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Great Expectations

Seven years ago when I was first diagnosed with carcinoid by an endocrinologist I was scared and didn’t know what to expect. The ensuing weeks of scans, biopsies, lab work and visits with an oncologist left me even more frightened, and saw my expectations run the gamut from “maybe this thing can be surgically removed and I’ll be cured” to “this thing is incurable and I’ll be lucky to survive five years.”

This past week Kathy and I spent two days in LA at Cedars-Sinai where I had follow-up imaging and lab work. It’s been about six months since my last round of PRRT in Houston. I was expecting results that just showed my disease is stable with no new growth. Instead Dr. Wolin and the radiologist were ecstatic to discover from the MRI that all of my tumors were still shrinking. That’s right: six months later and the PRRT is still shrinking all of the tumors in my liver, lung, diaphragm and lymph nodes. This is the best news we could have hoped for!

Now I expect to still be around for awhile, and keep up the fight against carcinoid!

More Good News from Houston

Kathy and I are hanging out at Houston Hobby airport waiting for our flight home. We’ve been here since Monday for a routine visit three months after my final round of PRRT. I had several follow-up tests and exams at Excel Diagnostics including a MUGA scan, renogram, bone scan, MRI, CT, and octreoscans. I also had the gamut of lab work last week. All of the results are good. The imaging shows continued tumor death in my liver and other areas. Some areas of tumors in my lymph nodes and diaphragm are stable. There is no evidence of disease in my bones. My kidney function is normal, and there is no sign of toxicity in my kidneys from the PRRT.

A couple of the most dramatic findings are that the overall tumor bulk in my liver is down to about 25%. A few years ago as much as 40% of my liver was involved with cancerous lesions. The doctor showed us the MRI of my liver and the difference from then to now is amazing. Also great is the fact that my neuroendocrine tumor markers are all the lowest they’ve ever been. These include cga, neurokinin a, serotonin and 5HIAA. That last indicator is the one that surprised us the most because it’s what helped to diagnose me with carcinoid back in 2005. At that time my 5-HIAA level was 87. The highest that indicator has been in the last six months was 55. My test last week showed it at only 15.

The hope now is that this therapy will continue to work over the next several months to further reduce tumors, and that I can enjoy up to five years (or maybe more?) of tumor free progression. I will continue to have follow-up scans and tests on a regular basis. We still have to work out the details but I should be able to have the majority of that work done at Cedars-Sinai in LA rather that having to return to Houston.

We’re so thankful AGAIN to our wonderful friends Mary and Russ who opened their home to us this week. We feel like part of the family and really enjoy our visits with them. While we won’t miss the humidity here, we will miss the people and the great care. I feel so fortunate to have had the opportunity to receive this therapy.

Ready to Head Home

I had my final post-scan today, and we got our hotel room swept with the geiger counter. Everything is a go for us to return home tomorrow. Kathy and I are both anxious to get on that plane and get back to Gilroy.

The therapy on Wednesday went pretty well. I had the expected pain, flushing and overall discomfort with the amino acid drip. The radiation infusion went off without a hitch. It only took three sticks to get two IVs started, which is a great batting average with my arms.

Yesterday I felt better than I did immediately following my first two treatments. Today, not so much. I’m feeling queasy, tired, weak, and dealing with lots of flushing. The supposition is that all of this is brought on by the cancer cells getting fried and thereby releasing more of the hormones and other junk that make me feel lousy. I know I will start to feel better in a couple weeks, but for now this is miserable.

I’m three quarters of the way done with PRRT. There’s no question that all of this is more tolerable knowing that it’s having a positive impact. As I’ve stated before, however, I really look forward to getting that last treatment behind me late next month so I can really begin to recover without getting knocked back down.

I’ll be sure to post again sometime next week when I’m feeling a little better. Take care.

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.

More Scans – Day 2

I think it was actually a little hotter today in Houston than yesterday. Incredible. I suppose you could fry an egg on the sidewalk, except I heard a report that it’s so hot all of the chickens are laying hard boiled eggs.

Today consisted of more scans on the same machine that was in yesterday’s photo. First was a renogram to check for kidney function, then a bone scan. Different blends of the same radioactive isotope were injected for the imaging. The kidney scan is done to make sure that my kidneys are functioning okay since that’s where next week’s radiation therapy will settle aside from my tumors. They need to be confident that my kidneys will be able to handle the influx of radiation and then effectively clear it from my system.

The bone scan was done to look for the possibility of bone metastases. That scan went from head to toe. Afterward it was evaluated, and then they did a follow-up scan on my abdomen to get a better picture of some areas that they wanted to look at a little more closely. Ideally the first scan would have been enough, meaning they didn’t see anything. We’ll find out the results of this scan, and all of the scans from this week when we meet with the doctor on Monday afternoon.

I also had to stop taking my injections yesterday morning since that drug can interfere with some of the imaging. It’s the first time I’ve been off of Sandostatin for years, which helps control my symptoms, and today I’m not feeling so great. Lots of flushing and discomfort, especially after eating. I get to start my injections again tomorrow evening and can stay on them until Monday, when I’ll be off of them again. Hopefully this therapy will be very successful and will help knock down my carcinoid syndrome symptoms.

Through it all, the people at Excel have been great. I’m also very fortunate to have Kathy by my side every step of the way.

Tomorrow afternoon will bring a couple rounds of octreoscans and an MRI. I’ll post more then. Take care.