Like many people, I was looking forward to retiring, travelling, and trying to get fit – yet I was having trouble even walking up steps and certainly had no chance on a steep hill.
My name is Susan Booth and in 2021 I was diagnosed with AL amyloidosis secondary to multiple myeloma.
A stress test referral from my GP to cardiologist Dr Michelle Butler identified some thickening of the heart muscles and she suggested a cardiac MRI. Michelle then had real concerns and made a further referral to a haematologist. I didn’t think too much about the referral and thought I would wait a while as I was busy travelling for work. Michelle had another idea and insisted, if possible, I attend the haematologist the same week.
Fortunately, Dr James Morton at ICON in Brisbane would see me before that week ended – no work travel for me! Even before formal diagnosis James began a treatment plan if the diagnosis proved to be as he suspected. It seems there was no time to wait. I was lucky to have an accurate diagnosis so quickly. I felt anything but lucky – frightened, incredulous, lonely – certainly not yet accepting how sick I apparently was.
As I had a dual diagnosis, I sought to reach out to the myeloma community primarily because I had at least heard of that disease. They suggested that I would be better off seeking support from an amyloidosis association. My symptoms were classic cardiac AL amyloidosis – I couldn’t walk up a flight of stairs without stopping halfway, but fine on the flat, swollen ankles and weight loss.
During the first 4 or 5 months of treatment most of these symptoms got worse but my blood results were good. My first regime of Velcade Revlimid Dexamethasone (VRD) was working although I had many infections, drug reactions, constipation, diarhorrea and fluid retention along the way. Most AL patients will be familiar with this laundry list of symptoms and so many visits to address the endless symptoms that seem to arise – gastroenterologist, cardiologist, lung specialist, dieticians, seeking to improve one symptom after another of this multifaceted disease. Over that first six months good days were rare. My ‘team’ of doctors led by James Morton worked closely together at every step as each challenge arose. I felt supported by the medical team but otherwise there was no support other than my husband, family and friends.
A planned stem cell transplant was delayed when I developed sepsis via a severe liver infection. Three weeks in hospital trying to find effective anti-biotics, then 8 weeks hospital-at-home meant that there would be no stem cell transplant in the short run. As other patients have noted, high temperatures should be taken seriously: lesson learnt!
At about this point, I finally found fantastic support through the Australian Amyloidosis Network (AAN) and particularly the patient advocate Pat Neely. Until the conversation with Pat, it had been a lonely journey. Few in my circle had even heard of amyloidosis let alone knew anyone who had it. But one phone call with Pat changed my whole perception and understanding. Here was someone who not only had the professional skills to counsel a patient but had such deep knowledge about amyloidosis and great empathy with patients.
I slowly recovered from the infection and maintained complete response from the initial treatment. During this time, I was on no treatment and got stronger every day, I started to be able to walk up hills and life was good – was this the start of my retirement?
After nine months however my MM paraproteins began climbing once again. This time I could talk to Pat, and I knew others with the disease. It made all the difference.
As well, the new DVD regime (dexamethasone, Velcade and daratumumab), was a wonderful, almost side effect free treatment for me. My numbers soon improved and my doctor allowed me to travel to Tasmania for a holiday for a month and have my weekly treatments in Hobart!
The combination of a very supportive doctor along with Pat Neely meant this time I saw my treatment as part of living with the illness. Given I felt so well, and my heart seemed to be functioning better there was consideration again of a stem cell transplant. In consultation with cardiologists and Dr Peter Mollee, the director of the world class Princess Alexandra Amyloidosis Clinic here in Brisbane, it was recommended that it go ahead this time.
I responded very well to the stem cell treatment. I had the usual symptoms of fatigue, but they soon disappeared. Still there were three months of great care to ensure no infections during the vulnerable time following the treatment.
I was well enough that my husband Peter and I could travel to the Sunshine Coast. By then, we both needed a break. Here we could have visitors in a controlled environment while at the same time I practised wearing scarves and then wigs. I was glad it was winter!
Post stem cell treatment, it’s a bit like a job again – many visits to the clinic and all the necessary injections – yet it seemed worthwhile at the time and it still does.
I remain on maintenance Daratumumab and IVIG monthly and feel good. The official label is “complete response”.
And … retirement has truly started. More time for fun with my husband, wonderful friends, and family, travelling, gardening, dining out, eating in, a chance to advocate for many and diverse things that are important to me, volunteering, reading, surfing and generally keeping fit – there are now plenty of good times ahead. There’s nothing like a serious illness to help put everything in life in perspective.
I also now want to help others now navigate this strange journey. I’m a Queensland representative on the Patient and Family Advisory Committee (PFAC) of the AAN and PFAC representative on the Amyloidosis Alliance which is the international voice of patients. Australia (through the AAN) along with more than 20 other patient associations make up this important international alliance, more information about the alliance can be found here. The alliance supports patients associations in various ways including advocacy for patients. One example of this is that soon the alliance will distribute an international survey seeking information about the patient experience around the world. The AAN has agreed to support the survey and encourages Australian patients and their carers to complete the survey. Watch the AAN website for full details in the coming weeks.
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