The importance of online patient groups and 'The ROS1ders'

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Published: 25 Apr 2018
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Janet Freeman-Daily - The ROS1ders

Janet Freeman-Daily speaks with ecancer at AACR 2018 about The Global ROS1 Initiative.

The group, which can be found at ROS1cancers.com, includes over 200 ROS1 patients across 20 countries, and provides support, education and guidance on trial participation and drug toxicity to patients, then feeds questions and concerns to participating doctors.

Read more about the initiative here.

My name is Janet Freeman-Daily, I’m a metastatic lung cancer patient. I was healthy and active when I developed a light cough, kind of a [coughs] and we were going to be going on a trip so I asked the doctor for antibiotics which made no difference. When we came back from the trip everyone on the plane got an upper respiratory infection, my husband and son got over it in a week and I started coughing up blood and we said, ‘That’s not right.’ So I went back to the doctor, got more antibiotics which did nothing so they decided to do an X-ray. They didn’t let me leave the clinic until they did a CT scan and by the time I got home they called me and said, ‘You have something in your lung, it looks like carcinoma.’
I was diagnosed with advanced lung cancer, stage 3a, non-small cell. I had aggressive chemo and radiation and that shrunk the tumours but it didn’t take care of the problem. We thought maybe we could take the lung out now that the tumours had shrunk and I went through sixteen tests in fifteen days to discover that the cancer had already progressed and was now above my collarbone. At that point, however, I had learned of genomic testing and clinical trials in online patient groups and I arranged to get my tumour tested from these lovely lymph nodes. They tested it for a ten gene panel under the Lung Cancer Mutation Consortium protocol but I was negative for everything. So more chemo followed by more radiation which again took care of all the known tumours but by my first scan it was already in my other lung.

My doctor told me I’d be on chemo for the rest of my life, however, right after the scan I happened to be visiting my nephew in Denver and it occurred to me that I had my test done at the University of Colorado which is in Denver and I just called to ask if I could go over and say thank you for letting me be in the clinical trial. The head of the programme came down to talk to me and said, ‘We have two new genomic tests.’ I said, ‘Oh, really?’ and I asked them if one of them was for ROS1 because I’d learned from another patient in an online group that ROS1 might be common in patients who are younger, never smokers, adenocarcinoma, negative for the other mutations. He said, ‘Yes, one of them is ROS1.’ I said, ‘Do you have any tissue left?’ He said, ‘Yes.’ I said, ‘Go for it.’ Within a week he came back and told me that I had an amazing ROS1 rearrangement and once we’d determined that my tissue was indeed a progression of my cancer I joined a clinical trial. I joined that trial to take a pill, crizotinib, in November of 2012 and I have had no evidence of disease ever since, for over five years.

How are online patient groups particularly important?

When I was diagnosed with lung cancer, being a research and science geek, I asked around and one of my friends who was actually a very active advocate for kidney cancer, you might know the name e-Patient Dave, recommended an online group to me. I participated in INSPIRE and that’s how I learned about ROS1 clinical trials, genomic testing. Since then I’ve got involved in many online patient groups. They are a wonderful source of support, you can meet other patients with your type of cancer going to hospitals near you, having the same kinds of treatments, dealing with the same side effects and it’s just been terrific. Since then things have continued to evolve – we have lung cancer social media on Twitter which goes by the hashtag #LCSM. But also a lot of these patient groups are now starting to organise around particular genomic drivers. So we have one based on ROS1 for all types of cancers around the world that’s called the ROS1ders. You can find us in a group on Facebook under ROS1 positive cancer. We also have a webpage, ROS1cancer.com, and other groups have since been following our lead. So there’s now a group for ALK positive, there’s a group called EGFR Resistors and there’s a separate group called Exon 20 Group. All of these are organised with patients that are forming collaborations with researchers, advocacy groups, clinicians. It’s a great place to focus the information about how you get treated, get diagnosed and how you live with having those types of cancers.

What should a patient think about when considering a clinical trial?

There are a lot of clinical trials out there and they are on different things. Some of them are just testing the same drugs that are already out there; some of them are comparing a new treatment to an existing treatment. But for those of us who have particular driving genomes clinical trials may be our best option for treatment. For instance, with my particular one, ROS1, once I progress on this pill there are no approved treatments unless I want to try chemo again but there are several clinical trial options. So these patient groups, especially if you have a genomic driver, are a great way to learn about what your clinical trial options are or to find a source of a second opinion for a doctor who can help you find one.

It can be overwhelming to go on clinicaltrials.gov and try and find a clinical trial that works for you but there are also several clinical trial matching services. If you go to the Lung Cancer Advocacy organisations or other cancer advocacy organisations they can usually help you find one. That can help narrow it down quite a bit. If you’re thinking about a clinical trial be thinking about are you willing to travel; can you afford to cover the medical costs associated? While the trial usually pays for the medications and the specific treatments in the trial, at least in the US our insurance pays for the medical costs, the labs, the scans. Be thinking about how much time you can take away from work and family and how much risk you’re willing to take. There are different levels of risks in clinical trials, however, boy, it sure worked for me.

How has your outlook changed over the course of this journey?

When I was first diagnosed I was considered curable. When I progressed it was stage 3b/4 so we think it’s only in one spot, maybe it’s curable. By the time it went in my other lung, okay, you’re not curable and I was told I’d be on chemo for the rest of my life and it would be short. I had to ask my doctor how long it would be because I was at a point of having to make a decision about my life insurance because the costs were going up. He said, ‘Maybe two years because you’re healthy otherwise.’ Well, now I’m on this clinical trial drug we have no idea what will happen. I’ve had five years, I’m really an outlier. For most people on this drug the cancer comes back. We have no idea where it’s going to go. I have some other treatment options after this but I also know who the good doctors are and who the medical teams are so I have hope.