The Road to PRRT: A Path of Self-Discovery and Growth

By Josie Rubio, NET Blogger, A Pain in the Neck

Sitting on a yoga mat in a Brooklyn park, looking across at the Manhattan skyline, I recently found myself taking stock of how much had changed in just a month and a half. In mid-May, I’d just been released from the hospital for the fourth time this year, after a blood infection. Since severe NET-induced diarrhea had persisted since January, I had been doing daily IV hydration at home almost four hours a day. It was hard to imagine then a life in which my guts weren’t constantly roiling or when I didn’t have to wear diapers to bed.

An Unlucky History of Cancer

I’ve had two separate, unrelated cancers within the past five years: first, refractory Hodgkin’s lymphoma and then neuroendocrine tumors. Occasionally I buy a lottery ticket to see if my luck goes the other way. I’m always genuinely surprised when I don’t win.

I had previously had a Whipple procedure for my NET tumors in early 2016, followed by a liver ablation. Almost exactly a year ago, I received the news that the ablation was successful and the cancer was unlikely to come back. The next day, my oncologist delivered the news that they had missed seeing a new tumor in my pancreas. I would always have this cancer, which would be treated more like a chronic disease.

My tumors are pretty aggressive. Despite relatively good health up through December, I had severe diarrhea and could barely keep food down by New Year’s. My potassium dropped so low that I was rushed to the hospital. I spent most of January at Memorial Sloan-Kettering Cancer Center. I received radiation for the second time; the first was in 2014 for the lymphoma, during a month-long stay at Sloan-Kettering that also included an autologous stem cell transplant.

The radiation helped a little bit. I received several additional radiation tattoos—small dots to help line me up in the machine—so I now have a grand total of 15—14 radiation dots and one small Libra symbol I got when I was 20. “You’re like Tommy Lee now,” a friend noted about my rock star number of tattoos. However, I stopped improving a few weeks after the radiation, and I still was significantly sick with diarrhea.

When dacarbazine chemotherapy didn’t help and I ended up in the hospital for a blood infection in March, I had an embolization for a liver tumor. That also didn’t help curb the diarrhea caused by the VIPoma tumors. Finally, a few rounds of carboplatin and etoposide helped slow the diarrhea a little bit but I was so sick immediately following the chemo, I ended up in the hospital again because of a second blood infection.

Getting PRRT is good news

At every appointment with my oncologist, I would ask about the peptide receptor radionuclide therapy (PRRT) treatment called Lutathera®, which had been approved by the FDA in January. 

In June, I was the first patient who wasn’t part of a clinical trial at Memorial Sloan-Kettering Cancer Center to receive PRRT to treat the neuroendocrine tumors in my pancreas.
It wasn’t available immediately as hospitals sorted out the logistics, from health insurance to training for administering the treatment. At an appointment in May I asked and received the familiar answer, so I was pleasantly surprised the following day when I got a call scheduling a meeting with the doctor who would administer the PRRT.

In June, I was the first patient who wasn’t part of a clinical trial at Memorial Sloan-Kettering Cancer Center to receive PRRT to treat the neuroendocrine tumors in my pancreas.

Though PRRT is new in the U.S., there’s quite a bit of data on it since it’s been available elsewhere, particularly in Europe, for so long. My VIP-producing tumor, however, is very rare, so there’s less information. However, when it works, it shrinks the tumors and keeps them at bay enough to relieve the symptoms. From what I have learned, a person may experience relief for an average of three years, though I fear I will be the exception. According to the tests that measure Ki-67 markers, my tumors are very aggressive. What would I have? …The guess is something closer to six months.

The doctor explained how the targeted radionuclide therapy works: essentially like a Trojan horse. My bloodstream wheels the Lutathera Trojan horse to the NET tumor’s receptors—the enemy gates, which accept the gift of the octreotide, a synthetic hormone I also inject subcutaneously several times a day. A chelator, however, has bonded a radionucleotide to the octreotide, so once the bind has occurred, the radioactive atom emerges and destroys the unsuspecting tumor cells.

The doctor warned that, like chemotherapy, the diarrhea could become significantly worse as the cells were destroyed, temporarily increasing the release of VIPoma into my bloodstream. In addition to the Lutathera, I would also be given anti-nausea medication and a corticosteroid to combat other possible side effects, as well as four hours of intravenous amino acids to protect my kidneys from the radioactivity.

“I’m absolutely glowing”

…Oh, I would also be radioactive. I’d received radiation and had various scans over the years that made me radioactive, with the cards to carry around in case I was stopped or scanned at an airport or checkpoint and tested positive for radioactivity. But this seemed like it would be on a whole new level, the kind that might make me glow in the dark.

I would have to avoid babies and pregnant women for about 10 days instead of just one, but I would also have to keep people at an arm’s length for at least a day. My sheets and clothing that I wore for the first five days post-treatment would have to be washed separately. I was told repeatedly not to pee in the shower, something I don’t do anyway; however, I’d have to be careful about my bathroom habits since most of the radioactivity would be flushed out in urine.

That night, a mosquito found its way into the guest bedroom and buzzed around my face. “Serious question: If a mosquito bites me while I am radioactive, will it die or turn into a superhero mutant?”
I arrived at the nuclear medicine department on the appointed morning exhausted. The doctors and nurses looked at my PICC line and started a peripheral IV as well and asked me questions as they explained the long- and short-term side effects.

It’s strange to be a toxic creature. There were so many precautions. People wore little booties over their shoes. They woke me up long enough to bring me to a scan, which showed good uptake of the Lutathera in the pancreas. I celebrated by resuming my nap until about 5 pm, when I was cleared to go.

A friend picked me up after treatment and took me to her apartment with an extra bedroom made up for me. “Should I put you on a blanket?” my friend asked. She put down a sheet on one end of the couch and watched TV with me from the other end of the room. We ordered takeout using the Seamless gift card former coworkers chipped in to buy me, and I used plastic silverware and my own cup.

That night, a mosquito found its way into the guest bedroom and buzzed around my face. “Serious question: If a mosquito bites me while I am radioactive, will it die or turn into a superhero mutant? Should I phone the on-call oncologist?” I asked on social media.

Friends kept asking if I would develop superpowers.

I worked remotely for a few days and stayed in my semi-isolation. I was feeling sorry for myself and crying radioactive tears when I realized my diarrhea hadn’t worsened. In fact, I had solid stools again. I took my Zofran® and didn’t experience nausea and ate all of the best types of the small chocolate bars from the mix my friends had out.

Alone with my cancer?

Going to a friend’s house following PRRT was new to me. When they asked if I had somebody at home, I started to cry—full-body-wracking sobs. I couldn’t sleep next to someone for five days after treatment. That wouldn’t be a problem. My boyfriend of 12 years and I had just parted ways. He says we were headed that way anyway. After I overheard a conversation in which he talked about how much he enjoyed reconnecting with a recently divorced friend during a business trip, and how nice it was to walk around London by himself not thinking about cancer, I knew a break up was the right thing to do, even if I felt like he was doing it for the wrong reasons. He said he’d been with me since I’d become really ill in January only out of a sense of obligation. He said he was tired of dealing with cancer for five years and deserved a vacation to Europe that he’d booked without me.

He was tired of dealing with cancer. I thought I’d dealt with it pretty well, considering, but he made me feel really bad, like I’d been a burden destroying his life. During those months I was so sick, I had actually hoped for a quick death, in part because I felt so bad for him. I had wanted him to move on, but I’d expected to be dead first.

I felt like I’d deeply disappointed everyone. Teams of doctors at a top cancer center have been helping me fight for my life for more than five years, and I was unraveling. I felt alone and abandoned despite so much support from family and friends.

Though I was staying with my friends, I had to return to my own place several times for things I’d forgotten like syringes and, inexplicably, shirts. (I made sure my ex wasn’t there, because I didn’t want to see him: he needed to stay at our apartment that week so he could pack for his upcoming move.) At one point, I found myself in the bathroom staring at his toothbrush, contemplating the satisfaction I would have at placing it in my radioactive mouth. (I didn’t, of course.)

Finding the will to fight

The break up happened in late May; I was a little in shock. I hadn’t been eating well or sleeping much for weeks. When the doctor asked me about my medications, I admitted I hadn’t been taking them as regularly as I was supposed to. I felt like I’d deeply disappointed everyone. Teams of doctors at a top cancer center have been helping me fight for my life for more than five years, and I was unraveling. I felt alone and abandoned despite so much support from family and friends. It’s so easy to focus on what you don’t have.

What I did have that morning was a team of doctors and nurses, as well as a radiation specialist, prepping me for PRRT. I was introduced to two other doctors who would be observing, one of whom was from the PRRT Treatment Center in Rotterdam, early pioneers in PRRT. I couldn’t fully bask in my minor celebrity status because I kept falling asleep. In addition to my PICC line, they also put in a peripheral IV. The PRRT mechanism itself looked like a metal contraption that should be in an office supply catalog for mailroom. I actually don’t remember much as I kept falling asleep. I don’t think this is typical; it was weeks of physical, mental, and emotional exhaustion catching up with me.

Enjoying a bit of freedom

I had a Mediport® placed earlier this year, then removed because of a blood infection. The Mediport was placed again after treatment and my PICC line was removed. For the first time since January, I don’t have to do daily hydration. I can shower without using an arm shower cap or AquaGuards®.

It’s little things like that that make me like Alec Baldwin’s “enthusiastic Parker” character on Friends. Quiet bowels, diaperless nights, unencumbered showers are all cause for celebration.

About two and a half weeks after the PRRT, I felt a familiar ache in my scalp, a very specific feeling of hair follicles letting go of hair. I’d hoped it was because I’d been wearing a garden sun hat, but by Monday, tiny pieces of my super-short hair were on my pillow and my laptop and my work desk. I had been warned of mild alopecia, and my hair had already thinned from the previous chemo. Being a swarthy lady is the bane of my existence; about 90 percent of my beauty routine involves hair removal. Of course, my mustache is still fuller and more luxuriant than I’d prefer. I’d wear a wig, but I’m lazy. Yet I’d rather be bald and active—on a yoga mat, on a beach—than have a full head of hair and be attached to an IV pole four hours a day.

My bowels don’t feel quite as stable as they did initially but the doctors have reassured me that I’ll continue to improve with further treatment. I am told that some of my symptoms might come back a bit before the next treatment.

Finding joy & support

The other day I found myself crying when I saw how scans after PRRT can significantly reduce the tumors. They were tears of gratitude. I really thought I was dying earlier this year, and I’m grateful that this might buy me some more quality time with family and friends. It’s probably not a very long time, but I’ll take it. My break up hurt, but we can both move forward now with our lives and nobody needs to die first.

As for the rest of my emotional health, I still have some sad days, but I’m feeling better every day. In fact, I’m often happier than I have been in a long time. So many friends have rallied and given me so much support, I’m far from alone and surrounded by so much love. No matter how our opinions on the break up differ, here is a fact: We had six or seven containers of dental floss in the bathroom and he took all of them. I don’t want that kind of person around. From now on, I want only the kind of toxicity in my life that combats tumors, not the kind that makes me feel apologetic for having cancer. I might actually have to admit to myself that I won’t win the lottery, but many days, I still feel extremely lucky.

Editor’s Note: PRRT is not for everyone. Josie’s story is not intended to represent typical indications or protocols for PRRT. To find out more about PRRT, talk to your treatment team.

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Bari

I’m so happy for you. My husband was part of the PRRT clinical trial at MSKCC in 2016. Unfortunately it didn’t help him. ( He had carcinoid.) I’m glad it’s helping you and others and I really hope it can wipe out all NET cancers.

Ozzie

Thanks God you are feeling better and you are full of love. ViPoma is rare and lottery is rare to win too keep on.

Kerry

I’m both laughing and crying as I read your post. I’m glad PRRT is helping. I finished my 4th PRRT treatment in March of this year. So far it appears to be keeping things under control.

I wish you the best, and more happy than sad days.

And, he took all of the dental floss??? What a Jerk! You definitely deserve better!

Betty

If you do glow really well and they tell you PRRT is perfect for you, How long does it last for you?? can anyone tell me how long they have survived after taking this PRRT treatment?

Ellen

What an amazing story! I too have suffered two cancers in 5 years. The first was Breast Cancer, which I kicked to the curb. Started getting sick again five years out, but it took four more years to discover it was NETS. Lots of Carcinoid syndrome so my heart goes out to you. I just finished 4 rounds of PRRT in Seattle. After third treatment, scan showed no new growth or lesions. Hoping next scan will show shrinkage and dead tumors too. Hopeful! Keep fighting girl! There are good partners out there.

Tony

Heart rending but great story. As a PRRT survivor too. I take my hat off to you

Dave

Great story and words. They all fit together. I was diagnosed in July 2008, two debulking surgeries and have been fighting for PRRT for almost three years. Starting the process at SCCA and this Thursday will be my first treatment. Second one to get it there. So excited. Great news for you.

Lori

Josie – Thank you so much for sharing and for your openness about both the physical and emotional impact of this disease. I LOVE your sense of humor! I am a fellow NET patient, you should never feel like you have to apologize for having cancer. Glad you are able to focus on the positive people in your life that support you. Much love and strength to you.

The Road to PRRT: A Path of Self-Discovery and Growth