Mayo Clinic Visit

Well we made it back from the Mayo Clinic in Rochester, MN. What an amazing place. They are very professional, efficient, and caring.

We started our day at 6:30a.m. at the admissions counter, did blood work, saw a PA and the doctor who personally oversaw my case all by 12 noon. And no one rushed us to get from one place to another.

The review was encouraging in that we still have conventional treatments available. The trial drugs that are in studies right now are also an option, but the draw back is whether you do or don’t get the test drug. I take a 1 in 3 chance of getting a placebo. The PA and the doctor did not want to take that chance in my case at this time.

Though there is a drug that is currently in a trial study out of Europe called Regorafenib. It has an amazing 81% of patients in the trial experienced disease stabilization or regression. For some one like myself stabilization is a positive step.

I do not know when this drug will be made available to the public, but I praying that it is soon.

So the current plan is for me to get back with my oncologist next week and start one of the 2 different chemo treatments that I had a good response to. Side effects are not the best with any chemo treatment, but you have to keep going and keep FIGHTING CANCER.

The doctor from the Mayo Clinic will write up a complete recommendation plan for me and have that sent to my oncologist here to be implemented. 

Until next time ENJOY THE DAY! and keep FIGHTING CANCER

The Blessing of Thanksgiving

Update on my blood work; Seems that my liver enzymes and kidney levels have improved over the past 2 weeks. I also received a call from MD Anderson (MDA), where I thought all hope of getting was lost. It seems as though some effort is being made to see where I would fit best in the puzzle.

Since I have gone through all the traditional chemo treatments approved by insurance and the FDA, I am now entering into the experimental class (a.k.a. Clinical Trial material). Additional information has been sent to MDA and we need yet to send the data from this week CT scan. From that information I will probably end up as I understand it today at the Center for Target Therapy at MDA.  We will wait and see. Until then we leave soon for the Mayo Clinic in Rochester, MN. for testing and recommendations.

If nothing else so far I have learned that the Mayo Clinic likes forms. I have completed no less than 20 pages of forms and I have not left town yet! I’ve been told that the first day starts at 8 a.m. with nothing to eat 13 hours prior to my visit. Then the day will be filled with a batter of test and more forms.

The second day is scheduled with an oncologist to review my condition, answer questions and to talk about a plan of action. I’m praying that I’m not jumping out of the frying pan and into the fire! I know the road I have already traveled and it at times has not been pleasant for me or my family.

The blessing of Thanksgiving is once again here. I’m thankful for all that has been given to me, a beautiful wife, daughter and granddaughter, a loving family and amazing friends, all of which who have helped me get this far in this battle. In this battle your support system means as much as the treatment itself if not more, much more.

I no longer count the years, but now count the seasons that come and go in my life. To wake up in the morning an to see, feel and hear the small changes as the season move from one to another is precious to me in many ways. The songs of the birds change the sound even of the leaves in the tree sound different to me now. The smells of the woods, the time spent on the tractor mowing for sure (well I guess dad and my brother now do all that) and the angle of the sun in the house windows change almost daily.

This is a time to look back at a years spent and remember all that have come across our paths and the joy they each brought. It is also time to reflect back on those that have left this place on earth to the next journey of their travels. I often find myself wondering now where my travels will take me from here and though I wish not to leave this part of the journey yet by any means I now that next leg of my travels will be as wonderful as this one has been. How’s that song go; “We all want to go to heaven, just not right now…” or something like that.

I can only hope that each of you give thanks not just for all the food and the football games on this coming Thanksgiving day, but to those thing that are most important in your life and memories.
Now with all that said be safe and pass the pumpkin pie please
.
SIDE NOTES:
Airport Security – making me madder by the day.
Please tell me it’s not about the money, but it’s about life?

Until next time you must keep FIGHTING CANCER and most of all ENJOY THE DAY!

The Quest Continues

Well I’m disappointed to say that we have no news on scheduling any appointment with MD Anderson. 
 
Seems that not only is the appointment freeze that is currently underway an issue, but the fact that I’ve been through most of the “approved” chemotherapy treatments known for colon cancer. The fact too, that the treatment that Dr. Burzynski had me on that was working and then my cancer decided to mutate is also a factor with MD Anderson. 
 
So, the next logical question that you would ask is where else or what else can we do? Well even though we all know of say the Mayo Clinic in Minnesota or others, insurance does not cover all those places. So, the cost is on you. The challenge is not always the disease. 
 
We continue to learn more about new cancer treatment methods that are working in trials and see amazing things on TV, but many are years from the masses. So, as for part of  the what’s next may be a trial and we will talk about that if and when it takes place. But for now the first thing we need to do is get an appointment with MD Anderson or the Mayo Clinic.
 
Till then ENJOY THE DAY and You Keep Fighting Cancer.

You Fighting Cancer

MD Anderson

Well it's been a rough few days. I've been running a temperature of 100+ the last 3 days, but we have been able to keep the temp below 100 for the most part with Tylenol. The fatigue of fighting and infection or at least this fever has been a lot of work. I've lost all my appetite and all my energy.

I will be contacting my doctors Monday morning to see what we need to be doing next. Just a few weeks ago this got me 5 days in the hospital and no one could tell me why I had the fever. I'm not planning on that trip again...

As for MD Anderson... Well the insurance company finally gave me the "approval" to go to Houston and of course it took just long enough that MDA is no longer take any new appointments for 2010. In fact I can not even schedule an appointment for 2011 yet either.

I will have to just keep calling for any changes or updates to the current status of no new appointments. All my records have been shipped to MDA, so we should be in good shape once we get a date scheduled.

It will be interesting to see how much my CEA (tumor markers) go up this week. I have reduced the amount of Xeloda that I'm taking since I believe it plays a roll in my fever.

From Lisa's Office:

Here are a couple of web sites that have some updated news from around the world;
From Melbourne and a study on a protein that kills cancer cells - good stuff
From Vanguard News - and article about nutrition (though is says fighting cancer) and how important good nutrition is for you all the time. Not just after you have cancer. 

Till next time Please ENJOY THE DAY and You Keep Fighting Cancer!

You Fighting Cancer - Burzynski Treatment 41-42

The Next Event

Well after some major conversations with Lisa, my family and my oncologist the choice I made is to make a trip to MD Anderson for a review and to see what might be possible there. 

Why did I make that decision vs. staying with the Burzynski treatment protocol? It was not easy for sure. Burzynski’s clinic has gotten me this far, not that the side effects as you all have read have been “bad” in my words. And I was told that the current treatment is not working and a new treatment needs to be tried.

The other issue is that my insurance will not pay for anything that Burzynski’s clinic does. The new protocol that is being called for would cost up front another $20K just to start that treatment. Burzynski Clinic has a higher success rate than most treatments, but it comes at a very high cost. 

If you can get your insurance to pay, which many do now, that is one thing, but for me it’s more than just spending the money. It’s the guessing that the next treatment will work while spending that kind of money. This would be true for any treatment not just those recommended by the Burzynski Clinic.

MD Anderson also has trials in Cryosurgery just to name one that could be a possibility for my cancer. It is also good to see/hear what other options are out there.

So right now I’m waiting on insurance to “approve” my trip to MD Anderson before we schedule the trip. Everyone is ready and in agreement to go, but the insurance company is the road block at the moment.

So, the next event is in works and we will keep you posted on the outcome and recommendations from MD Anderson. Until then – ENJOY THE DAY!

You Fighting Cancer - Burzynski Treatment 39-40

Beautiful Day!

This will be a short post just to get everyone up to speed.

First the Burzynski  Clinic was not very happy with my last CT Scan, so... I have done another genetic blood work up and FedEx it to them. They did not want to wait the week and a half for the results to come back here. It appears the solid tumor has gotten "more defined by 42%" and I have more fluids building up in my abdominal area.

This may mean a new protocol for me soon. I should know more this coming week.

The next event and it is all about getting through the next event. They put me the hospital Friday (9/24/10) night for running a 102.5 fever and I managed to get out on Tuesday (9/28/10). No reason discovered for why or where the fever was coming from. Though I complain about going to the hospital, when you are fighting cancer and have a very weak immune system anytime and if you run a fever over 101 for more than 30 minutes you need to go straight to emergency room. I just hope you don't get stuck there for 4 days.

On a much brighter note, this weather and time of year are my favorite. Lisa & I just returned from Colorado where the Fall colors were in full swing and the Elk were bugling in the Rocky Mountain National Park.  Some very beautiful days. If you've never been to Estes Park I would highly recommend it for this time of year.

We also visited with a wonderful scenic and wildlife photographer in Steamboat Springs that again if you get a chance to stop in go visit with Don Tudor. He has a little gallery on the main downtown street of Steamboat  Springs. Some great work.


Till next time; You Keep Fighting Cancer & ENJOY THE DAY!

You Fighting Cancer - Burzynski Treatment Weeks 37 & 38

  “You Have Cancer”

It took two weeks but the rash from the full dose of Vectibix has returned with a vengeance. The worst of it is my face. It truly feels like I have first and second degree burns on my face. Even my eye lids feel and look burnt. Now that’s hard to do! So, I’m piling on the Regenecare like crazy right now and forcing myself to do the pain pill thing. 
 
The really funny part is that this cycle started about 5 days ago and 3 days prior to that the rash seemed to disappear? Within 24 hours it was nearly gone from everywhere on my body and face. But, like throwing a stone into a pond, the water follows the stone to a point before it shoots back up and sends a ripple across the whole pond.

I had to stop the Xeloda completely for a while due to my platelet count dropped to 28, two weeks ago. Since stopping Xeloda, my platelets have returned to a whopping 43. This for me at this stage is about average (normal is 130-160). A drop of 5 more points and I would be boarder line candidate for transfusions of platelets. Bleeding is a major concern with platelets as low as 40-50 even.

“You Have Cancer”, probably the 3 scariest words in the human language. Though they say that cancer is not necessarily a death sentence the fear is that it is still. 
 
If you watched the Stand Up 2 Cancer National broadcast on Friday, September 10th you learned that; out of 20 men 10 will get cancer and out of 30 women, 10 will get cancer. That’s a scary set of numbers but even scarier is that every day in the USA alone 38 children are told, or their parents are told their child has cancer. All these numbers are totally unacceptable. 
 
If you did not catch the show please go to their web site; Stand Up 2 Cancer and donate what you can to help fight this monster. If you did not see the show and would like to, you can still watch the entire show FREE on the WEB. 
 
So, what happens when you’re told “You have cancer”? The shock sets in and the blood drains from your face. FEAR is what happens, plan and simple. As I’ve said on the blog before the first two weeks is an emotional roller coaster that you and your family will ride. There is no way around it so let it happen, it needs to happen. The tough guy thing won't work here!

Then at some point you become aware of the fact that you are mortal and that life does end for all of us at some point, you just did not think it was going to be this soon. You think about all the things that you wanted or think you have to do yet! Did you make an impact on life?
 
I’m here to tell you that NOW is the time to do the “special” things in your life that you for some reason have been waiting for. I know many things cost money and that is a major reason you don’t take the trip around the world you always wanted to do, but the little things like using the crystal glasses instead of the plastic ones or call someone that you have not talked to in some cases for years. Send a card for no reason to your spouse or family; help someone you don’t even know. 
 
By doing these things something else happens, you feel better and research now says that your immune system reacts in a very positive way to these acts of joy and kindness. You need your immune system to be at max power at this point of your life. 
 
Learn a new hobby or to meditate. I’m trying to improve on a hobby and to meditate, but let me tell you it’s tougher than you think. Try keeping your mind focused in meditation for 10 or 20 minutes and think of nothing but your breathing. Let me know how that works for you, it’s tough for me. I think I’m up to 2 minutes! That’s sad I know. 
 
From Lisa’s Office:
Denzel Washington made the comment on the Stand Up 2 Cancer program that “traditional cancer treatment” is/was like using a nuclear weapon to turn off the lights in your house. Everything is destroyed, but hey you did get the lights turned off. One of the major focuses of the Stand Up 2 Cancer “Dream Teams”is that they are working together on  “targeted therapies”. 
 
From the National Cancer Institute also comes more information on targeted therapy and the fact that many cancers of the same type harbor different genes that are typical of other cancers. 
 
For an example I will talk about my cancer. I have colon cancer that metastasize to my liver. I’m treated for colon cancer although I have HER-2 cancer genes that are over expressed in my liver. Those cancer genes are typical in breast cancer. I was not being treated for that since in “traditional” treatments I did not know I had HER-2 cancer genes overexpression...
 
With targeted therapies these details are uncovered and a customized treatment plan is assembled for you and your needs instead of the traditional “nuclear” light switch trick of today. It’s when the cancer metastasizes that make the treatment requirements completely unique for each and need to be customized in said manner for you to FIGHT CANCER in a way that makes sense, by asking and working with your doctor get this customized treatment set in-place. It could save your life!
 
Until next time You Keep Fighting Cancer and ENJOY THE DAY!

You Fighting Cancer - Burzynski Treatment Weeks 35 & 36

Find a Hobby

Well it’s been a good 2 weeks. Rash has gone thru a couple of cycles, but that’s part of the deal!

I was able to take a couple of days and head to Texas to learn more about a hobby of mine, which has a very positive effective on the mind and your self worth. I would recommend that you find your passion or purpose and pursue it each day.

This week I will be doing a FULL dosage of Vectibix on Tuesday.
The doctors at the Burzynski Clinic believe that this one full dosage treatment may have a positive effect on my CT Scan the following week. At the same time I am increasing Xeloda by 250mg more a day. Instead of 500mg a day I will be taking 750mg a day and they would like me to go to 1000mg a day.

 The last time I did all this was in early December and I ended up in the hospital for four days with internal bleeding and a rash from you know where. We will take this one day at a time on this and see what happens.

I guess no pain, no gain?

I’ve been asked a couple of times this past week what some of the supplements that I take? Here is the short list;

A good liquid multivitamin – Vitamin D – Turmeric  Curcumin -  CoQ-10 – Vitamin C – Green Tea – FRS with quercetin (see ad to right of this postings) – Probiotics.

If you’re interested in the brand or where I get these supplements drop me a line. We have learned that not all supplements are created equal. 

From Lisa’s Office: My sister-in-law Kelly sent us information on The University of Kansas Medical Center that has been working on a cancer vaccine. At this stage the vaccine is given to cancer patients that are at the end of any thing else as far a treatment. 

The vaccine’s goal is to boost your immune system to seek out those cancer cells that the standard medical treatment of chemotherapy, radiation, and surgery missed.  

Worldwide, scientists are working on dozens of vaccines against melanoma, breast cancer and cancer of the lung, colon and pancreas. 

Vaccines narrowly target the immune system. Side effects are extremely minimal compared to conventional cancer therapies. Some side effects are no worse than those experienced from receiving a flu shoot – fever, chills, and soreness at the injections sites are the most common. 

Though this treatment is very expensive at this time many insurance companies have come on-board to pay for this $93,000 per treatment drug. 

Upcoming Event: Stand Up To Cancer Program

Until next time – You Keep Fighting Cancer and ENJOY THE DAY!

You Fighting Cancer – Burzynski Treatment Week 33 & 34

Vectibix

Got outside one day this past week for a few minutes and the heat took its toll.

Vectibix does not like sun or heat at all, which makes Summer kinda tough to deal with. So, if you are about to start Vectibix here are a couple heads up for you.

I notice that the side effects go thru a cycle. The rash that I talk about starts about 7 days after your infusion. So, you might think you're getting away from the rash, wait a good 7 days before making that statement.

Also ask to be started on an antibiotic before starting Vectibix. It will help a bit and keep in infection to a minimum.

If you are like me and have a whirlpool tub you will not be able to use that any longer. Hot water is the same as hot air. Not a good mix. Showers are a painful event also, and again should be as cool as you can stand to keep the rash at bay. Use a mild soap and shampoo.

After a shower I air dry as best I can then put on a clean T-shirt as a body bandage and rest for 30 minutes. The T-shirt will catch the blood from the rash areas that open up. And they will after a shower.

Lisa has learned from my mom that soaking these shirts in cold water before washing will take out the blood.

I also can't say enough good stuff about the Regenacare spray and lotion that I use after a shower and when the rash is really bad applying it a couple times a day. It's the only thing that I have come across that helps the pain and healing.

Vectibix is also a chemo drug that you will stay on until the tumors no longer are affected by the drug! So, this is not a 6 week or 6 treatment cycle type of a deal. So, the hard part here is getting your head around the side effects of Vectibix. You should with any luck know if this drug is working for you in the first 3 months (CT scan cycle) of starting treatment.

CT scan cycle is what the insurance companies will pay for - CT scan more than once every 3 months is going to be tough to get them to pay. You shouldn't probably have many more than that anyway for what this scan can do to you over time.

In the NEWS: Fructose Corn Syrup is not good. No kidding! I look at this way; if it is man made it's probably not going to be as good for you as nature intended it to be.

If you are going to us a sweetener then use Agave, Natural Stevia, or Organic Natural Cane Sugar. But this should be a treat and not an everyday addition. You ask what about Splenda? See statement above = not good in my book.

From Lisa's Office: She gained some information on a company named Rational Therapeutics that "identifies treatment options that will kill an individual's cancer cells while eliminating drugs that the cancer is resistant to." This takes into account the uniqueness of each individual's cancer. This method is called the EVA-PCD assay and is "for all cancer patients who are looking for answers about the drugs that will work the best for them" After a sample collection of living cancer cells, Rational Therapeutics performs the EVA-PCD assay on the tumor sample in the laboratory to measure drug sensitivity and resistance. This determines which drug, or combination of drugs, will likely be most effective for that particular patient. This would be different from todays way of the patient receiving chemo treatments that have been determined as the standard for a cancer type. The results are available within 7-10 days after they receive the sample in their laboratory, and has a very reasonable cost of around $3,500. This does not include the tumor biopsy. 


More information can be obtained from www.rationaltherapeutics.com

Till next time – You Keep Fighting Cancer and Enjoy the Day!

You Fighting Cancer – Burzynski Treatment Week 32

Habits

Well we reviewed the 4^th chemo drug that the Burzynski Clinic talked with me about. After talking with my oncologist this past week we opted to not start that drug just yet, but to put it on the back burner for now. Pazopanib (Votrient) has just a few too many side effects for me at the moment, and it is fairly new to the colon cancer treatment regiment. Though the drug is doing some good things for kidney cancer patience's who have very limited resources when it comes to treatments and there are benefits for the colon cancer patients as well.

One of the hardest things to do once you learn you have cancer is right after you get over the shock wave (if you ever do) is to decide to fight. If you decide to fight then you need to go into a learning mode so as to understand what it is that has just attacked your body. Then the really hard stuff starts, the change of "habits"… This is some tough stuff. We are creatures of habit and that you will quickly learn is oh so very true.

If you are a meat, potatoes and dessert kind of person like I was, you're in trouble right off the get go. The number one thing you need to do is change your eating habits and that means cutting out white sugar, white flour, white rice, white potatoes, white anything. So, you're asking why. The reason the stuff is white (potatoes might be the exception here) is they are bleached and yes that is with chemicals to make them white. Everything that was good about those foods is now stripped away. Some will say "you have to die of something" and yes that's pretty much true and if you're ready for that then, I guess eating all that stuff is really no big deal.

I watch at the Cancer Center every 2 weeks volunteers bring donuts around for the cancer patience's to eat and think to myself do they know that they are promoting their death. And I'm sure they do not know they are, or I like to think that way. Or your doctor telling you to "eat whatever you want too, just don't loose any more weight." I knew that was wrong. This is the part about learning what to do to help yourself fight cancer and not promote its growth.

We American's just want someone to give us a pill and have it fixed. I wish it were that easy and the pharmaceutical company's liked the idea as well. They can't make any money if you're your well!

I have also started to drink Green Tea. You can do the research on why Green Tea is so very good for cancer patience's and I won't bore you with all that, but it makes a huge difference. The problem is that it is a habit change again. I like tea o.k., but you have to acquire a taste (at least I did) for Green Tea – remember no sugar is to be added here. Dr. David Servan-Schreiber talks at length about key foods and supplements that have kept him alive for years now with his brain cancer and Green Tea is the first listed in his book.

Resource:

Skin Cancer News

Till Next Time: You Keep Fighting Cancer & Enjoy The Day!

You Fighting Cancer – Burzynski Treatment Weeks 30-31

Targeted Cancer Gene Therapy Treatment

I’m still waiting to learn more about the 4th chemo drug that Burzynski Clinic would like to start me on this coming week. I will see my oncologist on Tuesday and find out what his thoughts are on this. 

Feeling pretty good this past week with the rash at the low end of its cycle which is always a good thing. I have been taken off one of the antibiotics to let my kidney’s rest for a few days. Seems that too much of the Clindamycin can damage your kidney. For every action there is a reaction in this game.

Enjoyed a few days at Branson, MO. last week, what a great place to relax. Then it was off to a 2 day Engraving Seminar with the master calligrapher and engraver Ken Brown. The seminar was a little much for me due to the fatigue, but very good. 

I always talk about Enjoying the Day, that is what Lisa & I did last week for sure. And I believe that you should find something that you’re passionate about and enjoy it, and learn more about it. For me it is the engraving. Find something that you put your time into besides worrying about your cancer. Which is a bad thing to start with, protect your thoughts and keep them focused on getting well. 

My sister-in-law, Kelly found some certified organic beef at Costco’s in Kansas City for a good price. I’m hoping that one of the stores here will follow suite, since organic beef is still pretty pricey in this area. Even at the Farmers Market the price is a little high if you can find it. 

Even though it is organic beef, you should still limit yourself to only a small amount once a week at the most. Yes that is very tough to do. 

From Lisa’s Office; Targeted Cancer Gene Therapy Treatment is finally becoming more accepted in the medical community. According to the Patient Resource Cancer Guide Fourth Edition 2010 Spring/Summer, “targeted therapy is a treatment that targets faulty genes or proteins that contribute to cancer growth and development. These drugs are becoming more important in the treatment of… cancer.”

Targeted Treatments are now being matched to the individual’s cancer instead of one size fits all treatment used today. This one size fits all is if you have colon cancer you get “A”, “B”, and “Z” treatment (if your insurance pays for it). Where in the target way of doing things you may need drugs “A”, “B”, “Z”, and “1A” for a gene that may typically have to do with lung cancer say. 

Learning as much as you can about your cancer and asking the right questions will make all the difference for you in your overcoming this disease. 

Additional Resources: PatientResource.net and MyCancerAdvisor.com

Final note: This is the tough and sad part of cancer to me that the fact we do not already have a cure for this disease. If you don’t think that cancer is a money maker check this link; $1 billion a year riding on OK of drug Avastin. Avastin is used to “treat” cancer not cure cancer. 

Avastin is a very expensive drug that I was taking and if your insurance does not pay for it you probably won't get it. It was giving in the one size fits all approach to treating colon cancer. With targeted therapy treatment it was found that Avastin was not needed for my cancer/gene type.  Don't tell the insurance company, but I may have saved them thousands of dollars by going to the Burzynski Clinic to learn this information.

Until next time You Keep Fighting Cancer and Enjoy the Day!

You Fight Cancer – Burzynski Treatment Weeks 28 & 29

You Fight Cancer – Burzynski Treatment Weeks 28 & 29
More Berries Please

Well good and stable news to report. The CT scan from a few weeks ago shows no change. Which considering the extremely low dosages of chemo drugs I’m taking this is good. The genetic blood test showed that my cancer DNA markers are still very high. 

So, my cancer has now been labeled “as a stable disease”, with the current treatment. Dr. Burzynski’s Clinic wants to add a 4th new chemo drug to my list of pills to see if we can keep progress going in the reduction of my tumors.  As I learn more about this new drug for colon cancer I will of course share that with you and I hope you pass it along to anyone that might benefit from this information. 

There will be no changes in the current drugs, so I would not estimate any changes to the rash either. For now anyway! 

If anyone would like more information on the extreme fatigue or on the rash, please drop me a comment below and I would be happy to share what we have learned.  I will not bore the rest of you with this stuff. It’s not very good stuff anyway. 

One reason I like this time of year is for the berries that are in season. I can never get too many and Lisa hears me all the time asking for more berries please. 

I don’t normally share information on this blog unless I have read, heard or watched the same information from multiple sources. The information I have gained on blueberries, raspberries, blackberries, strawberries and cherries is nothing but amazing. 

I would not recommend the grocery store strawberries. Strawberries are grown a lot of times in greenhouses and are sprayed daily with herbicides, pesticides and fertilizer. Ever notice grocery store strawberries never go bad in your refrigerator?

David Wolfe is one of the people that talks about berries as does David Servan-Schreiber  in his book Anticancer: A New Way of Life (see book to right of this post).

Which means get to the Farmers Market in your area and get as organic a berry as you can. I just picked up 6 pounds of blueberries that are organically grown here in Kansas. Which 5 pounds of the 6 are now in my freezer. I would highly suggest that you freeze the berries on a cookie sheet first then put in a Food Saver type bag to keep them from freezer burn. Six pounds of blueberries normally do not last me all winter, but this year I have my own berries to eat for the Summer so that will save a few for the Winter. 

Blackberries will be next in this area then Raspberries. Raspberries and Blueberries offer some very amazing benefits to your well being so, please pass the berries!

Till Next Time: You KEEP Fighting Cancer and ENJOY the DAY!

You Fighting Cancer – Burzynski Treatment Week 27

Greatness  

What a week can make as I have said before. The rash has gotten much worse over this past week. All I can share is that the rash goes in a 2 week cycle regardless of all the doctor’s efforts and the drugs they give to reduce it. 

The 2 week cycle starts with the infusion of Vectibix. Normally that week is pretty good. The week after the infusion the rash begins to worsen. With just a few days before the next infusion the rash breaks and begins to lessen its hold. 

I’m putting together a book that will talk about the 10 to 20 things that you will want to know when you’re told you have cancer. It will take me time to put this together in a logical order, but my goal is to let people know what you will go thru emotions, psychical, mental, financial, and what it’s going to take to get through it all. 

One of the things that I will be sharing in the book is where to start your fight with cancer;

One of the hardest parts of this journey is how we learn to inspire ourselves to greatness, normality and the willingness to fight when nothing else will? When it really boils right down to it this journey starts with you, your thoughts and your choices. Your decision to fight or to give in to this disease begins with you and only you. The support system, your family, and your doctors can only give you encouragement and direction; it’s your choice to lead the fight.

As I read and learn more on cancer, its treatments, and its side effects from those treatments, I seek the answer that will help me with fatigue. Just one of the many possible side effects and one that can linger for years after the cancer is gone. 

Here is an update on the Kanzius Cancer Research Foundation that’s good news. The research can never go fast enough but the money part is needed in a desperate way to keep things going. Thank all of you that voted via Pepsi for the Kanzius Foundation.
 

I ran across this poem that we had the good fortune to hear Lou Holtz (yes that Lou Holtz) read at a conference we were at and it has always stuck with me. Sometimes it stuck in the back room of my brain, but none the less it stuck. I hope you enjoy it.

The Dash
By Alton Maiden
University of Notre Dame- 1996

I've seen my share of tombstones,
but never took the time to truly read,
the meaning behind what is there for other to see.
Under the person's name it reads the date of birth, dash(-),
and the date the person passed.
But the more I think about that tombstone,
the important thing is the dash.
Yes, I see the name of the person but that I might forget,
I also read the date of birth and death but even that might not last.
But thinking about the individual,
I can't help but to remember the dash,
Because it represents a person's life and that will always last.
So, when you begin to charter your life,
make sure you're on a positive path.
Because people may forget your birth and death,
but they will never forget your dash.

From Lisa’s Office: First of all, it seems pharmaceutical companies are moving away from the more cost-effective one-size-fits-all approach to drug development and embracing the long tail of cancer treatments, engineering drugs that only work for a small percentage of patients but that work very effectively with in that group, says Clay Dillow of Pop Science.

Also, the fact that two competing pharmaceutical company have come together with their independent cancer drugs to combine them in a trial is unheard of. In a trial of 66 patients, 100% of them had positive results in reducing there multiple myeloma by half. By half!
 

Amazing what can be done when knowledge comes together for the greater good of the patient.

Till next time - You keep Fighting Cancer & ENJOY THE DAY!

You Fighting Cancer – Burzynski Treatment Week 26

Beating the “Averages”
 
Well the best news to report this week is my rash is much better. I’ve started taking 2 different drugs; Doxycycline and Methylprednisolone. Doxycycline is a antibiotic and Methylprednisolone is a steroid, I don’t know which one is working, but one of them seems to be. I will let you know how this progresses.
 
I’m still waiting for the detail reports on the last CT scan and genetic blood work from Dr. Burzynski’s clinic. I expect to hear from them this coming week. Early report’s on the CT scan is everything is “going well”. 
 
I refer to David Servan-Schreiber book Anti-Cancer A New Way of Life (Link to the right of this post) and I will continue to do so for the great information that is in the book for anyone that has cancer or anyone that wants to do all they can to keep from getting cancer. There are no guarantees in life that cancer will not find its way to your door steps, but get yourself as health as you can before it gets there. I pray it never finds its way to you or your loved ones.
 
I visited with Molly this past weekend and she was telling me that she did many of the right things to be healthy, the exercising and the o.k. diet plan, but said she still smoked. Now she tried to justify that by saying that she only smoked 2 cigarettes a day. I told her about our dear friend we buried not but a few weeks ago from lung cancer, I went on to tell her it was not if she would pay the piper someday, it was a matter of when she paid the piper. There is no justification for smoking!
 
I know we all can do better to be healthier and no one has the perfect routine in life, but as I have said before if you take the first step and just one step at a time in the right direction you will be in a better place, mentally and physically if a serious illness ever comes your way. The first steps are to reduce processed sugar and flour from you diet as much as possible. 
 
One of the things that I struggled with and at times still do, only because it is shoved in-front of us all the time are the statistics of cancer and fear of certain death from this illness. Sad to say death is certain and we always wish or think we have more time than we do, but… Now you know why I always end my postings with ENJOY THE DAY!
 
Back to the stats of cancer; you always hear if you have cancer the “average” life span for your cancer type or Stage is so many days, months, years. In David Servan-Schreiber book comes a statement that I hold fast to now; “Statistics are information, not condemnation. The objective, when you have cancer and want to combat fatality, is to make sure you find yourself in the long tail of the curve”, in other words the average.

 
The curve that biologist Stephen Jay Gould is talking about in the book states that 50% of the people of a given type of cancer have X number of days, months, or years… to live on “average”. Those with a typically un-healthy life style and wish not to change are on the left  hand side of the curve (short life span - typically) and on the right hand side are the other 50% which are those that adopt an active roll in taking charge of their cancer and typically out live the “average”. 

 
Stephen Jay Gould was diagnosed with cancer and was given 8 months to live (the “average”). He went on to live another 20 years and die of another disease. He put himself in position to be on the right hand side of the curve. 
 
For many, many months I read and listened to those that gave the stats on my type and Stage of cancer and limited myself to not believing I could beat the “averages” and not to continue living life. It finally hit me that I was wasting time and just waiting for the average date to arrive. With my wife, family and friends who give me incredible support and positive direction and who helped me finally decided I was going to be on the right hand side of the curve. Besides my wife would not allow me to be on the left hand side of the curve.
 
If you want to learn what Dr. David Servan-Schreiber talks about in his book for beating the “averages” click on his book to the right of this posting. I’m sure you will hear me talk much more about his book in weeks and months to come as well as other books that I find helpful in this journey. 
 
Until then – You Keep Fighting Cancer and ENJOY THE DAY!

Six Months – Burzynski Treatment Week 24-25

Burzynski Treatment 6 Months

Busy week or two here with lab work and scans.

Last week I did a blood work up for my genetic markers again for Dr. Burzynski’s Clinic in Houston. The results from this test should be back in a week to 10 days. What we are looking for is to see if the genetic marker HER-2 is shutting down as we hoped.

HER-2 genetic marker is the reason I’m taking Tykerb which even though I have a 12% reduction in my tumor size on the March CT Scan the insurance will not pay for, “not approved for colon cancer”. It works for half a dozen other cancers, but not colon so they don’t have to pay? Go figure and enough said on that.

The Burzynski Clinic is working on the DNA/Genetic theory if you can turn off the genes from doing things they are not suppose to do, like create cancer cells then you are working at the source of the problem. So, far we are making positive progress with this theory.

Then on Tuesday a.m. this week I did another CT Scan to see what type of progress we are making with the two remaining tumors. For the most part no one really knows the details of what a treatment is doing until a scan is done. Your oncologist relies on blood lab reports to monitor you on a weekly basis, but as far as the results of the treatment you really need to do the CT or P.E.T. Scans.

I don’t like doing all the radioactive and nuclear testing of CT and P.E.T. scans, but they are a necessary evil at this point in my journey. These tests will make you sick, or I should say they make me sick.

Then off to do blood work. This week saw a couple improvements:

• Platelets are up a bit to 38K – Still a ways to go to 140K but any increase is good increase.

• Hemoglobin is up to 10.5 – I have been getting Procrit shots every two weeks and I’m taking a slow release iron pill in the evening, along with a couple bananas’ a day now.

The Vectibix rash is really not liking Summer time with the sun and the heat. I get out only on cloudy days or late in the day to help with yard work. The rest of the day is spent indoors in a cooler area. This is not a good thing for an active person. But with all this stuff, I am still so blessed and happy to Enjoy The Day, every day

.

I see and meet people at the Cancer Center every other week that set me back a foot or two and I realize I know nothing about pain and suffering. I made it almost 50 years healthy as an ox and enjoyed many things and now I see kids in the center in their early 20’s taking daily treatments. Others come in so fragile, weak, on oxygen and in wheelchairs.  The young children are treated in a separate location from the adults. That would be the most painful thing I could imagine is to see young children getting a 1 or 2 inch needle stuck into their little chest every two weeks or more for a chemo treatment.

I met a man that has been going to the Cancer Center once a month for a 5 hour treatment for the last 4 years and is smiling every time I see him. I think once you get over the up front fear and first couple rounds of treatment you realize that you are lucky to be alive and that you have a choice to make. You can be bitter and complain about the situation you’re in or you can enjoy every day as it comes. Yes there are going to be many days that the pain, sleeplessness, rash’s, lose of hair, weakness like you’ve never known before, even more surgery’s than you ever thought you could live through come at you, but you do. And you count your blessing and thank God every morning you see the sun rise in your bedroom window.

Ben Franklin is quoted for saying that goes something like this; “most men die at age of 20, they just wait till their 70 to get buried.” For most of the cancer patience I have met, they are living every day to their fullest.  It is sad to know that for most people it takes a major event like cancer, a heart attack, or something life threatening to wake them up to really understand what they are missing in life and what’s important.

Here are some new numbers for 2008 on cancer in the USA. If this does not scare you I don’t know what will. The new predictions for 2030 is that 13 million will die annually world wide from cancer.

If each one of us did just a small thing to move company’s in the right direction every day, it will make a difference on that 2030 number. Buy organic, shop locally when you can, visit your Farmers Market and buy food products that are environmentally and human friendly. Grow a garden if you can. We planted one, but since I can’t get out to take care of the weeds, I fear we will loose sight (literally) of our little crop. The blueberries, strawberries and blackberries are all looking good though.

If you know someone that is going through the cancer journey that might like to talk or visit on what we know, please send them to this blog and I look forward to hearing from them.

Until next time Keep Fighting Cancer and ENJOY THE DAY!

You Fighting Cancer - Burzynski Treatment Week 23

Fair Well to a Fallen Knight

This has been an un-eventful week for my status. 

Lab work showed that my platelets are still up a bit from the platelet infusion for my surgery a week ago. My hemoglobin is creeping up and my white blood count is back in the “normal” range again. So, this is all good. 

This coming week I will be seeing my oncologist and will be going for another Vectibix treatment at the cancer center. The rash from Vectibix is flaring up again this week which is the norm’. Seems that about 2 weeks into the last infusion, the rash makes a showing. 

I continue to use the Regenecare products which seem to help not only in the temporary relief from the burning pain, but it also seem to help heal the rash. 

Fair Well to a Fallen Knight;
 
Saturday afternoon one of the few remaining Knights of the Round Table in my life passed away from cancer and its complications. 

I have been blessed to have known so many wonderful people in my life. Which very few remained in my life from childhood till this day, with all the traveling that I have done. This man was one of those people. He was also one of those men that could do in my eyes about anything. 

I remember as a boy camping in Glacier National Park at Two Medicine Lakes with my family and his family. Mr. & Mrs. Dollard have 3 boys and then there was my brother and myself. Talk about a hand full. Not really, all 5 boys had such respect for Mr. Dollard and my dad that we, let say stayed in bounds. 

If you needed to repair anything, build a house from the ground up, hunt, or fish for anything and catch it. A man with common sense, knowledge, integrity and an awareness of right from wrong, who valued family a friends above all else. 

Mr. Charles (Bud) Dollard will be truly missed in my remaining life time. I know that he will hold a spot for me next to the best fishing hole in heaven.  We will say a final fair well to this man later in the week.

Until next time YOU KEEP FIGHTING CANCER and please ENJOY THE DAY!

You Fighting Cancer - Burzynski Treatment Week 22

A Guaranteed Smile

"Guaranteed Smile", we will get to that in a minute.

Update on yours truly. The hernia surgery went very well Friday. It was a very long day, but it is well worth it. The surgeon was not able to drain any fluids off my abdomen due to the high risk of the location of the fluid. So, it was decided not to take the chance of punching extra wholes in me at this time. 

We started the day at 6:30a.m. and my last chance to take a drink of water until after the surgery at 5p.m. At 8a.m. we headed to the hospital for an infusion of 2 units of platelets. This worked great, and brought my platelets up from 33K to 71K for the surgery. 

The way we found out that the fluids on my abdomen were located in high risk areas was via an ultrasound scan. Two technicians and one doctor finally decided not to remove any fluids at this time. 

It was also directed earlier in the week that I stop all medications in order to get my platelets as high as possible. So much for that idea, since as I said earlier they were only 33K this past week. I’ve since started taking most of my supplements today and will start back up on the chemo pills on Monday this coming week. 

Also, this coming week I have some lab work and recovery from the surgery and that’s it. Easy week fore sure.  Interestingly enough I am not to just lay still for 2 or 3 days, but I’m to actually get up from time to time and take short walks in order to keep the scare tissue from building up. This is good; cuz just sitting around is tough for me to do as most of you know by now.  

Now for that Guaranteed Smile!

For the past couple months now during my Vectibix infusion a gentleman brings by a little long haired dachshund into the cancer treatment room. It is a service that volunteers do everyday at the cancer center where I get my treatments. 

It’s not so much that this dog is super special in his personality, but the fact that he is a dog that lights up the faces of the cancer patient’s within the center every time he is in the room. Prior to this dog or any of the volunteer dogs coming into the center you can see the pain in the faces of the cancer patient’s. 

Some of these folks are holding on by a thread and others just starting their journey with cancer and are scared nearly to death. Yet when this little dog makes it to their chair and they get to pet him, a smile is guaranteed. 

I don’t know what it is about pets that bring life back into us, but I know that they do. I see it at the cancer center and I see it at my own home with our dogs; Haylee and Padre. 

If you know someone that is going through a tough health challenge and they need a guaranteed smile take your dog over to their house or better yet take them to the pet store to look at and hold a puppy. If nothing else take some fun photographs of your pet to share with them. Pets are amazing for your well being. 

Puppy’s can make the world right if even for just a few short minutes. For me, God’s answer for a bad day are my two dogs, my family and my friends. 

Currently reading a couple of books, but one I would like to share with you here is; Rethinking Cancer, Non-Traditional Approaches to the Theories, Treatments and Prevention of Cancer by Ruth Sackman. Ruth Sackman is the co-founder of the Foundation for Advancement in Cancer Therapy (F.A.C.T.). 

In her book, she share’s some of her 30 plus years of knowledge on cancer and the fact that we (Americans) don’t focus on the cause of our cancer, but our “traditional” treatments are to address the “symptoms”. She also shares that there is no one fix for every cancer, in fact every cancer and every person is different and should be treated as such. What a great idea!

Her focus is to find the cause of your cancer and address it. 

I would recommend that you read this book especially if you fit into one of these categories;
       1.    You don’t have cancer yet
       2.    You just complete traditional cancer treatments and you were told you are “cancer free”
       3.    You just learned you have cancer and do not what to follow the “traditional” route of chemotherapy or radiation. 

Until next time – You Keep Fighting Cancer and ENJOY THE DAY!

You Fighting Cancer – Burzynski Treatment 20-22

Well it’s been a couple weeks since I last updated, but have a few things going on to share.

Blood counts this week showed a drop in platelets to 31. I have started taking Tykerb again which may have some effect on the platelet counts.

From the last CT Scan new fluids around my abdomen were found, which my oncologist would like to get a sample and drain, but with my platelets so low we have not done that yet. The oncologist wants to check the fluid for cancer cells. Which we know would be bad. The option that we are looking at is to give me a couple rounds of platelet infusions and go into surgery to drain the fluid. This fluid issue may also be the cause of my blood counts.

I have also had a flare up with the rash since Spring has started. I had been outside one day for just a few minutes and that’s about all it took to flare up my rash on my face, neck, and back. My back was not even exposed to the sun.

Talking with the Nurse PA, she advised me to cover up as best I can when in the sun and use the highest sun screen “lotion” I could find. The gel does not react well with the rash. So, far the lotion is not reacting very well either. It needs to be washed off as soon as possible and Regenecare put back on.

I feel from time to time to tell that not only do you have to deal with the cancer and that journey, but to tell you that you will be dealing with insurance, bills, and your work place. Though the insurance people that I talk to on the phone seem to only want to help they are limited to their company’s “policies”.

Which means in my case as I learn is not all too uncommon in a lot of peoples cases, is that for my treatment from the Burzynski clinic is not paid in any portion. The sad part is thus far the treatment seems that we are having some success even with the very low dosages of all the chemo drugs recommended. With a tumor reduction by 12% is amazing at this point. Why would an insurance company not support that?

The sad part is for the people that are not in a position to get the specialized treatment for their cancer as I am blessed with. Are you thinking that I’m promoting the new health care plan, you are wrong. Though I believe we need to do something, I do not believe the route we are taking is the correct path. The governments track record in running some things like postal services, Medicare, social security and I could go on, but will not and end this. All I can tell you is that the people that I talk to on the phone nearly every week to settle insurance issues are really very nice.

The bright side is that Summer is here in Kansas and I’m here to enjoy another day with my wife, dogs, family, and friends and is all I ever look forward to.

This brings me to a point I would like to make and try to talk about each posting and that is to Enjoy the Day and to do what we all can to reduce all “stress” from our lives. And in today’s world stress is more that abundant in most people’s lives. Though stress is not the only cause or possibility for cancer and other diseases, but I believe it is a large part of the puzzle. Your mind, body, and attitude play a very large role in this journey and how it will play out. You need to have faith, a passion for life, compassion for others, and reason to keep fighting cancer or all that you will see and go through will work on your mind and thoughts. And your mind and thoughts are just the things you need on your side and to keep positive, so guard your thoughts in this time.

Till next time You Keep Fighting Cancer and Enjoy the Day.

You Fighting Cancer – Week 19 Burzynski Treatment

Colon Cancer Awareness

Lab report update; I’ve had a week off of Tykerb due to low platelets – 29K. This week’s lab shows an improvement in platelets to 41K. Though I’ve noticed this week that my hemoglobin and white blood count have drop a bit. After talking with my doctor at the Burzynski Clinic, I found out that it has not dropped too low to worry about at this time.

I will be getting another round of Vectibix next Tuesday and will see my oncologist to understand how things are going with my blood work and my rash.

I have been turned onto some other products that can help with the rash. These items are from a burn center and the types of products that they use on skin. For cleansing, this center recommended; Aloe Vesta Cleansing Foam.  And for the burning and itching of the rash they recommend; Glucan Pro-Cream 3000. I have not used either of these yet, but I will be.

I feel at times that I have been to the expert’s academy on Colon cancer that has metastasized to the liver. With all the surgery’s and different chemotherapy drugs that I’ve been through to date I now know what to expect and what you’re not told. The number of books and video’s that Lisa and I have read and watched are countless.

The point of that statement is that if we can help anyone to understand what took place from the day we learned that I had cancer to all the different side effects that you may experience.  The different foods that we have learned are good and those that we all need to stay away from. Please contact us. We will share what we know.

Speaking of food, we just watch a very informative video last night that I would recommend that everyone take the time to watch. It’s call Food Inc. and it will or should change the way you purchase food, especially fast food.  If for no other reason, watch this for your kids or grand kids. It’s that important. You can check this video out I’m sure at any Block Busters or even your library. Hint: I’m so looking forward to the Farmers Markets to get back.

Please don’t forget that if you did not get a Colonoscopy last month please do so. News video link to Colon Cancer Testing promoting this test. Also, you may be able to pick-up a FREE early detection colon cancer screening kit from stores like Walgreen’s or for sure from your doctor. Ask for a ColoCare kit, that you do at home.  This test should be done once a year if you’re over the age of 50. If caught in the early stages, colon cancer is 90% curable.

I was sent an email that had a link on a drug call DCA that 2 years ago showed great promise for “curing cancer”, but since the drug is so inexpensive to manufacture and that makes it non-profitable for a pharmaceutical company to do any research since that can not get them their 7 year patent on the drug. So, the best I can find is that for the most part it has be swept under the carpet, but I did find one web site that seems to have some resent information– The DCA Site. 

But I have been reading many new disturbing articles about these pharmaceutical companies’ getting the FDA to give them "fast track" status on new cancer drugs to get them on the market and how amazingly their stock prices jump? I hope cancer isn’t about the money, but these type articles made me rethink that.  

Well until next time – You keep Fighting Cancer and ENJOY THE DAY!