I have a partner with 2 young kids, 3 older boys from a previous relationship. They've been great support through this process and I'm going to be relying on them in the near future again. Ten years ago, I was diagnosed with multiple myeloma. It's been an interesting journey. I've relapsed 12 months ago, so I've had 2 stem cell transplants in that time.
So it looks like I'll be doing another stem cell transplant soon. I've been a trial participant, an active trial participant over the course of the my treatment.
Most recently, I did a zoster virus trial, the double blind trial. So I don't actually know if I received the the actually attenuated virus. My first trial was for a stem cell mobilizing factor called Mozobil. STEM cells are a necessary part of transplant. My doctor suggested I try it and it's a great success. But I have to say, it was a tough trial, but I had 3 million stem cells sitting in the in the freezer. And in fact, when I needed them for the second transplant, there they were. What it did, I think, as it sort of set me on the course saying, okay, and trials can produce good results.
So then I became I'll probably get much more engaged in the trial process when I became much better after the transplant. I had this period of about 7 years of pretty good health. In that period, when I was no longer so much absorbed in my own welfare. I started thinking, Well, okay, how can I engage and be participate in the cancer community. I was a committee member on the Myeloma Foundation. I got involved in peer support in Cancer Council and they were all rewarding things. But probably the thing that has been the most rewarding really is being involved in trials.
Then I started realising that actually talking to people about my concerns and engaging and inviting other people into the process, I suddenly realise actually cancer is a bit of a team sport. It's not actually an individual sport and the more you can involve people in your care, actually the easier it is, it’s sharing your fears and concerns. It shares the load. The staff that were looking after us, they would, you know, greet you with open arms and the doctors the same. And you would say you're getting the best possible health care, you know, while you're there. And even that is I discovered was a huge advantage because you're getting like a second opinion for free. But it's actually not a bad idea to get a slightly different view. On a couple of occasions that's been quite valuable to me.
With a trial they devoted almost to your wellbeing and care, and it's a very supportive and positive dynamic. And of course because they've got a slightly medical research background, they're great sources of knowledge. So you can ask them about anything, they can talk about what's going on in the field, you know, what are their sort of potential promising drugs that they're looking at or trials. So you suddenly got access to all this information from people right at the coalface. You come away feeling quite energised by it. You have these opportunities to draw positives. And I think that's what it is. You know, the trial is a just a very nurturing and positive environment because, you know, you've you've just immerse yourself in this community of people who are all trying to help you or help the cancer community generally find improved cures, much better than sitting on the backside at home feeling sorry for yourself.
You're part of a community, and I think we all get something out of being engaged in that community and we are uniquely placed as people with a certain condition or cancer to help take all that investment and turn it into something good. If we don't do that, then that investment doesn't count for anything. If I'd say to anyone who's contemplating doing a trial, if you're going to do it and do it properly, stick with it, you know, follow it through. Every day I look for ways to find positives in the otherwise bad things that define having cancer. So this is one of them. You know, I think some of the best times or the best experience that I've had have actually been involving trials. You come away feeling, well, that was I feel good about that.
Can you really be enthusiastic about participation in a clinical trial? Well, yes you can. Let me take you through my reasoning as to why I am a passionate advocate for trial participation.
I have undertaken 4 trials. Two for promising therapies that unfortunately did not produce the outcomes necessary for enough patients to warrant advancing the therapy further. A very successful trial for a stem cell mobilizing drug, and a double blind trial for an attenuated shingles antibody.
There are a number of reasons that make a compelling case for being a willing trial participant. Maybe these reasons will resonate with you.
It helps to have a serious illness
In 1996 I was diagnosed with multiple myeloma, an incurable but treatable cancer. Nothing focuses the mind more than a diagnosis for a serious illness. I will be perfectly honest with you, if I was healthy or had totally recovered from a curable cancer I might not be quite as motivated. However, for the other reasons I outline below, I suspect I would be a trial participant regardless of the diagnosis.
Trial participation is remarkably low and this holds back medical progress
According to some estimates, fewer that 3% of adults with cancer participate in clinical trials! Don’t you think that is unbelievable? Given the continuing search for a cure, I am totally amazed that we are not all falling over ourselves to participate in trials. Surely we should be super-motivated to help ourselves and the many friends we meet on our cancer journey.
Trial participants tend to do better than those who don’t participate
Participation in trials might actually do you good. No guarantees here, but in aggregate, that is what the data suggests. This might be because trial participants get access to novel treatments not available to the general patient community. It may also be that there are some benefits from the extra attention you receive from the health professionals running the trials.
For me, one trial actually led to a successful stem cell collection when 2 previous attempts had failed using conventional approaches. I used these stem cells earlier this year when I relapsed. I don’t need further convincing!
You meet really smart and motivated people
There is something quite satisfying about reviewing your situation with highly qualified health professionals. This is in no way to denigrate the trusting relationship we all establish with our treating oncologist/haematologist, but a (free) second opinion is pure gold, especially for such a difficult cancer like myeloma. It’s good to have your assumptions about the best treatment strategy tested, even if nothing changes as a consequence.
I am also in awe of the trials teams and how competent and motivated they are. How could I not want to help them in their quest to improve cancer therapies for people like me?
I might actually help the cancer community
Most people who participate in a trial are motivated by the possibility that their involvement will improve the lot for fellow cancer patients, even if that is some time in the future. This is altruism at its best. Trial participation is one of the best things you can ever do. Try it, you will feel great.
I have the time and I am available, and what’s more I meet the entrance requirements
Not everyone can participate in a cancer trial. First, and most importantly, you have to have cancer (actually that is not strictly true. In some trials, healthy family members are sought for trials). But my point is, if you are well enough, you meet the eligibility criteria, and can afford the time, you are uniquely placed to be part of medical progress. You are special, and you can make a difference.