on a step by step basis. I had blood drawn for a PSA and Alkaline Phosphotase on Tuesday and hopefully will get results today. Then we start to decide if a bone scan or PET Scan is the wise way to go. I will talk to my doctor after I get the results. I know some of you reading might wonder why all the detail in these posts, but it really does help me think things through and I think I will do better if people know where I am truly at, instead of putting up some kind of disguise.
As always, thanks for reading.
Love ya!
B.

Sad tonight...

I wasn't sure if I wanted to share all of the details of my life with cyberspace, but my whole purpose of this blog was to help others identify and relate with my situation so they know that they were not alone. By helping others, I am helped.
I am not sure what happened or how, but after a phone consultation with a doctor, my mood collapsed. I am not afraid of what might happen (right now), but I don't want to get worse and deteriorate in front of the people I love. I don't want to say goodbye to my kids and my wife. I don't want to look at my parents, brothers, and sister from a hospital bed. In short, I am scared. I'm not quite 40 and was not prepared to think about this or make preparations for these things. I have spent the last hour or two fighting tears, and mostly losing. My dear, sweet wife is here to support me and believe in me. I need her strength because sometimes, I don't have any. I am not feeling sorry for myself, just helpless. I want to do the things that will help, it's just not clear what all of those things are. I know my family loves me and I am blessed with many great friends. For all of these reasons, I will fight harder, learn more, and pray more sincerely. I am not alone...and never will be.

First Post and the Whole Story...

My intention for starting this blog was to share my experience, and hopefully my strength and hope. I would like to share my story in the hopes that someone can relate to it and will help them to find proper treatment.

In early June 2009, I began a diet known as the HCG diet. This is a fad diet that requires daily injections of a synthetic hormone. Even though I did lose weight over the two weeks I took the injections, I felt uncomfortable with the idea of injecting synthetic hormones for the purpose of losing weight. After two weeks I stopped taking the injections. After about another week or two, I noticed a change in my urinary patterns. I had urinary frequency at night and a feeling of constriction and weak stream when I did need to urinate. I am not sure if the HCG was related or not. Since it had been about two years since my last physical, I made an appointment to see a general physician. My overall health checked out fine, including my prostate, but when my blood test results came back, my PSA was elevated to 30.5. A normal PSA is under 2.0 and many times, under 1.0. The doctor called me to retest my blood in case of lab error. I went in the next day and had my blood drawn again. This time my PSA came back a 31. I was immediately referred to an urologist.

The urologist checked my prostate again and it was determined that it was extremely tender and swollen, likely due to an infection. I was put on an antibiotic, Levaquin, for about six weeks. I went for follow up appointments during the course of this antibiotic, but it was still decided that this was likely prostatitis. My wife and I were worried that not enough was being done to rule out cancer, but that assumptions were being made that it was only infection. We decided, at this point, to see a naturopathic doctor who specialized in prostatitis.

We went to see the naturopathic doctor and he also determined that this was very likely prostatitis and cancer was a remote possibility, and likely not possible at all. He prescribed a tonic, supplements, and a testosterone boosting supplement, Orchic PMG. We asked several times if this testosterone booster was wise since we had not had a biopsy or determined that this was not cancer. He replied at my age, 39, and without family history that the likelihood of cancer was almost zero. We decided, since he was so insistent, that it would be safe to take Orchic PMG. After four or five weeks, the pain in my hip and lower back had become severe, my insomnia was intolerable, and my urinary symptoms had increased. I decided at that point to cease taking all supplements prescribed by the naturopathic doctor. My wife and I decided that we needed to get to a respected urologist to determine the best course of action, and to rule out cancer.

We were able to get an appointment with a new urologist based on the high PSA and the symptoms that I had. When we went to the urologist, he told us that he wanted to do a new PSA, check the prostate, and since the symptoms had been there so long, a biopsy. We asked my wife to leave the exam room and the doctor performed a digital rectal exam. He noticed very quickly that the prostate was extremely hard and nodular. It was at this point that he informed me that there was a very real possibility that this was cancer. He said, at this point, that there wasn't any sense in prescribing antibiotics again, but he wanted to draw blood immediately to check the PSA and schedule for a biopsy. I had the blood drawn before I left the office on November 12, 2009 and scheduled the biopsy for the following week. I called his office on November 17 to ask if the results of my blood test had been received. The nurse said that the blood test had come back and that my PSA and risen to 151.8. My wife and I discussed our options and decided that our best course of action was to get Huntsman Cancer Institute involved. We canceled the biopsy with the urologist and told him that we were following up, but felt it was in our best interest to get Huntsman to perform a biopsy and discuss treatment options from this point on. The urologist agreed and wished us good luck. We scheduled a CT scan for Friday, November 20. We received the results the same day. The prostate appeared abnormal with malignancy spreading into the rear wall of the bladder and substantial lymph node involvement in the abdomen.

The biopsy was scheduled for November 23, 2009. The physician assistant performed another digital rectal exam and agreed that the prostate was extremely hard and that there was a very real possibility of prostate cancer. I went in for the biopsy and received one shot of Lidocaine in each side of my prostate. They then harvested 13 cores from my prostate. The doctors were incredibly compassionate and sympathetic at Huntsman, but I wished that I had known then to ask for a twilight sedative before the procedure. While the biopsy was very necessary, it was extremely painful. I have heard other accounts that did not seem to be as painful, but instead just very uncomfortable. Mine took about 45 minutes and I would strongly recommend to others having this procedure that they do ask for some type of sedative before this type of biopsy. We were told that the results would not come back for several days up to possibly two weeks. With Thanksgiving in three days, it seemed that we would be closer to the two weeks before we get a result. We asked the doctors performing the biopsy and the physician assistants if they would do everything they could to get the results as quickly as possible so we could start to think about our options over the Thanksgiving holiday. They were very diligent and made several calls to the lab to get the results as quickly as possible. In fact, I received a call the very next day, on Tuesday, that the results were in. Cancer was noted in all 13 cores, with a Gleason score of 9. The Gleason scale ranges from 2 to 10 and is determined by the abnormality and likely aggressiveness of the cancer, 10 being the worst case. I was asked to come in the next day, on Wednesday, for a bone scan.

The bone scan took place on November 25 and we met with our oncologist at the end of that day. We were hopeful that the cancer had not yet spread into the bones, but unfortunately that was not the case. The bone scan showed tumors present in the hips, pelvis, spine, ribs, sternum, and shoulder blades. After consultation with my doctor, he informed us that since the cancer was so widespread, surgery and radiation were not an option. Instead at this point I was to receive Lupron, a hormone blocker that stops the production of testosterone in my body. The reason for this is that prostate cancer initially is mostly hormone dependent. Stopping the production of testosterone in my body would likely send the prostate cancer into a temporary remission. At some point in the future, and each person is different, the Lupron will no longer be effective. When that happens, chemotherapy is the likely option unless something new has been approved. He also told us that I need to receive monthly infusions of Zometa. This drug is used in cancer patients for symptoms similar to osteoporosis. It strengthens bone, promotes healing, and has shown in some trials to have anticancer effects. We asked, other than the quarterly injections of Lupron and the monthly infusions of Zometa, were any other treatments planned? The oncologist said that due to the advanced nature of the disease, hormone therapy was the protocol until it no longer worked. My wife and I decided that we would do this hormonal therapy, but we wanted to look into other alternative treatments that would complement conventional.

Our searches for other treatments lead us to the new Suzanne Somers book, Knockout, which was recommended by my mother-in-law. This book interviews several doctors who are combining conventional and alternative medicine to the treatment and lengthy remission of cancer. After researching many of the fine doctors in this book, we decided to place our trust in Dr. Forsythe and the Century Wellness Clinic in Reno, Nevada. We went for an initial consultation with Dr. Forsythe on November 30, 2009. His clinical trial for Stage IV prostate cancer was in progress for over four years and had a survival rate of 84%. This compared to the 20% to 30% five-year survival rate of conventional alone treatment. We were very impressed with the Century Wellness Clinic in the doctors that work there and decided to begin treatment immediately.

Before treatment began they drew blood. When my lab came back, my PSA had risen to 158. Over the next three weeks, I met with doctors nearly every day and received infusions of Salicinium, hydrogen peroxide, and vitamin C, in addition to conventional medicines, vitamins, and supplements. When my blood was drawn again near the of my three week program, my PSA had dropped to 131. I credit the fine doctors and this clinic with stopping and stabilizing my aggressive cancer. I also received my first injection of Lupron near the end of my visit in Reno, and on January 6, 2010, my PSA dropped to 19.5. I will continue my treatment in Reno for one more week in the middle of February. I will continue to update weekly or more if circumstances warrant through this blog.

If anyone has any questions or comments, or I can be of help or service to anyone, please contact me through this blog and I will be happy to assist in any way possible.

Thank you and God bless,
Brian.