This trip could have been an email

So as the joke goes, this meeting could have been an email. That was my experience going to Houston last week. After figuring out the logistics of our flight, hotel, car rental, work schedule, we arrived to Houston with high expectations and were sorely disappointed. At first I tried to ignore the worn out aesthetics of the hospital, I kept repeating to myself that what’s important is the talent the building holds but it was obvious that the influx of people greatly reduce the quality of certain things.

Appointments ran late, basic tools were not functioning at their best (ie vital taking machines had issues, basic blankets very worn out). Overall the feeling of the place did not feel as if this is the leading edge of treatment centers.

Either way, we met with MED oncologist who didn’t provide much new insight other than referring me to Hepatologist to see why my liver # won’t come down. Their Hepatologist believes that it could either be the immune-therapy from a few months ago or the current Oxaliplatin that is part of my chemo regiment. Of course I wasn’t staying longer than 5 days so that would have to be assessed back at home.

After that appt we patiently waited to see if scheduling could squeeze us to see a well regarded surgeon oncologist in the country. At first they told us it would be telehealth appt in two weeks, but luckily a patient cancelled last min, and we got that spot to meet him in person. There was much excitement as I was ready with my list of million questions and thoughts on what Mayo Jacksonville had offer.

Mayo is currently offering me a path where I can do LAP HIPEC first to peek and treat, then 3 weeks later TG/HIPEC.

But in that meeting I come to learn that for stage 4 patients its seems like they are no longer doing TG/HIPEC treatment (last time they did one was two years ago). And that his current clinical trail he is running, I am excluded due to the one lymph node in the retroperitoneal area. There is nothing else he could provide me. So with that all I can strongly say…

It’s was deeply disappointing to experience one of the top hospitals in the country not have the technical logistics manage virtual appts for something as simple as a consult. It deeply saddens me for those who do not have the monetary means, nor the health stamina, to do such a trip as I am currently luckily to have.

One of the best highlights though was meeting a sister of Stomach Cancer Advocacy group on Facebook. She is AYA who just went thru the IP trial at MDA and had a TG (stage 4) as well and so far doing fantastic! Was so inspiring to meet her and have someone I can relate with on so many levels. She will forever be friend in this.

Sidenote: during this trip I ended up in their ER dept with High Blood Pressure and horrible headache, they assessed me, did a Brain CT just incase and discharged me after 7hrs with RX of Losartan to control my blood pressure (just another side effect of my constant prednisone intake due to liver inflammation)

As for my current treatment, I am currently undergoing the 10th round of Flofox. After consultation with my oncologist, we have made the decision to permanently discontinue one of the two chemo drugs, Oxaliplatin. Consequently, I will now only receive 5FU (via a home pump) and leucovorin (which is not a chemotherapy drug but an assistant). This modified regimen is now classified as a MAINTENANCE regime, intended to provide relief to my liver. Although I had hoped to reintroduce Oxaliplatin, my oncologist has informed me that once it is discontinued, it cannot be resumed. The positive aspect is that she concurs that we have achieved the maximum possible effectiveness of it. Another benefit is that I can now put a hold having to do doing any liver biopsy.

I am now four months into this regimen.

But onwards! I am now pivoting back to Mayo Clinic in Jacksonville and moving forward with their LAP HIPEC, hope to have a date set soon.

Onwards to more aggressive out of the box treatments.

Onto the photos of this mini adventure.