Tracey’s Story: Facing Follicular Lymphoma with Strength and Community
In 2018, I first started experiencing symptoms, severe lower back and abdominal pain, drenching day and night sweats, extreme fatigue, and strange muscle cramps. At the time, my doctors suspected lymphoma, but I was placed on a ‘watch and wait’ approach. Life went on, but in the back of my mind, I always knew something wasn’t quite right.
Then, in July 2024, everything changed. After two emergency department admissions for severe abdominal pain, my PET scan and biopsy confirmed what had been suspected for years, I had follicular lymphoma, stage 3B. Even though I’d been anticipating this diagnosis for a long time, hearing it confirmed was overwhelming.
Starting Treatment: A Global First
I was fortunate to already know about Professor Chan Cheah, a leading haematologist, specialising in Lymphoma, and I asked to be referred to him. Living close to Hollywood Private Hospital and Sir Charles Gairdner Hospital in Perth, I didn’t have to relocate for treatment. It felt almost surreal when I realised I would be benefitting from the very research I had helped support years ago with a donation towards blood cancer research in WA. I never imagined I’d one day be relying on these life-saving clinical trials myself.
I was accepted into the Soundtrack clinical trial, a cutting-edge global study investigating Rituximab and AZD0486 over a much longer trial period than previously used. On 20th August 2024, I became the first patient in the world to receive this treatment as part of stage 3 clinical trial. It was a mix of hope and uncertainty, but I knew I was in the best hands and that if it didn’t work I could always revert to the standard R-CHOP chemotherapy.
Navigating Side Effects and Challenges
Treatment hasn’t been easy. The first 2 1/2 cycles involved full day treatments twice a week every week, then fortnightly till cycle 8 and then every 28 days for the remaining 17 cycles. But after only three cycles, the tumours had shrunk considerably and officially I had a complete response, and was considered in remission which was incredible news. There is still a long road ahead to complete the 24 months of treatment. The reason for such a long treatment plan is to try and keep me in remission as Follicular Lymphoma is considered treatable and not curable so will likely come back. Research shows that if you remain in remission for at least 2 years it increases overall survivability.
Along the way I experienced fatigue, intermittent headaches, nausea, vomiting, muscle weakness, fluid retention, and allergic reactions, all tough to deal with. I’ve also required a PICC line for 7 months and now an infusaPORT central line for my treatment as my veins weren’t coping. There were additional side effects and issues with both of these requiring more surgeries. I also had to stop working as a physiotherapist as my fatigue and other symptoms have been significant, which has been one of the hardest parts for me. I never like to give in. But I’ve had to be sensible and put my own health first, not only for me but my family were also incredibly stressed that I was not looking after myself properly by trying to still run my practice. So I also needed to think about how they felt.
Waiting to start treatment was also incredibly stressful. From my first emergency admission on 5th July to my first treatment on 20th August, I knew the cancer was growing, and I just had to wait. That was one of the hardest parts mentally and waiting for the results of each follow up PET or CT scan.
The Power of Community
Despite the challenges, I’ve been surrounded by the most amazing support from my doctors and the trial team to my family and friends. My husband, 2 sons and Mother have been my rocks and I appreciate all the many sacrifices they have all made in helping me through this.
My community has stepped up in ways I never expected. Meal trains, walking buddies, messages of encouragement. People want to help, they just don’t always know how.
I’ve made a point of sharing my journey openly, not only to help others understand, but to encourage more people to support blood cancer research and to be there for loved ones facing cancer. Often people worry about saying or doing the wrong thing, so they do nothing at all. Just saying, ‘I want to help, please let me know how,’ can make all the difference.
Finding Strength Through Lymphoma Australia
As a Physio specialising in oncology rehab, I already knew about Lymphoma Australia, but experiencing their support firsthand has been incredible. I’ve used everything they offer, their website resources, patient treatment packs, webinars, support groups, and the Lymphoma Care Nurses. These resources have been invaluable in navigating treatment and knowing I’m not alone as often you don’t want to burden your family with all you are going through.
The Lymphoma Care nurses are so caring and they are a wonderful source of support for both the patient and family. They are so helpful with answers to any questions you have or what to expect. Sometimes you don’t take in all the information from your specialist as you are still in shock, so it’s great to have the nurses to explain or fill in any gaps in your understanding. They are supportive and reassuring which is what you need when your world has just been turned upside down.
When you have cancer you aren’t the only one stressed out though. It affects all your loved ones and often they don’t want to tell you just how stressed they are either. So it’s great that Lymphoma Australia has so many resources and information for carers and loved ones too.
I also found the online support groups and webinars run by the Lymphoma Care Nurses a great way to access new information, gain a greater understanding of treatment options, hear what others are going through and hear solutions to side effects.
The online support and the nurse care line was so helpful in that early stage when you are juggling a lot of decisions and they are quick to respond.
The patient packs were wonderful, especially the variety of products to help with those nasty side effects and the information booklets are useful for the whole family.
Living in WA I used the online support as over the past 18 months there wasn’t a regular face to face support group here. There was one recently though and sadly I was sick and couldn’t attend. I think in other states they are quite regular. I would love to be a part of a regular one in WA.
Advice for Others Facing Lymphoma
If I could share one piece of advice with anyone newly diagnosed, it would be: don’t be afraid of clinical trials. They can give you access to the most advanced treatments available. And if it doesn’t work for you there is usually another option and at the end of the day you are also helping further research towards better treatments.
Trust your doctors, they are the experts. Everyone’s cancer and medical history is unique, ask lots of questions, don’t be afraid to get second opinions and be your own advocate. Go into appointments prepared, and don’t be afraid to discuss your options.
As I continue on this 10 year trial, I’m still learning that there are many ups and downs along the way, side effects change, other things happen and I’m having to learn to be far more flexible and not get so stressed when personal plans go out the window due to changes. I’m now immunocompromised so now I avoid crowds and anyone who is sick, always wear a mask in public and also have an extra monthly infusion of immunoglobulins to help counteract that.
But at the end of the day, as long as I’m still in remission, changes in lifestyle to keep myself safe from germs is well worth it and it’s for a limited time.
Most importantly, do everything you can to help yourself. Exercise, rest when you need to, eat well and find a positive activity to stay mentally healthy, for me that is art, painting and ceramics. I can completely lose myself in the task and forget about all I have going on. In fact I used to run a class for some of my patients and they loved it too. And lean on your support network, they love you and want to help and make sure your immediate family has their own support or someone to talk things through.
We are so lucky to have amazing healthcare in Australia, and I’m grateful every day for the team looking after me and to all my amazing family and friends and to Lymphoma Australia.
I often say I’m lucky in an unlucky situation. I was in the right place at the right time—my pathology results came back on the final day of eligibility for the clinical trial, and I was fortunate to secure one of only 30 places worldwide in the safety run-in phase of the Soundtrack Trial under Prof. Chan Cheah, who I’m incredibly grateful to have as my specialist. As I was newly diagnosed, I had already completed all the prerequisites and only needed a bone marrow biopsy, which meant I became the first person globally to start the trial. I took that as a positive sign.
This journey is tough, but it’s also shown me the power of community, research, and resilience. Please help fundraise in support of Lymphoma, every little bit helps.
I’m hopeful for the future and determined to get back to doing all the things I love.
