20231125 Clinical Trial Update:

Hey all!  It has been about six months since I last updated my clinical trial/cancer treatment on Facebook or www.jukemo.com.  I apologize to anyone looking for more frequent updates. My intention when starting the first clinical trial update was to provide a weekly, then monthly update, as dictated by my doctor appointments.  Once I was past the monthly updates it got easy to get off in the weeds concerning the topics I wanted to discuss.  It becomes especially difficult to make sure what I write is both meaningful and accurate.  Finding something meaningful is a bit easier because anyone reading from Facebook already knows me and most people have a connection to someone with cancer.  The accuracy gets a bit more difficult for someone writing to you with zero medical training.  The gap in postings; I really have no reason for the gap other than I just wasn’t feeling it.  I really haven’t had any treatments since around April of 2023.  It was also around this time when I had been admitted to the hospital for around two weeks to deal with another pain crisis.  This one was a particularly bad episode and I was exhausted when I got out.  My Palliative Care doctor had been researching the possibility of having an intrathecal pain pump implanted.  The idea here is that a pump implanted in my right side would deliver a base rate of medicine directly into the spine and to the main source of the pain.  It delivers a much lower dose of medicine than orals (1/100th) and none of the typical opioid side effects.  This pump has been a life-changing device and has kept me out of the ED on several occasions.  I can dive into the details of the pain pump in another post if anyone is interested. 

In the meantime, I had been doing some research regarding my left side diaphragm which was paralyzed during one of my first surgeries.  My research led to a procedure called a diaphragm plication surgery.  There are two major nerves that start at the anterior rami C3-C5 root nerves and pass through the neck, by the heart and lungs, and to the diaphragm.  These major nerves are called the phrenic nerves, and they provide the signals for the diaphragm to move up and down to control your breathing.  If either (or both) of these nerves are severed or damaged, the affected side of the diaphragm stops receiving the signals to move.  The reduction of a person’s ability to breathe depends on the severity of damage and other underlying comorbidities such as obesity or disease.  I have estimated that I may have lost up to 30% of my breathing capacity after my initial surgery in 2008.  It is much worse when I try to exert myself, such as walking fast with a group or exercising.  A large part of this is due to the “uncontrolled” diaphragm naturally moving to an elevated position.  This takes up space that the lung could use to expand even if the diaphragm is paralyzed.  The plication surgery allows the surgeon to go into the mediastinum and suture the diaphragm to itself. This opens this space back up allowing the lung to expand and increase the lung’s volume.  I had the surgery on May 22, 2023, and it was a success for the most part.  The surgeon was able to lower my left side diaphragm, but not as much as we had hoped.  My diaphragm had been in this position for almost 15 years, and it began to tear when they separated it from the bottom of the lung.  The surgery was still effective and I felt a slight increase in my ability to breathe almost immediately.  Now it was up to me to do the work required to take it the rest of the way, or at least as far as my body and mind would allow.

One of the driving forces behind this surgery was that I needed to be off supplemental oxygen during the day to qualify for at least two clinical trials that I might be qualified for.  I have been able to get off oxygen (at least during the day), but I did not have the markers they were searching for in these particular trials.  This left me in an unfamiliar position and I was told that I had exhausted all standard treatments for my type of cancer. That’s it. I am out of options as far as approved forms of treatments are concerned.  I knew this day was coming, but I always had a treatment or two in my back pocket.  But time moves on and so does the disease. Time to pivot and find a new path forward.

As I was working on this post (a few weeks ago), I received a call from my oncologist that there may be a clinical trial for me at Sarah Canon Research Institute.  This is the same research center and oncologist I had when I first moved to Colorado.  Dr. Falchook is the “clinical trial guy”.  That is all he does so he knows what is available and might show signs of promise for my type of cancer.  That said, the trials I have left are not specifically designed for Neuroendocrine Tumors of the Thymus.  The trial drug is called NXP900 (it doesn’t even have a name yet).  This is an SRC Family of Kinase inhibitors.  It looks like this type of inhibitor may have an effect on the growth of my type of tumor, but it is the first trial in humans, so no one really knows yet.  In fact, I am the 3^rd person in the world to receive this drug.  Pretty weird to think about, really.  I was able to start the trial on November 6, 2023, so I am already a few weeks into this trial.  It has mostly been a lot of doctor visits, labs, vitals, scans, and red tape.  So far, I have had some pretty severe fatigue, some breathing difficulty, mental focus, pain, and mild nausea.  This is a dose escalation trial, so the side effects may get worse as the trial progresses.  I guess the idea here is to keep escalating the dose until I just can’t take it anymore, or there is still significant growth.  I have been pretty clear with my doctors at this point that my main focus has shifted from pure survival of this disease to Quality of Life.  There is a certain freedom that comes with hearing you are Stage IV Metastatic with no standard options left.  It kind of puts you back in the driver’s seat.  I decide what is right for me.  I still respect and listen to everything my doctors advise, but ultimately, I make the decision on how I want this to go.  I just know I will NOT spend what time I have left lying in bed or feeling sick and in pain all the time if I can help it.  I will at least give NXP900 a chance to see if it slows or stops the growth of the tumors or until the side effects inhibit my quality of life.  I used to think the fight was everything and you stop at nothing until you are dead or beat the cancer. That attitude left long ago. I want to live, but I’m not going to stop living to do it. 

I will be posting on my blog and Facebook page again while going through this clinical trial and even after as I transition from treatments to self-preservation, healing naturally, and enjoying what I have left. These are not recommendations or advice.  It is just my life and my journey with cancer.

I would like to give a shout-out to my friends and fellow classmates, Deb DeLieto and Debora Burdsall.  They are both going through tremendous adversity right now and fighting their way back to their lives like warriors!  You both inspire me every day!  Keep posting, keep pushing, and keep kicking ass!

Take care everyone,