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Visit with My Oncologist

I just met with my oncologist today. This was a regularly scheduled follow-up to my first two PRRT treatments. I’ll come back and see him again when all four treatments are complete, probably in late February. He is pleased with how things are progressing, and confident that I’ll see substantial benefit from this therapy, particularly after all four doses are administered.

It’s been two weeks since my trip to Houston, and I’m still feeling wrung out, sick to my stomach, and having to make way too many trips to the bathroom. If this is anything like the first round I should start feeling quite a bit better in another week or so. I was hoping that this time would be easier on me, but no such luck. My doctor today said that I can take more “rescue injections” of octreotide at home to help ease some of the symptoms.

I’m back at the office on a regular basis, working as many hours as I can tolerate. At home Kathy is a saint – putting up with my issues while dealing with her own (including a sprained ankle right now). I’m looking forward to feeling significantly better by Thanksgiving so I can enjoy our big family celebration.

I’ll post again soon. Thanks for stopping by.

Doctor’s Report

Well I’m glad it’s Friday and that I had my fourth and final nuclear scan this morning, so there’s nothing more for me to do before flying back home tomorrow. I really miss my family. After this morning’s scan I drove to another office and met with the doctor to review my results.

The news is essentially this: stable disease. That’s good news because it means that there are no new tumors and nothing is growing or spreading. Not to get too technical, but the MRI report states, “Stable to slightly decreased size of bilobar hepatic lesions.” Again good news which means that my largest tumors in my liver have actually decreased in size ever so slightly. The largest of those tumors measured 4.7 x 4.3 cm before my first therapy in August, and it’s down to 4.5 x 4.2 cm as measured Tuesday, just prior to my second therapy. That’s only a modest gain but progress nonetheless. I’m very pleased that the therapy is working and really looking forward to more dramatic results after the second, third and fourth rounds.

In general I’m feeling somewhat better this time than I felt after the first round. I’m still pretty tired though. Plenty of time to rest this afternoon, then looking forward to heading home tomorrow.

Just Hanging Out in Houston

The PRRT infusion went according to plan yesterday. It made me feel sick and tired, but a little less so than the first time. The worst part is the amino acid IV. For whatever reason it really aggravates my hands and arms where the IV is and they ache horribly the whole time. Today is a little better.

I had a follow-up scan this morning, and will have another tomorrow morning. During that visit tomorrow the doctor will meet with me to discuss the results of all of these scans. I’m really looking forward to getting some definitive information about the effectiveness of this therapy.

For now I’m just hanging out at the hotel, trying to get some rest. I talked with two of the other PRRT patients this morning at the clinic. We’re all staying at the same hotel. It’s great to see and hear how others are doing, and to feed off each other’s enthusiasm about this process. I’ll post more tomorrow after meeting with the doctor.

Round Two

I’m back in Houston for my second round of PRRT. I flew in this afternoon and had an MRI. I’ll get the results of the MRI in the next day or two which may give me an early indication of how effective this therapy is after only the first of four treatments. The tech was nice enough to leave my IV in from the MRI so hopefully I’ll have one less needle-stick in the morning.

Tomorrow is the actual infusion of the radioactive therapy along with the amino acids to protect my kidneys. It’s the exact same process as last time, with follow-up scans on Thursday and Friday, then flying back home Saturday. Because this is a much shorter trip Kathy stayed home to help save some money. I’ll be in the treatment room all day tomorrow with one of the other patients I met on my first trip. We ran into each other at the hotel, and will have lots to talk about as we sit there for five hours.

Thankfully Houston is a little cooler (still about 90) and a lot less humid than it was in August. My interesting travel story is that the TSA opened my suitcase to inspect it, I guess in San Jose, then LOCKED it shut with the built-in lock. I haven’t ever carried that key, so I had to get a locksmith to open my suitcase for me here in Houston. I’ll be sure to find the key and keep it with me from now on.

I’ll post more after my therapy. Take care.

RIP Steve

I fell in love with Steve Jobs in high school. Well, not Steve per se, but Apple Computer. That was when I first got my hands on an Apple II in math lab. I carried 5-1/4 inch floppy disks in my PeeChee folder like they were gold. Over the years, and after owning so many Apple products I’ve lost count, my affection for Steve and all things Mac has only grown. I’m proud that the bottom of every page on this website says “Made on a Mac”.

So when I found out a few years ago that Steve Jobs was suffering from the same rare nasty form of cancer that I have I was devastated. It’s widely misreported in the media that he had pancreatic cancer. I can understand that since everyone is accustomed to hearing those words and knows how serious that diagnosis is, so it’s easier for the public to digest. In fact he had neuroendocrine tumors (NETs), with his primary tumor in his pancreas. Because his cancer started in his pancreas it wasn’t called carcinoid, like mine which started in my small intestine, but it’s the same cancer – just a different organ. Like most NETs his metastasized to his liver, and the rest of his story has been fairly well reported. I actually applauded during a report on CNN last night when a doctor correctly said the words “neuroendocrine tumors”.

Many of us in the NETs community are conflicted about Steve. I know that my fantasy was for him to hold one of his iconic press conferences and announce, “I have NETs and I’m investing a billion dollars of my own money to find a cure!” At the very least we hoped that he would open up and share the details of his own battle, becoming a flag bearer for our cause. Yet I can well understand why he didn’t want to be that guy. I know how difficult it was for me just to start this website and “go public” with my own story. I empathized with his plight.

It’s really hard for me when someone I know succumbs to carcinoid. When someone larger than life loses his battle it’s no less traumatic. Rest in peace Steve, you will be missed.