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A thank you to all who have supported me through the fundraiser set up by my sisters and a brief update on where I stand on this journey

May 29, 2015

Moved Beyond Words

I am not even sure how to begin to put into words what all of this love and support means to me.  Since this fundraiser began, I have been able to get financially back on my feet, take care of some outstanding medical bills, resume my monthly vitamin and herb regimen, see several doctors who are not covered by insurance and explore other treatment options. I have also set up an incredible regimen of self-care to help manage pain, treatment side effects and cancer fatigue: weekly acupuncture, weekly Medical Qi Gong classes, weekly osteopath treatments, monthly massages, visits to an incredible holistic doctor…….the list goes on. Even something as seemingly little as taking a taxi instead of walking home on days where I am just too tired or in too much pain to be on my feet anymore…having that as an option on some tough days has truly increased my daily quality of life. I am so unbelievably grateful and humbled by the incredible generosity and thoughtfulness you have shown me. Many of you I have seen in person the last two months and I am sorry if I have not been able to say thank you directly due to where we are when I have seen you- I honestly am not sure if I could even hold back the tears of gratitude long enough to be able to get out the words I need to say in person.

I wanted to give you an update as to where is where I stand right now in regards to my current treatment:

Last year, I had genome testing done by a private company called Foundation Medicine and found out many unique details about my cancer. This testing opened up a lot of potential doors in regards to treatment and opened the door to thinking outside the box of standard care for colorectal cancer.  The issue is, trying to find trials or doctors that will treat based on these results is incredibly difficult. I am blessed to have some key people in my life who know a great deal about how the “cancer system” works and they have been helping me search the past year for potential clinical trials/treatments that could be beneficial based on these results.  From the testing I did, one thing we found out is that I have a rare mutation called HER2+.  This mutation is found in about 1% of colon cancer patients so it was quite a shock that we found this in all of my tumor samples.   We came across many different trials that focus on this mutation, but none where the right fit for me. Then, about two months ago, a new trial came on the radar and right away we felt this might be the right path for me and could potentially really work with my particular cancer subtype. It took about a month of scans, biopsies, etc. to find out if I was eligible. The day I found out I was able to be part of this trial was one of the happiest days I have had in a very long time in regards to this wild cancer journey I am on.

The trial combines two drugs: Herceptin and Perjeta. These two drugs are often used in the treatment of breast cancer, but have never been used in colon cancer before. They are not chemo drugs, they are proteins that work by attaching themselves to the HER2 receptors on the surface of cancer cells and block them from receiving growth signals. Basically, it prohibits the cancer cells from “eating” so the theory is, without being able to receive any growth signals, the cancer cells should shrink and eventually starve to death.  I receive the treatment once every three weeks at Columbia Hospital and I have just completed my second round. I am feeling pretty good, the side effects are nothing compared to the side effects I was having from my recent chemo regimen. I will do a PET scan in about two weeks to see if there have been any positive effects yet. If it seems to be working, I will continue this course of treatment. If it does not seem to be working, there is an immunotherapy drug that just came on the market which is showing promising results and due to the genome testing I had done, it may very well work for me. This drug is not covered by insurance, but thanks to your incredible generosity, I have sufficient funds now to pay for the drug for a few months if I need to go this route. I am truly hoping that the treatment I am currently on will work, but I am also realistic that it may not, so having another potential viable option is quite amazing.

Again, thank you from the bottom of my heart for the outpouring of love and kindness during this time. I am truly blessed to be surrounded by such an incredible support network. I would not be able to get through all of this on my own and I will be forever grateful for all you have done to make this journey easier. I cannot predict what the future holds, but each day I am here I will continue to move forward and face this disease with grace, strength and courage.

With all my love and gratitude,

Kristen

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