Entering yet another world…

Before I get to the heart of this post, let me give you a little update on my first infusion on this new but “old” cocktail. I am almost afraid to say out loud that I have bounced back pretty easily from it. The first time I was on it, I was pretty miserable, achy, feverish, and extremely tired. My mom, who was here at the time, told me one day that she was relieved when she saw me lying in a different position in my bed as I had basically not moved all day. So needless to say, I was a bit worried about starting back on the cocktail. I thought it could go 2 ways. Either as my body had been through it before, it would know how to handle it and therefore make it more manageable, or since my body has been through so much in the past two years, maybe it would be so exhausted that it would have a hard time tolerating it. Well, the day after my infusion I was baking a cake (out of a box I must admit) but to be out and about on the 2nd day was pretty impressive. In a weird way, it actually worried me a little a bit. There is a myth that says that the more side effects you have the more effective chemo is but again that is just a myth. The worst part of this infusion has been the sciatica pain that was pretty unbearable. The ovary cyst drain was successful (and the cyst was not malignant) but the nerve is still quite painful. Chemo supposedly makes nerve pain worse and I hope that the nerve will have some time to heal before my next infusion.

So back to the topic of this post. I have entered many different worlds since my diagnosis, worlds I never thought I would ever enter. I had always sat on the “health provider” side, I never thought I’d be sitting in the patient chair, I had never been sick in my life. I much prefer to be on the provider side but I must say that I have learned a lot about the other side and it gives me another perspective and understanding of my patients, especially those with medical issues. I am still learning how to navigate the medical and health insurance worlds, learning to be my own advocate, and getting the best care that I can. I have learned so much about the world of integrative medicine, including supplements and nutrition to help your body heal and tolerate chemo as well as other “alternative” forms of treatment. It is now time to enter the world of clinical trials. I thought I had more time ahead of me before I started really exploring this world but the last chemo I was on, did not carry me as long as I had hoped it would. So here I am, back at my computer learning about what are the best trials and how to get into the studies. The current hot topics in the clinical research world are immunotherapy and personalized medicine which is basically molecular genetics. Immunotherapy trials for colon cancer are starting to emerge. Immunotherapy breakthroughs have happened in other cancers but not yet for colon cancer. Last May, it was found that people with a specific mutation in their tumor called MSI-High had a great response to PD-1 inhibitors. Unfortunately, we are talking about 10 to 15% of people with colon cancer. I am in the other 85 to 90% who are said to be MSS. Two trials targeting MSS just came out, I am lucky to have a few months ahead of me to see what comes out of those trials before I sign up for one. The other important thing to understand is that once you have completed a PD-1 trial, you are most likely NOT eligible for another one. So you need to choose wisely. I have my oncologist at Shands helping but I also found this incredible Stage 4 colon cancer Ph.D. oncology drug researcher who has been sharing his knowledge with us. In the end though, the ultimate decision is yours and who am I to make that decision? We are not talking about what color I should repaint the living room, this decision can drastically and dramatically affect how much longer I will be here…  yikes…

I have decided to go the molecular genetics way first. The reason behind my thinking is that the study I have elected to do is not necessarily a treatment study but it could yield very crucial information that could guide my next course of action. I have discussed the “fruit fly” study in a post a while back and it finally opened up for colon cancer patients. I found out about the study from an article in the Esquire magazine. When I started looking into it, it was not opened yet for colon cancer. I reached out to the journalists from the Esquire magazine in the delusional hope that they could perhaps help me like they had helped “patient 0” who somehow ended up being kind of the guinea pig for the study. I did not hear back from them then but I was able to thank one of them for the article exposing the realities of colon cancer in young(er) people and for giving me a chance to hear about the fruit fly study. I was really touched by the fact that he took the time to respond and by his response. I can tell that his experience with patient 0 was life altering for him and that he truly cares. After hours of googling, I found the principal investigator and found an email address for her. I reached out to her and again was thrilled that she responded to my email personally and forwarded my information to her research coordinator. I wanted to get at the top of the waitlist. The study had received a lot of attention from the Esquire article so I feared that it would be impossible to get in. I have been pestering them with calls and emails since February and finally got a call a few days ago from the principal investigator that they had received their final IRB approval. I have an evaluation set up for September 21st to see if I am eligible for the study. I am excited about the opportunity and grateful for pilot friends who are willing to help me fly up North and for my big brother who will host me and even take time off his busy schedule to come to my appointment with me. Keeping my fingers crossed and will update you all after my visit in the Big Apple.

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6 thoughts on “Entering yet another world…

  1. I know you have more than one “pilot friend” but you know we will do anything we can to help you get up to NY!
    This is so exciting and I hope that your evaluation goes the way it is supposed to go. If you are ” supposed to do this”…..I hope you qualify!!!!!!
    If you are “not supposed to”…..then I hope you graciously accept the denial, and know in your heart that this wasn’t for you. Either way….SO EXCITING to be moving along with some action! Bring it on Sept 21st!

    Great news that you are feeling well enough to function on Day 2! I am so happy to hear that despite chemo, you are baking a cake! I don’t even do that…..XOXOXOXOXOXOXOOX

  2. I am so happy to hear that you are going to be evaluated for the fruit fly study!!! I am really hoping that you are eligible. I just love your perserverance, determination and thank goodness for that “delusional hope” of yours too.:-) Thank you for sharing your story. You are such an inspiration. XOXO

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