Monday, March 19, 2012

Hope Is All We Need

A few months ago I stared at an image of my brain splayed across a computer screen. As we all know by now, tumors congest every orifice and ventricle to be found. On that day I asked my neurologist to send me to a neuro oncologist to discuss what possible medicinal options I may have. (and I do not mean smoking weed!) In October 2011 I met Dr. Barth , who has treated patients in tandem with my current neurologist many times. At our consultation he had already reviewed my case and explained that he wanted to retrieve samples of tumors I had removed years ago from Hoag Hospital, and run tests on them at Clarient Laboratory to see if we could pinpoint a specific medication that may best target my own personal tumor biology.

There are many different types of tumors, derived from different types of cells, and relying on different pathways to feed themselves (from my elementary understanding!) Every person with NF2 has their own individual tumor chemistry. That is why while Gamma Knife has successfully stagnated every one of my 13 treated tumors, I have met people who did not have any response at all to the same treatment. There are over 400 different types of drugs that have the potential to stop the proliferation of tumor cells, and Dr. Barth likened trying random drugs to finding a needle in a haystack. He postulated that mapping my tumor DNA to decipher my unique tumor genetic code could lead us to a tailored medicinal assault to cut off my tumors' blood supply and theoretically starve all of them out. Now there are different types of tumors just in my own body, but Dr. Barth said it is likely that they all rely on the same pathways.

So this week I found myself in Dr. Barth's office waiting to see if he has had any luck in this ridiculously modern endeavor. Dr. Barth came in with a warm hug and then informed me that what he had to share was incredibly cutting edge, that nobody is doing this yet, that it is brand spanking new, and that I am literally his first patient and one of a handful ever to have this testing done. He then told me that the testing successfully told him which types of receptors my tumors are expressing, and with this information he has identified which medication has the best chance of potentially slowing or stopping the growth and development of tumors in my body.

Can we just have a moment of silence as we all absorb that information?

Theoretically, he has identified a medication that could SLOW THE PROGRESSION OF MY TUMOR GROWTH!!!!!!!!!

He then said he would understand if I am unwilling to try, since this is all so new, and I may not want to be a guinea pig. Are you kidding me? I was born to be a guinea pig! Einstein said that "Insanity is doing the same thing over and over and expecting different results."

My grandmother, uncle, Mom, and numerous friends and amazing people I have known have been born with NF2 and been hacked and radiated to death all in the pursuit of a tumor-free existence. They all basically became deaf, blind, paralyzed and alone, trapped in disease ridden bodies that gave out before their lives had even had a chance to start. I am willing to try absolutely anything different. Dr. Barth could tell me I may grow a third arm and I would do it!

So, the next obvious step was to ask, "What is it???" It is called Pazopanib, also known as Votrient. You all have google, so I'll let you research for yourself, but the only significantly reported side effect is diarrhea. Dr. Barth said this apologetically, to which I raised my hands in the air as to mimic the scales of justice and asked, "Brain tumors? Or diarrhea?" We all smiled in response as though the three of us in that room knew something amazing, and we did.

There is one caveat, Pazopanib is FDA approved for kidney cancer, not NF2, and insurance does not cover off-label usage of medication. I casually asked how much the medication costs out of pocket and was told $9,000 a month. A MONTH. Dr. Barth said I need to be prepared for a fight with the insurance company, and I told him I will win by any means necessary. I will write letters, appeal, file whatever papers need to be filed, and if Medicare will not approve me I will write GlaxoSmithKline ten letters a day with pictures of my children attached until they underwrite the medication.

I will get the medication, and it will slow these tumors. Bossy, aren't I?

Now, I feel the need to be realistic because a lifetime of reality has taught me that there is no such thing as an answer. Consider that: no answer is ever absolute, nothing is ever forever, and life by nature is chaos. Fairness does not exist. It is why I am not Christian, I cannot abide by a belief in judgement. Life is not fair, why would death be? Most people believe that prayers and maybe a drop of karma should make a difference, I believe that if that were so entire countries would not be famished and angry in this world. None of us know. Know what? Anything. We know nothing.

So please do not assure me this will work out. I really think that given my current situation in life I will be able to start treatment in due time. There is a chance I will not be able to, because there is always a chance. I may take the drug, have a new MRI, and find that my tumors are shriveling up and screaming a little as they melt. I will believe it when I see it. In the meantime I am haunted by that image of my brain, and every time I close my eyes I wonder if they will open again. I wonder if they will open to darkness. I wonder if I will live, and when I will die. The difference is that now I really and truly have hope. A good man once famously said that love is all we need, but I say he was a bit off. Hope is all we need.


Karen Putz said...

Hi Olivia, this my first time here and I enjoyed reading through your posts. I can feel your passion and energy coming right through! My daughter's friend has NF2 and several of my friends. Go forth and kick butt!

Diane Ellis said...

Hi Olivia! This is Diane Ellis; Tishy's friend. I just paid a visit to your blog. I am soooo very happy at the possibility of the new drug that your doc told you about. I wish there was something that all of us could do to appeal to the FDA. $9k a month!? They've got to be kidding! You are a very brave young lady. I commend you. And, you write so beautifully! HERE'S TO HOPE! Love, Diane xo

Diane Ellis said...
This comment has been removed by a blog administrator.
Olivia Hernandez said...

Thank you so much Diane! This is all so new the FDA isn't even an issue yet. We all know the process for getting anything approved by the FDA is really long. That is why most NF researchers test drugs that are already past the first trial phases (have been found to be safe for human use and to show some efficacy) so that we can have a bit of a head start on each drug we try. I also understand the need for the insurance company to only approve drugs for their intended use, as I told Dr. Barth, I will fake kidney cancer if I have to HAHA

Nancy Appleby said...

Hi Olivia. Wow, this is cutting edge medicine! SmithKline Galaxo could be receptive to you if you could get their attention. You would be a wonderful public relations plus for them. You are such a great writer, so honest and down-to earth. Much love to you and your family.

Michael John said...

I love my beautiful amazing cousin! I keep you in my prayers often. If their is anyone that has the strength to fight this it's you! Hope to see you soon again.

Olivia Hernandez said...

I love you too MJ and thank you! You need to bring the fam and come visit soon :D Text me I lost my contacts!

Donna Zimmerman said...

Bravo Olivia!!- I'll add Pazopanib to my list of potentially effective drugs against NF 2. So far, there is Afinitor aka RAD100, Avastin, Angiomotin. None yet FDA approved to treat NF2 though. You might be interested to know that House Research Institute is planning a Clinical Trial very soon using Afinitor and my daughter plans to participate. Novartis will provide the med at no cost. Keep pushing - I've found that you have to take control of your own health care and be assertive. That's the only way to get what you want.

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