Monday, June 21, 2010

You Fighting Cancer – Burzynski Treatment Week 27


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!

Sunday, June 13, 2010

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!

Friday, June 4, 2010

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!