It’s been a while since we’ve had an update. I thought I would take advantage of feeling decent enough to write one and do just that. I am going to split this into two posts. This one will focus on the medical situation. A second post will focus on the emotional/spiritual outlook.
A Quick Recap
As I think we’ve shared, the original plan post diagnosis was to consult with a colon & rectal surgeon for a probable hemicolectomy (bowel resection) to remove the primary tumor, as well as a consult with the hepatobiliary surgeon (liver) to determine surgical options for the metastatic tumors on my liver.
To our surprise, the hemicolectomy became an urgent need after a partial bowel obstruction developed at the primary tumor site. That surgery took place in the final days of May.
We then met with the hepatobiliary surgeon who wanted me to receive six injection therapy shots of a somatostatin analogue (hormone) called Lanreotide spaced twenty-eight days apart before having surgery to debulk (remove) and ablate (burn) the tumors in my liver. The tumor board agreed with the plan and it was set in motion. The goal was to have surgery by the end of the calendar year. We followed up with a neuroendocrine tumor specialist who also concurred with the treatment plan.
A Plot Twist…
My oncologist went through the treatment plan the day of my first injection therapy. He was very clear that somatostatin analogues (SSA’s) are very different from chemotherapy. They typically do not shrink or destroy neuroendocrine tumors, but are very effective at stopping their growth. Few patients have side effects, and even fewer have moderate to severe side effects. It turns out that I am in the “even fewer” category.
Side effects from my first two injections were severe enough that I had a few unplanned visits to the emergency department to mange them. My oncologist then switched me to an alternate SSA called Octreotide in hopes that I may have fewer side effects, but was clear that more people experience side effects from Octreotide than from the Lanreotide I was originally receiving. Unfortunately, there was no significant improvement in my experience from the switch.
During my August visit, we made the decision that a lack of significant improvement in my side effects would be good enough reason to alter the treatment plan and move forward with the liver surgery sooner than planned. The “official” decision to do so was made a week after I received my Octreotide injection. My oncologist contacted the hepatobiliary surgeon and a series of events was set into motion to prepare for the surgery. This includes:
-MRCP (detailed MRI) of the liver on Sept. 14th completed
-Medical team receives MRCP results hopefully today
-Tumor Board convenes on Sept. 23rd and reviews the changes to my treatment plan & MRCP to recommend whether or not we proceed with surgery
-Meet with hepatobiliary surgeon following tumor board to finalize surgery date and other details
Another plot twist…
We had an additional scare these past few days that we think is the result of a drug interaction from the many drugs I take to manage the SSA therapy side effects. The best way I can describe what happened is by saying I had a shortness of breath very similar to the times I’ve travelled to high altitudes. I told my oncology nurse that I felt like I was standing on Pike’s Peak minus the breathtaking view.
A chest CT on Monday ruled out concerns of a pulmonary embolism, pneumonia, etc… We are removing one of my drugs in hopes that it sorts out the problem. So far it seems to be working.
Conclusion
I’m not sure “conclusion” is the most appropriate word to use. This is the conclusion of this update, but I think it would best to say “To be continued…”