Research Pharmacist by day.. Research Patient by night - Update 1 of 3

Howdy ya'll.  Less than 2 months left of 2020 and I am feeling like 2021 can't come soon enough!!  Since it's been a while and there is soooo much to update you on I will be posting 3 different blogs with the recent events of my journey "on the other side".

Update 1:  The Research Pharmacist that Became the Research Patient

My motto

So after I recovered from my abdominal surgery my oncologist and I decided to go with a clinical trial (study).  I was able to enroll in an immunotherapy study that I will refer to as "Study #1".  This study involves two immunotherapy drugs known as checkpoint inhibitors and patients receive one drug that is a PD-1 inhibitor (like Nivolumab for all my pharm friends) and one drug that is a CTLA-4 inhibitor (like Ipilimumab).  The kicker is - all patients in the study receive the PD-1 inhibitor but some patients receive the CTLA-4 inhibitor and others receive a placebo.  The study team and patients are blinded, meaning that they don't know if the patient is receiving the CTLA-4 inhibitor or placebo.

The study involves a 6 week (42 day) treatment cycle with both infusions (PD-1 inhibitor and CTLA-4 inhibitor/placebo) being administered on Day 1 and one infusion (PD-1 inhibitor) being administered on Day 22.

Working during my 9/9 infusion

I started on the study and received the two infusion on July 29th.  Overall, things went pretty well during the first 6 week cycle.  I didn't really experience any issues during the infusions and just had a little fatigue for a day or so after the treatment.  

After the first 6 week cycle my CT scans showed slight enlargement in the tumors but the study team had already warned me that this is common with immunotherapy due to a phenomenon called pseudoprogression.  Instead of the tumors really growing due to cancer cells, the increase in tumor size is observed or new lesions appear, because immune cells are infiltrating the tumor.  Based on this knowledge, we assumed the increases in tumor size were due to pseudoprogression and moved forward with a second 6 week cycle on September 9th.

On October 19th I had another set of CT scans to see how things were going.  Unfortunately, at my next scheduled infusion appointment on October 21st (what would have been Cycle 3), we reviewed the scans and they showed that the tumors were continuing to grow.  My study team was concerned that this may not be pseudoprogression any longer and may be true progression.  Hard part about all this is - there is no clear answer in these cases.  An additional concern was the fact that during the physical exam, my oncologist could feel two areas that she couldn't feel before which added to her concern that this may really be progression.  Considering the results from the CT scans and the physical exam we discussed possible treatment options which include other clinical trials or chemotherapy.  Ultimately I opted to try a new clinical trial (more on that in Update 3 🙂).

My cat friend supervising my wood cutting

One of the biggest lessons I have learned on this journey is how very hard it is to make decisions.  Things never seem to be as black and white as we had hoped and instead are much more in the gray zone.  While I wish I had a crystal ball that could show me the future, I don't.  Truth is, many of the decisions I have made have been based on what we do know and some gut instincts.

Keeping my positive outlook and continuing the fight!!

#OneGoal

#EndCancer