In July I had my usual course of 6-month follow-up tests and exams. I’m very happy to report that the MRI of my abdomen and pelvis showed that all disease is stable. There are no new tumors or spread of tumors. What’s more, a couple of my significant blood and urine tests were at their lowest levels ever. My Chromagranin-A result was 4.4, and my 5-HIAA result was 20.4. Both of these markers are used to help monitor the effectiveness of treatment and detect recurrence of tumors. All of this would indicate that the PRRT I started two years ago is still having a profound and positive effect on my tumors. Great news!
Things had been going very well for me the last several months. I’ve felt the best I have in a long time, been working full time, and doing lots of projects around the house (one of my passions). Then last Sunday night everything came to a full stop. Literally.
I suddenly had severe abdominal pain like I haven’t felt in years. I was doubled over in agony. It felt like a bowel obstruction, and unfortunately that’s exactly what it was. My big dinner and dessert, along with whatever else I’d eaten that day, were stuck and distorting my belly in a very painful distended fashion. It’s difficult to describe how uncomfortable this is, but think of the worst stomach ache you’ve ever had, multiply it by an appendicitis, and add ten. After writhing in agony at home for an hour or so Kathy took me to the ER.
Thankfully they got some morphine on board pretty quickly. The funny thing about morphine is that it doesn’t really stop the pain, it just sort of dulls your mind so the pain isn’t such a crisis. They took me in for a CT and confirmed a small bowel obstruction. It turns out that this was likely caused by an adhesion, a remnant or result of my bowel resection to remove my primary tumor 3-1/2 years ago. These adhesions are not uncommon following bowel surgery.
The next thing they did was the miserable part of the story: they inserted an NG tube. Whatever else you do in life, avoid an NG tube at all cost. It’s the single most unpleasant device in health care. Basically it’s a length of plastic aquarium tubing they stick up your nose, thread down your esophagus, and into your stomach. They then attach suction to the end that’s still hanging out your nose. The contents of your belly get sucked out through your nose and deposited in a jar hanging on the wall. Lovely. You feel like gagging the whole time this thing is in, and your throat gets very sore.
Now the problem here arises when you’ve had corn with your dinner. As we all know, corn kernels just look like corn kernels from beginning to end. And since you can’t suck corn kernels up a length of aquarium tubing, my jar on the wall was not filling up. By 4:00am or so they admitted me to a hospital room, and Kathy finally went home exhausted, but my jar was still mostly empty and my belly was still a mess. Your body actually knows that it only has two options for food travel: down or up. After several hours of trying to push the food down, my body started pushing all that food back up. Now all that corn, along with everything else, was coming up the esophagus alongside the tube. If you think “normal” vomiting is miserable, this is the worst. The good news was that with the corn eventually out of the way, my jar was filling like a champ and my belly started to slowly soften.
On Monday the bowel surgeon was thankfully in no hurry to cut, and wanted to give this situation a day or so to resolve. Of course I wasn’t allowed to eat or drink anything during this time, and by Tuesday things had calmed down quite a bit. Around lunchtime on Tuesday they pumped a few cups of barium into my stomach (no need to drink the stuff when you have an aquarium tube handy) and did several x-rays every 20 minutes or so. The barium safely traveled all the way to my colon, so that was a pretty good sign that the obstruction had resolved itself. Great news! No surgery necessary. A couple hours later they yanked out the tube and started me on a liquid diet. By Wednesday afternoon I was back home resting comfortably.
For now the story is that I need to really drink lots of water, eat several smaller meals each day and be sure to get plenty of fiber. Hopefully this was just a fluke and not something that will recur regularly or often. I will do everything I can to avoid it, and you can be sure that I will always carefully chew my corn.
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!
We were very fortunate to be part of an amazing and powerful Relay for Life the weekend before last here in Gilroy. It’s funny how things come full circle in life. Years ago Kathy got involved as a volunteer coordinator for the annual event when it was still fairly new in town. She pulled me and the rest of the family in to help out, and we loved it. Fast forward to this year when I was honored to speak at opening ceremonies as a survivor, and Kathy did an incredible job speaking at the luminary ceremony as a caregiver.
We had a wonderful team, “BUCK Carcinoid”, that was spearheaded by Stephanie with lots of help from Stacy. I was completely overwhelmed by the support from friends and family, several dozen people all wearing our black team shirts emblazoned with zebras. My parents were here. I was totally surprised by my best friend Derek, wife Leanne and daughter Faith when they showed up (seen holding our hands in photo). They actually slept in our house the night before and I didn’t know it. Well played. There were too many other people there to mention, but every single person truly touched me and Kathy.
Our emotions were fried through tears of sorrow and joy. We walked, played, reminisced and just had a great day. By Sunday morning when closing ceremonies rolled around I was spent. Several of us survivors stood up at the stage and watched lots of young people cheer for us, then come forward with signs saying things like, “It’s okay to be sad”, “Keep fighting”, “Stay strong”, and the one that made me really start bawling, a 5-year-old holding a sign that read “We’ve got this”. Ugh!
Well over $100,000 was raised for the American Cancer Society. Thank you to everyone who helped make this event so special.
As for my health, I’m doing well, feeling good, and really working hard. I’m in a holding pattern just waiting to see what the next round of scans and labs reveal. Kathy and I will be off to LA in late August to visit my doc at Cedars-Sinai and I’ll be sure to post the results after that.
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.
Kathy and I just returned home from a quick 2-day trip to Southern California. I had some scans and tests at Cedars-Sinai yesterday and today, then we met with my oncologist, Dr. Wolin, late this morning. The purpose of the trip was to follow-up after completion of PRRT in Houston. The great news is that Dr. Wolin said he was very pleased with the results! The imaging showed that many of the tumors in my liver and lymph nodes have shrunk. Other tumors have remained stable, and there are no signs of new tumor development. These are very good results and prove that the PRRT was effective.
I’m so happy that this journey we first decided to undertake last May has paid dividends. It feels great to be at a stable place with my health for the time being. I’m slowing regaining my strength and energy and feel much better than I did just a few weeks ago. I return to Houston in early May for a quick follow-up visit, then back to see Dr. Wolin again in late May. The hope is that continued monitoring will indicate things are status quo for some time to come. I’ll keep having my monthly injections to help with symptom control, though a little more good news is that the dosage will be reduced so I only need one giant, uncomfortable injection monthly instead of two.
Thanks for checking in and following along. I’ll post more as there’s news to report. Take care.