I came across Leanne recently as an applicant for a CCReW Support Scholarship. When I called Leanne to let her know the application had been successful, we got to talking about her experiences looking for clinical trials as a parent wanting options for her son. As with so many people I speak with, her path to clinical trials was difficult and time consuming. So I asked if she would mind sharing her experiences, to highlight some of these challenges, and give some pointers to others that might be wondering how to go about it.
Leanne, what happened that led you to a search for clinical trials?
Our son Tom was diagnosed at the age of 16, with osteosarcoma, a rare bone cancer predominantly in young adolescents. He did the first line of treatment, and we thought that had been successful. Unfortunately, about 12 months after he finished his first line of treatment tumors appeared in his lungs, which is often where the cancer spreads to. Initially, we didn't realise that there was no other decisive treatment options available. When it became apparent that he probably wouldn't survive this cancer, I wasn't prepared to accept that. I guess as a parent, you want to do everything in your power to ensure that your child outlives you.
I embarked on researching what might be available knowing that it
would probably need to be a clinical trial. I didn't really have any
understanding of clinical trials, and I really didn't know what was out there.
And it really required persistence and a lot of time. I took a leave of absence
from my job to dedicate myself completely to finding a treatment for Tom. My background
as a journalist helped in terms of research and being assertive. We saw other
families going through the same treatment as Tom, and they felt quite
overwhelmed at the system, as did I. We didn’t really know what the next step
was, because we weren't provided with any information as to where we
could find clinical trials, or how to go about that. I didn't know whether or
not our oncologist was across all trials that were available. I knew they were busy seeing patients, and that
they may not even have the time to know exactly what was going on out there.
At any point up to then, had any of your
clinicians talked to you about research at all?
Not really, no. They said that if there was a clinical trial available, that might be an option. But at the time, there wasn't anything that was known to be on the horizon.
So you went looking for yourself?
I embarked on obtaining a second and a third and a fourth opinion,
because I wanted to make sure that I had the best available information. That
uncovered that there really weren't any clinical trials available at that time.
One oncologist mentioned the MOST trials involving genetic testing. They also mentioned there was another drug trial in
the pipeline, but it was caught up in red tape waiting to start.
Then one day out of the blue, Tom’s oncologist in a private oncology clinic raised the fact that there was a potential immunotherapy trial. It wasn't specific to osteosarcoma, but might be something we could try. So that was our first exposure to a clinical trial.
What happened next?
It happened very quickly. We didn't really have a lot of time to think
too much about the trial – about 24 hours. I didn't know whether or not this
trial was the right thing for our son, or what the impact would be. We were
given a lot of information, but it was quite overwhelming. It was written in a
way that was hard to understand, and very clinical. It wasn't clear to me. You have to remember that you’re dealing
with parents who at that time are incredibly distressed.
Thankfully, though, there was a trial coordinator who was great. He sat
down with us and talked us through everything. I had a lot of questions at the
time, and then follow up questions and he always made himself available. So
that was good. I was able to learn about whether or not this was a trial that
was good for our son.
I had also come across a site in the US called Cancer
Commons. They were
able to look at what trials were available globally. It is staffed by oncologists and researchers who
volunteer their time. They were able to explain in simple terms what the drugs
were, and what the trials were attempting to do. So I guess through liaising with one of these specialists in the US I gained confidence that this was a trial that
we should try for ourselves.
I would liaise with Cancer Commons quite often when I came across other trials that might be happening globally, just to see whether or not it would be something of interest to our son. Most of the trials were first phase trials overseas. We didn't feel they were the right option for us at that time as we wanted to explore and exhaust everything that was happening here in Australia.
So you ended up doing that immunotherapy trial?
Yes, Tom did. Unfortunately, three months into the trial it became
apparent that it wasn't actually having an impact. So he was removed from that
trial, and I continued my search yet again.
As I mentioned earlier, I was aware of this other clinical trial in the
pipeline. I started exploring that more with the oncologist in the public
system who had told me about it. I was very persistent in following up with the research lead as to when the trial would start. I joke with my husband that think it was through my tenacity that they
eventually commenced the trial here in Brisbane. It was trial they had already
set up in Melbourne and Sydney, but hadn't yet conducted a site visit
in Brisbane. I begged the research lead to start the trial as at the time I felt my son's life depended on it. I think my persistence worked and a week later they did a site visit.
So Tom took part in that trial. Unfortunately, again, the toxicity of
that trial proved too much for him. He was removed from it. That was pretty
much the end of the road for us in terms of trials. It didn't stop me from
looking, but there was nothing available.
I think what I found interesting with the whole medical
system and the clinical trials, etc, is that I'm an educated person who
obviously has a background in research and deciphering difficult or complex
information. But there's a lot of people who aren’t. They would find it
incredibly overwhelming and confusing trying to find a clinical trial. And when you do, often, it happens quite quickly.
I think we had we were given about 24 hours to decide for the first trial. That's not a criticism of the oncologist. It was an opportunity that she saw arise that wasn’t specific to his cancer, but was something that we could at least try. There was one space on the trial left and so she put Tom's name forward. The trial was with a pharmaceutical company.
Did you have any concerns about the trial being run by a company?
No, not really. They had very stringent rigor around the trials,
certainly in terms of the preparation. Because the drugs had the potential to
be quite toxic, Tom had to have a lot of tests before he could go on the trial.
To start with, he couldn't go on one of the trials because they found a weakness in his
heart, potentially caused by previous chemotherapy treatment. So they needed to treat that first. Ultimately, we rectified that
problem and then he was able to join the clinical trial. While it delayed him participating in the
trial by about three months, the rigour around a clinical trial is important.
Do you think that's an unanticipated benefit of
trials - all that extra testing to make sure it's safe for you to go on?
It's definitely a benefit. Yes, for sure.
So I’m reflecting on that point you made about the
complicated nature of the information provided about trials, especially as I
look at how we support people with information on what’s available. Do you
think its worthwhile giving a lot of detail to people, or is it just going to
overwhelm them?
You can’t underestimate how people's minds are working at the time when
they're dealing with a health issue, and particularly when it relates to their
child. When you're going through that, you are very much
traumatized and your brain’s just not operating as it would normally. But, everyone's going to be different. Some
people are going to want everything, like I do, while others may not want that much information. It's
hard to tailor how much information you provide because everyone’s going to be different. I think maybe what you
can do is initially provide information in tangible pieces that are easy to understand. And then, given them the option of more information if that is what they want. Of course, it also depends the nature of the query.
Reflecting on your
own experience, if someone found themselves in a situation where they thought
they might explore what research options are available, what would be your
advice about how to approach that?
That's a hard one, because there's no one place to look. In an ideal world, it
would be amazing if there was a central database where you could find information on all clinical trials around the world, even those on the horizon.
The first thing I did was approach a friend for advice as she had been through an aggressive form of breast cancer. One of the first things she did was find herself a support group, online. And so that's what I did. I went online and found a couple of different support groups. And one of them to this day, I'm still part of.
You have to be careful which groups you participate in. The group I selected was set up by a mom who lost her son to this particular cancer, but she also had a science background. She wasn't a medical person, but she was someone who understood science, and wasn't about to start advocating for any treatments that weren't based in science. You need to find a support group that suits what you're needing. It's a great way of finding out other information about possible clinical trials that someone else in that particular group may be aware of. So that would be my first suggestion.
Next, I Googled.
Do you recall coming across the clinical trial registers
when you Googled?
Yes, I did. Definitely have a look at the registers that are available.
Then, ask your specialist lots of questions. And don't take no for an answer.
There may be other options out there, there may not be. But I suppose for peace
of mind, as the patient or carer, you want to know that you've exhausted all
options. And the only way to do that is to just keep asking for more
information.
I would often say to an oncologist - how do you know you are across all trials that exist here and overseas? What information do you tap into to make sure you know everything that might be able to help our son? I was often referred to the clinical trial registers. However, those registers don't list a clinical trial until they are close to recruiting. For me, I want to know what is on the horizon. By knowing there might be something out there that can save your loved one gives you hope and the ability to sleep at night.
For instance, the trial that I'd found out about that was in the pipeline -
it was through one of the additional medical opinions we obtained from a third oncologist. While information about it would have ended up on the register, that would not have occurred for some time. You need to be able to plan ahead as often some of the clinical trials require you to abstain from certain treatments in order to be considered for the trial. There were times when I felt quite overwhelmed. I didn't was to miss finding a key piece of information about a treatment which could mean the difference between life and death for our son.
I've always said there's a missing link between the patient and the
oncologist, there's a missing person. I know it's not possible to have this
because it would be very resource intensive. But when Tom was on the clinical
trials, the clinical trials coordinator was our go to person. I asked them not only about the clinical trial,
but for information on what we might be able to do if this trial didn't work. They knew a lot of information and I wanted all information that was available.
I don’t know if that’s a really good answer to that question, because, unfortunately, my method was very research intensive. I don't think there is a straightforward way to finding out about cancer treatments, particularly if the cancer is rare.
I think you you've hit the nail on the head - it is
incredibly intensive looking for trials. And adding to that, what's available can
potentially change every week.
Absolutely. I think the other thing I would recommend to people is
finding out what other groups are available that might be specific to your
cancer. For instance, I stumbled across the Cooper Rice Brading Foundation. And
it was actually through that organization that I then became aware of
Australian and New Zealand Sarcoma Association. Its a peak body for the sarcoma community. They collaborate across multi-disciplinary teams working together to discuss sarcoma cases and funding sarcoma research. They are very aware of what is on the horizon when it comes to research and clinical trials. I reached out
to them to get more information about what options might be available.
It's really a process of just trying to find groups that are relevant to your type of cancer and drilling down into information that they may have. And sometimes it can be just little nugget of information that sends you off then on another tangent that opens up more information for you. So yes, very research intensive.
So we haven’t actually talked about the trial
experience itself. Once Tom was on the trial, were you happy? Did you feel
supported? What was it like to be on a trial?
We felt very supported I think because when you're on a trial, you have
a clinical trial coordinator - a go to person. I felt that you had better
direct contact with the research team if you had any questions. So we found that a very good experience.
Were both trials similarly good experiences?
They were both good experiences. One was in the private sector and one
was in the public sector. Two different hospital systems and both
equally good experiences.
How important do you think that connection in person
with a trial coordinator was to your experience? If you didn’t have that
person, would you feel you're kind of hanging out there alone?
Yes, I would feel that I was hanging out there. I think having
that personal contact with the coordinator is important.
Any last thoughts?
I always say to people when I'm giving them any advice, just ask
questions. You have every right to ask.