3 Changes Coming To Clinical Trials

Lessons Learned, Uncategorized

Clinical Trial Changes

If you have a “rare” cancer that doesn’t have a great standard of care, chances are you will be offered a clinical trial. To the general public (which is who we all are before that diagnosis is presented) clinical trials sound like a scary thing. To a cancer patient being told there is no cure, a clinical trial is a lifeline being tossed in a stormy sea. IF you catch it, it MIGHT help save your life.

So how do you pick a clinical trial? Well, first you have to find one that you qualify for. We’re going to assume that you have a doctor who is really helping you and is presenting you with some choices. So you have a couple of clinical trials and the “standard of care” to choose from. How do you decide? Right now, it’s a guessing game, but all of that will be changing rapidly as technology and open access data become more commonplace in the process.

  1. You will have more concrete data to help make decisions. I have seen some pretty impressive technology being developed by Clalit Research Institute in Israel that will help a doctor walk through a list of weighted questions with a patient that will help them make this difficult decision. (That program was developed using data made available from a clinical trial, and as more data becomes open access, I think we can expect to see more applications like this developed.) Each patient will be able to rate a list of possible side effects and based on their feedback, an algorithm will provide guidance on particular trials.
  2. You will know more about what “successful” patients look like. As data begins to become collected in one place, it is easier to compare patients on a genomic level. Researchers will be able to compile profiles of successful patients to help determine who has the greatest chance of success on a trial. My son participated in a clinical trial where one patient was doing really well. We had no idea if David would have the same results because there was very little data to tell us why the first patient was successful.
  3. The system will start to find you. Right now, clinical trials are found largely by patients and doctors sifting through websites like clinicaltrials.gov to find possible trials. In the future, doctors will enter your information into the computer, and then you will be pre-qualified based on your exact diagnosis and personal information. The computer will then present a list of potential trials that you can choose from.

This all might sound a little too good to be true, but the fact is, the infrastructure is already in place. Cavatica.org is an open access research platform that Dragon Master Foundation and others have been funding for more than three years now. It houses a patient’s full genome and biosamples from the patient, and sometimes the patient’s parents. It also links to the patient’s clinical records so we can have a longitudinal view of that patient. I believe it is the single most complete picture of a patient you can get, and we are working hard to make it available to everyone. (At the moment, it is largely working with pediatric brain cancer data, but the platform is built to expand as funding becomes available.)

Data like this can take a lot of the fear and guessing out of treatment, and it should lead us to more successful treatments and cures. We are on the cusp of a meaningful shift in cancer care, and I’m excited for this to start really impacting patients lives.

One Small Gesture CAN Change the World

Dragon Master Foundation, Uncategorized

Today is the halfway point in the Revlon Love is On Challenge. We have raised over $21,000, which far exceeds any online fundraising we have done for Dragon Master Foundation in the past. It shows that we are growing as a foundation and that people are starting to really understand and support our mission. I really wanted us to be at $50,000 by the end of the day today, though. Hitting $50,000 today would mean that we have a guaranteed pitch meeting with Revlon to promote Cavatica — an open access data platform that will dramatically improve the cancer research process. We have until midnight. I haven’t given up hope.

My heart may be broken, but I don’t want yours to be. 

There are literally thousands of people who have the potential to read this message. If each of them donated only $10, we would far exceed our goal. There are many times in this life that we are helpless. We sit and watch as good people die from a disease that seems unstoppable. I’m here to tell you that it is stoppable. We are seeing breakthroughs with precision medicine efforts, but if we want them for everyone we must take action. Precision medicine initiatives are only as good as the data that drives them. You’ve seen the photos. Right now, a family sits with their child knowing there is nothing else to be done. For those of us who have been there, there is nothing we wouldn’t do to keep you from knowing that pain. Wives continue on without their husbands because a nasty beast stole them away right in their prime. Children grow up without mothers because cancer stole them from their family.

This project has the potential to help all of mankind. I don’t expect you to devote your life to it. I know you have jobs and kids and other responsibilities. All I’m asking is that you realize what an amazing opportunity this could be for all of us, and maybe skip that extra meal out this week. Donate two days worth of Starbucks to our cause — TODAY. I promise you we will make the very most out of that donation.

You can donate here: https://www.crowdrise.com/DragonMasterFoundation-Revlon2016

It’s Kind of a Big Deal

Dragon Master Foundation
Wish I knew who to credit for this pic because it is awesome.

Wish I knew who to credit for this pic because it is awesome.

We get a lot of questions about Dragon Master Foundation, and whenever I have the chance to talk to someone about it, the response is amazing. They always end up saying “Wow, that’s such a big deal!” People are so generous with their support once they understand the project. The problem is, a lot of people don’t understand what we are doing and why it is needed. So I thought I’d take a moment to explain a little bit about what makes this project so special.

When David was sick, we were inside hospitals for days at a time watching people do their jobs. Technology is everywhere – from the patient bedside to databases in some unseen corner of the building. However, all of that technology seems to be locked inside each institution, with very little ability to share information from one hospital to the next.

It is like  being a horse with blinders on. You can only see a small part what’s really out there. You get a myopic view of the world. Unfortunately, that is the world most cancer doctors and researchers face. They long for more information, but it is largely out of their reach.

You may be thinking, “But what about the internet? Can’t they just send their information back and forth?” The short answer is no. Between HIPAA, different technology formats, and the sheer size of data, even the most collaborative hospitals have trouble sharing all the information researchers want to access. Collaboration would mean that a database would quickly need to warehouse petabytes of of information – a task that has only been tackled by the likes of the NSA or Google in the past.

It is an overwhelming task, to be sure, but for the first time in history, it is possible. It is possible to house genetic information and clinical data in one place so that researchers can really see the “big picture” of a patient’s health and furthermore, they can compare that patient to other patients. They can start to see why a drug works for one patient and not another. They can start to make sense out of things that are seemingly random.

It will be four years this September since we were dropped into this cancer world. I’m not a doctor or a researcher, but I’ve talked to as many as I could over that time, and every one of them has said a database like this would be an asset to them. EVERY ONE OF THEM.

And yet, we continue to spend money on tiny projects that help a single researcher or a single hospital. Please don’t misunderstand. Every researcher needs funding. Every hospital needs more help. But this is a situation of not being able to see the forrest for the trees. We need to build an infrastructure for the research data if we ever hope to move at a pace that is faster than cancer.

The good news is, we have made amazing progress. We have joined forces with the Children’s Brain Tumor Tissue Consortium, Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Chicago’s Lurie Children’s Hospital, and Children’s Hospital of Seattle to take the database they are working on and grow it to a scale that can help pediatric and adult patients. The data is already being collected, which is a great and wonderful thing. However, it means that we are already at a place where we need vast amounts of funding in order to continue to grow.

I wake up every morning more sure that this database will change the way they do medical research. I have hope that people will begin to understand the vision that that this database represents, and that they will focus on helping us build it. You ABSOLUTELY CAN make a HUGE difference in the fight against cancer. Please share the mission of Dragon Master Foundation. Like us on Facebook ( http://www.facebook.com/DragonMasterFoundation ). Follow us on Twitter (@dragonmasterfdn and/or @amandahaddock ). Host a grass-roots fundraising event. Something as simple as dining out at a local restaurant that will donate proceeds can be a huge help with both raising money and raising awareness. Cancer is a beast that is taking lives. You can be a dragon master. Please join us today!

52 People You Need to Meet: #1 Nikki Austin

52 People To Meet Posts

What I Wish I Knew Before my Son was Diagnosed with Cancer

My only son Matthew was diagnosed on September 7, 2012 with DIPG, an incurable, inoperable form of brain cancer.  He was 10 days shy of turning 10 when he was diagnosed.  He battled bravely for 14 months and passed away in my arms on November 5, 2013.

Although there is nothing I can do to change the events that have taken place, there are several things I wish I knew before Matthew was diagnosed.

I wish I knew how much our family was loved:  Before Matthew’s diagnosis, I knew that my family was liked.  We have a wonderful circle of friends and we live in a great community.  However, I could not comprehend how much we are LOVED until Matthew was diagnosed.  The generosity that we have received is beyond anything that I ever could have imagined.  It’s overwhelming, incomprehensible, humbling, and quite simply amazing.  Two months after his death, we are still reminded daily how much we are truly loved.

I wish I knew what this diagnosis would do to my relationships:  In my naïve mind, I thought something as major as your child being diagnosed with terminal cancer would somehow create a clean slate with the relationships in my life.  Previous issues would be erased and everything would start over fresh.  Everyone would realize as much as I had what really matters in life.  I was sadly naïve in this area.  Some relationships have been made stronger than ever.  My husband and I are closer than I ever thought we could be.  My friends and close family members have rallied around me and supported me in ways that I never even realized I needed.  They were my strength for 14 months and continue to be.  I’ve also learned that if the death of my son isn’t reason enough for some people to forgive, forget and move on, then I don’t know what is.  This journey has told me everything I need to know about the relationships I have with the people in my life.

I wish I knew not to take simple moments of life with my children for granted:  Of course I’ve loved my children since the day they were born.  But like any mother, I got frustrated, yelled when I shouldn’t have, probably said “no” more than I needed to and took for granted the time we had together.  Hearing the words “no cure, maybe a year if we’re lucky….” immediately changed that.  There is nothing like knowing your son is living on borrowed time to make you cherish every single moment together.  Someone once said “it’s like living life in High Definition.”  Every sunny day is more beautiful, every laugh is more musical, and every achievement is more remarkable.  I savored every breath he took, every word he spoke, every squeeze of his hand in mine as we’d walk, his smell, his voice, his everything.  It’s sad that it took an experience like this to make me realize how to cherish the everyday little moments I have with my children, but I’m grateful that I’ve at least learned to live in HD.

I wish I knew that karma is as make believe as unicorns:  I’ve had a good life.  Yes, I’ve had challenges, but I believe that these experiences have made me stronger and made me who I am.  I assumed that because we are good people who live a good life that the universe, God, Buddha, whoever, will take care of us.  I was wrong.  Bad things do indeed happen to really good people.  The theory of Karma- if one sows goodness, one will reap goodness- was blown apart the day Matthew was diagnosed.  What could my 9 year old son have done to deserve a cancer diagnosis?  What could we, his parents have done that was so awful to deserve this?  Is this a lesson?  Is God trying to teach us something?  These are answers I don’t have and don’t know that I ever will.  But I do know that the unthinkable CAN happen to us.  But the idea that karma is somehow at work- I’ll never believe that theory again.

Each Journey is Unique:  The day that Matthew was diagnosed, a neurosurgeon at Seattle Children’s told us “It’s important to remember that Matthew’s tumor is unique.  No one knows how it will behave, so don’t think that the statistics will dictate his journey.”  I wish I had known that just as Matthew’s journey was unique; my grief journey will be unique as well.  It’s a wonderful thing to be connected with amazing moms who have lost a child as well, but when you start comparing your journey to others, that can be harmful.  There have been times that I’ve felt that I’m not “sad enough” if I have a good day.  Deep down, I know that I love my son more than life itself and the amount of tears that I cry are not a measure of that love.  I’ve had to learn that I will grieve however I need to grieve and it will happen when I need it to happen.  Comparing myself to others only serves to make me feel that I’m not “doing it right.”   Had I known this early on, I think I would have saved myself a decent amount of guilt.

I wish I knew how strong I really am:  There have been too many moments to count that I’ve cried “I can’t do this….I don’t know how I’ll survive.”  Guess what, I’m doing it.  I’m surviving.  I took care of our son for 14 months better than any other person could have.  I comforted him when he was sick, scared, and in pain.  I kissed him goodbye every day for 6 weeks as he went into his radiation treatments and told him how brave he was.  I watched as poison dripped into his veins and told him how proud we were of him.  I told him about Heaven and Jesus and eternal life and eased his fears about death and leaving his mommy, daddy and sister behind.  And I held him in my arms and comforted him as he took his last breaths while telling him that it was ok, it was time for him to go.  So yes, I am strong.  I am so much stronger than I ever even imagined.  Fear will never hold me back.  If I am strong enough to live through these past 16 months, I am strong enough for anything.

As I read through this, I’m left wondering “What if I knew all these things before Matthew was diagnosed with cancer?  What would I have learned?”   I guess this is how it was meant to be.  Although it would have been helpful to know these things 16 months ago, these were the lessons I was meant to learn.

With Matthew in my Heart,

Nikki

http://www.mama2matthewandmegan.blogspot.com