A woman is in front of shelving for boxes with question marks on them

Linnea Olson Talks About Clinical Trials, Triage, Dating, Sex And Being A Writer (Part 1)

I met Linnea Olson from her blog and Facebook two years ago. Linnea is a lung cancer patient, artist, and writer. I am impressed by Linnea’s experience after 15 years of lung cancer survivorship. I especially have a lot of respect for her heroic behavior in clinical trials (mostly first phase clinical trials). I’m also fascinated by Linnea’s personality and writing styles.

Sitting down and chatting with Linnea Olson

I’m so fortunate to be able to invite Linnea for a Zoom meeting to talk about clinical trials, dating, sex, triage, and being a writer. I also asked several patients to attend the Zoom meeting. After the meeting, I posted the event on my Facebook. I got a lot of response from the patients, who were asking if the session was taped, and they would like to attend the next meeting. So I requested Linnea to answer the following questions I’ve asked during the Zoom meeting.

Staying strong and hopeful is a choice

Christine: I know you have participated in four different clinical trials. Some of them can be quite challenging, with many unpleasant and painful side effects. In your articles, you have frequently said “I want to live” and I believe that you mean it. What motivates you to stay so strong, and how do you stay so hopeful?

Linnea: I am strong and hopeful because I choose to be. This is not to say I don’t get pulled under at times -- I just went through a strong bout of depression between the rigors of life in a pandemic and starting a new clinical trial with difficult side effects and seemingly limited efficacy.

I let myself wallow for longer than usual (almost three months) but then I took some steps to pull myself out. I doubled up on my antidepressant, took a break from treatment, and started a meal service that delivers ingredients that you prepare yourself so that I could avoid shopping but also eat more responsibly. As I live alone, it sometimes takes an enormous amount of willpower to get motivated.

However, I do love life (most of the time) and my adoration for my three children is a powerful reason to stay as well. I am also cognizant that because of my long term survival and participation in clinical trials, my experience is inspirational for some, and I don’t want to let people down.

Navigating clinical trials

Christine: Can you talk about your most recent experience in a clinical trial? What is it like for a patient in a clinical trial from the physical to the emotional journey?

Linnea: I am so grateful for the opportunity to participate in clinical trials but it represents a far greater commitment. And, of course, some risk. I am now in my 4th first in-human phase I trial. This type of trial determines the safety profiles and maximum tolerable doses but not efficacy -- that is for the later phase trials.

I have always entered during the dose escalation phase and almost invariably have had to come down in dose in order to tolerate side effects. My current trial has involved pretty intense mucositis, and between the discomfort as well as the social isolation due to the current pandemic, I have had a really tough time.

I have always said I’d walk through hell if there was something good on the other side but if I have had a positive response to this drug, it is very subtle and that makes it harder yet. Of course, I am at a place with limited options, and that comes into play as well.

Let's talk about treatment costs

Christine: We know that clinical trials save lives, but drug companies leave patients alone to cover most, if not all, of the financial costs. You’re very vocal about this issue, which is amazing. Have you seen any changes happening, or how do you think we can bring about such change?

Linnea: I have seen some changes happening, with some trial sponsors (usually smaller companies) offsetting more expenses for participants. That has not been my experience. After twelve years I am still paying for my parking (low hanging fruit).

Ultimately I would like to see a net zero loss for clinical trial participants, but it will take some convincing. The fact that healthy volunteers in trials are compensated is both salt to the wound and part of my argument that cancer patients should also be compensated.

Read the continuation of Christine's conversation with Linnea in Linnea Olson Talks About Clinical Trials, Triage, Dating, Sex And Being A Writer (Part 2).

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