About Me

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This blog really isn't designed to be about ME, however I am willing to share my life with you so that you can gain knowledge about living with cancer, the importance of continued research in cancer fighting drugs, and how the FDA's decisions on releasing or pulling a drug from cancer patients can greatly impact many lives. While my cancer is advanced breast cancer, I am fighting for all cancers, and actually life in general. My life has been directly affected by many other cancers as family members, friends and chemo buddies have died from various cancers. Each one of these people have shaped my life and I am fighting to honor their fight, and to continue fighting for all of us touched by this horible disease in some way. Most of all, I'm fighting for the right of my 11 year old daughter to continue having a healthy mother, and for my Husband and Mother to keep them from the pain and torment that comes from seeing a loved one die from cancer. The FIGHT IS ON!! Please join me!!!

Wednesday, December 29, 2010

The Fight is On!!

December 16th, 2010 , treatment day for me.  No big deal, I have cancer treatment every other week for advanced breast cancer.  Almost two years now of a treatment drug called Avastin, and to look at me, you would NEVER know that I battle cancer.  I like it this way!  I was diagnosed with cancer 18 years ago, and have been fighting it non stop, with the exception of a few years hear and there, but no matter what, it would always come back.  Treatments?  I've had them all!  Literally!!  So when I was ready to quit treatment two years ago, as it didn't seem to be helping, and gave me absolutely no quality of life, you can imagine how excited I was to hear my doctor tell me of a new drug that was just approved for the use in advanced breast cancer, and that this drug didn't have the side effects that the previous chemo had.  My mind was wondering, "why on earth am I just hearing about this"...."Let's do it!" 
That's where this story begins.  Yes, my quality of life came back!  Not only that, but my tumors stopped in their tracks as if frozen in time.  We can all live with cancer, as long as one of two things don't happen, 1-the cancer continues to grow taking over vital organs and mechanisms in the body needed for survival, or 2- the cancer treatment itself doesn't kill you first.  Thankfully, my cancer responded to the drug well.  Yes, there are some serious side effects, as there are with all cancer drugs.  I take blood pressure medicine daily, and have to be aware of what my body tells me so that I can report anything unusual to my doctors.  That's not a big deal to me.  I learned about 8 years ago, that I have to be my own advocate in my health care.  So, yes, I bug my doctors all the time, get things checked often, and so far I haven't had any side effects other than the blood pressure. 
So my life was back!!  Riding horses often with my family, camping, floating the rivers, and working all became my life again.  There are times that my life seems so normal that I actually forget about cancer.  I often have to do a reality check with myself and remember that this drug may continue to stop working as the others did, but for now I am so thankful to feel well.
Ok, back to December 16th, I came home from treatment and went to sleep.  Treatment only makes me sleepy for the day because of benedryl given directly into a port that goes into my main artery, not from the avastin.  I woke up that evening and the news was on.  I heard the words FDA and Avastin, so I quickly rewind to hear the story.  I had an idea this was going to be happening, since they have threatened to do this for the past 6 months, but I couldn't believe my ears!!  The FDA recommends that Avastin to no longer be used as a treatment for advanced breast cancer due to the amount of times that this drug allows a patients life to be extended is on average 2 weeks to 2 months.  They go on to say that avastin will still be available for breast cancer patients, but would not be covered by any government health care.  The private insurance companies follow the same guidelines that the government does when it comes to deciding which drugs they will cover.  The patients could pay for the treatment out of pocket, that is if you have an extra $60,000 to $100,000 a year.  That is what the generic form of Avastin would cost patients.   The FDA says that the cost of the drug was not considered into the decision, lets just assume that's true.  If the FDA is merely going by the fact that the patients lives were not prolonged enough, who decides the amount of time a drug can prolong a normal life?  Does time alone not hold value?  I'd like the FDA to look at my 11 year old daughter and tell her that they would no longer allow me to continue Avastin, because my life expectancy is short at this time.  I've been on this drug now for 22 months, and if I have had 22 months of "progression free disease" , don't you think there are others out there just like me that this drug has extended their lives by almost 2 years.  You better believe there are.  So what if I was one of the ones that only could get the two weeks extension.  Who would deny any child, mother, husband, sister, and friend that extra time they could cherish with their loved one?
I have often wondered why I am still living with cancer after all these years.  Why is it that I lose loved ones to this disease, and I don't even feel the effects from the disease?  I often feel guilty for actually LIVING my life with cancer while others are battling.  Even my 12 year old nephew Christain told his mom this, "Mom, I'm going to ask Aunt Julie why she never dies from cancer and everyone else does."  When she told me this, I thought, "Now see, I'm not the only one wondering this!" 
Now I know why I have this disease.  It has all been unfolded right in front of me.  I have to become the voice that speaks for the continuation of this drug.  Not only for myself and my family, but for everyone with every disease.  You see, if we sit back and allow the FDA to decide to withdraw drugs from their approval based on what they consider to be a short amount of time the drug prolongs a life, then we are actually letting them ration drugs to us, and play God in our health care.  I can't sit back and be quiet about this.  It is wrong and immoral!  The other claim the FDA has about serious side effects of the drug doesn't support a strong case, because all cancer drugs come with serious side effects.  Actually, don't all drugs come with serious side effects?!?!?!?  Really, don't they?  I'm sure most of us could list all the side effects of Viagra since it's shoved down our throats every time we turn on the TV.  What do you think would happen if the FDA suddenly disapproved of this drug?!?!?!?   That would never happen, because as the last 20 years have continued to show that the elected men in Washington are pretty fond of their libido.  So to claim the side effects are to risky to a terminal cancer patient is lame!!
Please join with me to fight this FDA decision, and to persuade our voted officials to vote for what is right.  Please share this blog with as many people you know.  I will be posting here every day, as I am searching for ways that my story can be told at a National level. 
Thank You!!  and God Bless!!


  1. Julie, I have seen your life and your battle. I want you to have every tool available to you to continue life as normally as possible. It is not unique that Avasitin has side effects. Every drug does! Medicine is a double edged sword. As one who has had their life closely touched by cancer, I am with you 100% of the way. It is unbelievable that you have to fight another battle with the USDA for your right and privilege to fight cancer!

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  3. Julie...I am so proud of you fighting for you and all the rest of us out there that will have to face this horrible disease at one time in our life or another whether ourselves or through a relative. I join you in this fight and will gladly share your story with as many as possible!!

    Deanna Ginther
    Sikeston, MO

  4. Thank you for sharing your story. I will definitely pass this on through my blog.
    Keep the faith and the fight!

  5. Julie, My prayers are with you. Through the grace of God, my mother's life was saved through a clinical trial drug twelve years ago, so I'm also a believer in experimental drugs. Your voice may just be the voice that saves many. May God bless your efforts to bring this to the public's attention.

  6. Thank you all for the support! You are an inspiration for me. God Bless!

  7. Julie, Thank you so much for sharing. I find it tragic that the FDA would make this ruling. I also believe treatments are meant to help improve quality of life, which it appears they did not look at. It sounds like this medication dramatically improves life quality which sounds worth it to me even if life expectency is not extended. I admire your strength and courage because it sounds like you have battled this disease with grace. Thank you for sharing.

  8. Julie, this is a worthy fight! You are brave for standing up and doing this. I didnt realize Avastin was used for advanced breast cancer. In the doctor's office I work in the docs use Avastin for macular degeneration in the eye. Keep up the good work.

  9. Pat and I support you all the way. This needs to be taken care of and keep AVASTIN available for use with breast cancer.