Patient perspectives: Lindsey Miller

Rebecca Aris interviews pancreatic neuroendocrine cancer patient Lindsey Miller on what it’s like to live with the disease at such a young age.

Lindsey Miller is only 27 and suffers from pancreatic neuroendocrine cancer. Pancreatic neuroendocrine tumors are very rare and relatively slow growing, but for Lindsey, who was diagnosed just after her 25th birthday, the tumor had spread from her pancreas to both lobes of her liver by the time she was diagnosed.

Whilst there is no cure for Lindsey’s disorder there are many treatment options such as surgery and radiation treatment.

‘With cancer’, Lindsey explains, ‘there are generally only two categories of living patients: those in treatment (patients) and those who have finished treatment (survivors).’ As Lindsey doesn’t fit into either category she has made up a new one – ‘i am a liver’, which is the title of her blog.

Lindsey famously invited celebrity Joseph Gordon-Levitt out on a date by posting a video on her blog, a move which gained over 400,000 views on YouTube and an abundance of media attention.

Here she speaks with pharmaphorum on her experience as a patient and the areas of unmet need for patients with neuroendocrine cancer.

Interview summary

RA: Lindsey thanks very much for joining me today. Can you start by giving me a bit of a background and explain how you came to be a vocal e-patient?

LM: I started out with my blog about a year after I was diagnosed as a way to tell people who didn’t already know that I had cancer. Because I didn’t have typical chemo during my first year of having cancer, nobody knew that I had cancer unless I told them.

It was also therapeutic, because I hadn’t written much about my cancer. It was therapeutic to write it all down and then get feedback from people. A few months after I started my blog my friend thought it would be fun to make a video to ask Joseph Gordon-Levitt on a date after the movie 50/50 came out. I made that video and posted it to my blog, I thought my friends would see it and think it was funny. But it became viral and ended up all over the internet, and people who I haven’t seen in 10 years were contacting me. I heard from a lot of newspapers, and it was at that time that I became a more known and recognised e-patient and I could do something with my platform.

RA: Can you tell me more about your blog, i am a liver, and the kind of things you blog about?

LM: The idea of i am a liver is that I didn’t feel comfortable with the words that are generally used to describe cancer patients. I have a cancer that is considered chronic. Most patients are either survivors, which to me means you survived having cancer, or they’re patients and I didn’t want to be a patient forever, because that just sounds exhausting. Most of the cancer that I still have is in my liver so I decided to call myself a liver.

At the beginning I posted a lot about the juxtaposition between living a normal life and also having cancer, so the disconnect that often occurred when I spoke to my friends. I felt and still feel a little bit out of sync from everyone else who is my age.

So a lot of my posts are about specifically being a young adult and being diagnosed with a life-changing illness.

Now that I have transitioned into a period where I’m not feeling quite as well I blog a lot about topics that more cancer blogs deal with, like fatigue.

“I didn’t want to be a patient forever, because that just sounds exhausting. “

 

RA: Would you say there’s been any information sources or groups that you found useful and supportive?

LM: The non-profit organisations that exist for either pancreatic cancer or carcinoid neuroendocrine cancer. Also some young adult cancer organisations have all given me a lot of information at certain points in my diagnosis. The Hirshberg Foundation for Pancreatic Cancer Research has been very helpful, and they have conferences that I’ve been to. The Caring for Carcinoid Cancer Foundation, also has conferences that I have been to.

I don’t do a lot of web research anymore, but I like to go to the patient conferences and hear what other doctors have to say besides my own.

RA: What would you like to see made available in terms of support or information?

LM: There’s probably not really a way to get around this but there is a lot of information out there that’s wrong about cancer, or a lot of misinformation about alternative cures.

The American Cancer Society tries to dispel myths. It’s nice to see information on trusted company websites rather than reading journals articles because those aren’t really readily available to the public and they’re hard to read.

“It’s nice to see information on trusted company websites…”

 

RA: How has social media helped you as a patient?

LM: Getting to know other people who have the same disease as me has been useful. The cancer I have is fairly rare, but through my blog I have heard from 20 to 30 people who have what I have. I have also connected with other people who live near me with the same disease. It sometimes helps to talk to other patients who have what you have, especially if it’s rare, to compare notes.

The treatment that I’m currently receiving in Germany, peptide receptor radionuclide therapy (PRRT), is not something that they offer in the United States. You have to be plugged in to the patient network in order to get the full story about what you’re getting into when you go abroad for medical treatment. Other patients who had been were a big help in making me feel better about my first couple of trips, and now that I’ve been a couple of times I know the ropes so I can help other people.

RA: What was your impression of the pharmaceutical industry before your illness and has your perception changed at all?

LM: I definitely respect the pharmaceutical industry more, because I have personally benefitted greatly from some of the drugs that are available. I was on a course of oral chemotherapy for a little over a year, and it shrunk everything, and I was able to attend grad school and basically live a normal life, which was wonderful. It’s so exciting that drugs like that are out there. Also I made a friend through one of my support groups who works for the pharmaceutical industry and she tells me a lot about the education that pharmaceutical companies do about their drugs with doctor’s offices, and that’s an aspect of industry I didn’t know about before. So there’s a lot more respect.

RA: One last question, what would your key message be to the industry, how can it better meet patient needs?

LM: Well I don’t think this is something the industry can necessarily control, and this isn’t as much of a problem in Europe as it is in North America, but some of the drugs that I’m on are astronomically expensive. I know that it costs a lot to develop drugs and I understand why the costs are high. I’m lucky that I have good insurance, and am able to afford the drugs, but some people aren’t as fortunate as I am and they should be available to everyone who needs them.

RA: Thank you for your time.

 

 

About the interviewee:

Lindsey Miller lives in San Diego, CA. She has just graduated from grad school and has a masters in urban planning.

She is a pancreatic neuroendocrine cancer patient and blogs at i am a liver.

How can pharma better meet the needs of patients with rare cancers?