This is Sci-Fi Level Stuff We're Talking About!!!! - Update 3 of 3

So after some ups and downs over the past few weeks my treatment team and I have finally determined the next step and settled on a clinical trial that involves some cutting edge technology.  So sit down, grab a drink of your choice, and get ready to have your mind blown!!

What in the World is TILs??

I am currently in screening for a clinical trial that involves the use of Tumor Infiltrating Lymphocytes (TILs).  For those of you interesting in reading more about this technology please click the link to be taken to an article that explains this technology by the MD Anderson Cancer Center.  Make sure to click on the video to see how this technology works!!

In a super simplified nut shell, this trial is evaluating the technology of using T cells from the patient's tumor itself to fight their cancer.  

On Monday (11/23) I will have surgery in which a section of the tumor will be removed and sent to the biotech company.  Over several weeks they will use TILs from the tumor and multiply them in a lab until they have billions of TILs that they will use to produce an infusion - my own army of TILs!!  Once we receive the thumbs up that the cells are growing appropriately, we will move forward with the steps necessary to prepare my body for the infusion of the TILs.  

I will be admitted to the hospital for a minimum of 2 weeks (tentatively scheduled for middle of December).  For the first several days I will receive 2 chemo agents (Cyclophosphamide and Fludarabine) to wipe out my immune system.  This is necessary to enable the TILs infusion to work best.  At some point during this time the company will send the TILs product to the hospital and I will receive the infusion during the second week of my admission.  Later that evening I will receive the first of 6 possible IL-2 infusions, which will ramp up the TILs so they can really wage a war on the tumor cells! 

While this technology is super exciting, there are significant risks.  There are lots of potential side effects from the chemo, the TILs infusion, and the IL-2 infusions.  And the recovery time to get my immune system back will take months.

Jumping Through Hoops, Hoops, and More Hoops

In order to make sure I meet all the eligibility criteria they have been putting me through the ringer with tests.  They've taken lots of tubes of blood to look at my labs (electrolytes, kidney function, liver function, blood clotting, past exposures to viruses.... you name it - they are drawing a lab for it!!).  I've had testing done to make sure my heart is healthy (and it is💗) and had some testing to check my lung function (and they are strong💪).

Last week I meet with the transplant team, who will be taking care of me while I am admitted, to make sure we are all on the same page.  They gave me more information about how things will go during the two weeks that I am admitted.

This past Thursday I had my pre-procedure COVID test and it came back negative - YAY!!  

So for now I am just staying home and celebrating Thanksgiving a little early - Nathan made me turkey, stuffing, mashed potatoes, and my mom did a drive by porch drop off with some deviled eggs and my all time favorite - vegetable medley - YUM!!

I will post blog updates when I have them!!

Ta ta for now... unTILs I blog again :)

Anybody Got a Magic 8-Ball??? Tough Decisions - Update 2 of 3

Some of you might be wondering how/why I made the decision to enroll in a clinical trial (study) versus going with traditional chemo options.  In this blog I will explain the process that I went through to make this decision.  But first, I think we need to go back to the beginning and those first treatment decisions made.  I've also added some photos of Nathan for your viewing pleasure :)

Initial Diagnosis Treatment Decisions

Nathan - Pre 15 inch Hair Donation

When I was first diagnosed the treatment decisions were a little more clear cut.  You see, at that time we were able to use the National Comprehensive Cancer Network (NCCN) Guidelines to really guide the way.  The NCCN Guidelines are a comprehensive set of guidelines detailing the sequential management decisions and interventions that currently apply to 97 percent of cancers affecting patients in the United States and are the recognized standard for clinical direction and policy in cancer care.  At that time my oncologist explained the treatment options and we opted for a first line treatment based on these guidelines - radiation and low dose chemo.

When Things Go Sideways....

Nathan - Post Hair Donation "COVID Hair Cut"

Unfortunately, when it was discovered that the original cancer had spread to my right ovary (which is not typical for cervical cancer), we could no longer use the NCCN Guidelines solely to guide treatment decisions.  Instead, my oncologist at the time had to improvise and suggested that we do real deal chemo (not the low dose stuff we did initially) with Avastin for 9 cycles and then another 9 cycles of Avastin alone (I made it to 8 cycles when I had the bowel perforation that resulted in the colostomy).  So even at that time in 2018 we were already going "off the beaten path" so to speak.

Why do a Clinical Trial (study) versus Chemo?

When I was diagnosed with recurrence earlier this year, my oncologist explained that the treatment options included traditional chemo (different agents than what we used before) or a clinical trial.  

In order to understand why I chose to do a clinical trial it is important to understand the following:

• To be eligible for a clinical trial you must meet certain criteria and many times there are limits to the number of different therapies you have had in the past.  So if I try a second line of traditional chemo for this recurrence, I may not be eligible for certain clinical trials.  
• Enrollment in a specific clinical trial may close once they enroll the specific number of patients they need.  Therefore, you can't necessarily bank on a clinical trial being open in the future.
• Traditional chemo will always be there as a treatment option.  Depending on how things go, if clinical trials don't work for me I may still be able to do traditional chemo at a later point.
• As a research pharmacist that cares for cancer patients every day I know the value that clinical trials provide.  Participation in a clinical trial is contributing to science and the discoveries of future treatment options 

  

  #TRUTH
  

Because of the considerations above, I decided to move forward with the clinical trial options.  Update 3 will have info on the most recent developments on which clinical trial we are currently scoping out!!

#OneGoal

#EndCancer

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