Before being diagnosed with blood cancer in 2010, Adelaide man Graham Lewis led an extremely active life. As an ex-state 2nd XI cricketer, he balanced a busy career as a business consultant with regular bike rides of up to 200km a week. 

Feeling well and experiencing no symptoms, the first sign anything was amiss was when Graham discovered lumps in his groin – something that quickly set off alarm bells for his ex-nurse wife. He was quickly diagnosed with a blood cancer called mantle cell lymphoma and started what became an 11-year treatment journey. Graham now spends much of his time in a recliner chair, as his treatment has left him with life-limiting muscle damage, skin issues and a loss of strength that means he’s unable to perform basic daily tasks. He believes “systemic deficiencies”, including breakdowns in knowledge and communication, may have contributed to his current physical condition.

Misinformation from the start

In the earliest stages of his illness, things went well for Graham. After receiving an autologous stem-cell transplant in 2011, he quickly recovered and was back to work within five weeks. A relapse in 2014, however, led to him receiving an allogeneic haematological stem-cell transplant – a process he feels he was misinformed about from the start.

‘I was given outdated and brief information on what to expect post-transplant”, says Graham, “and I left hospital with only a single A4 piece of paper of instructions for recovery, which mentioned graft versus host disease but gave no details. [Graft versus host disease, or GvHD, is a common side-effect of an allogeneic stem-cell transplant and happens when the T-cells of the new immune system attack the recipient’s cells.] If I’d understood the severity of what could happen, I would have paid more attention to what was going on in my body”. 

For 65 days after his transplant, Graham seems to be recovering well. However, his concerns over emerging digestive issues – rapidly worsening vomiting and diarrhea, oesophagus pain, severe nausea, inability to eat, weight loss and mouth ulceration – were dismissed as not serious, and something that would resolve. It was only after being rushed to hospital with severe and uncontrollable diarrhea and vomiting five months later – by then having lost mobility – was he given a diagnosis of gastrointestinal graft versus host disease and a cytomegalovirus (CMV) induced colitis (issues whereby GvHD and the CMV damages the intestines, making it hard for your body to digest food and drink). 

As his condition worsened, Graham went on to experience such intense skin issues that the skin of his feet detached – something that left him unable to walk and requiring daily wound care. Again, he was told these symptoms were not consistent with GvHD, with a number of specialists providing inconclusive and conflicting diagnoses. 

“When the GvHD was at the stage where it was clearly not responding to the treatments that were being provided,” recalls Graham, “the haematologist seemed to be at the end of his knowledge – I was racking my brains as to where I could go to get help…. I think in a smaller center, when things get a little bit more unusual, the knowledge base possibly isn’t there.”

Going on to experience extreme muscle pain and a loss of strength in his neck, Graham was assured by hospital doctors this wasn’t related to GvHD – later discovering that hematologists in the same unit  were simultaneously part of a study (eventually published) on the much higher incidence of muscle myopathies in transplant patients than previously thought. Graham considers his current muscle damage to have stemmed from this period of his when the muscle condition was not investigated. 

“We made a lot of assumptions on how the haematologists were working on the GvHD. We assumed there was a multifaceted team and information-sharing occurred. As we started to delve further, we realized that wasn’t necessarily the case.”

Graham’s condition continued to deteriorate – culminating in him experiencing a dramatic loss of function in October 2019. Eventually being taken to the Peter MacCallum Cancer Centre in Melbourne for Extracorporeal Photopheresis (ECP) treatment (a well-established procedure for GvHD), the positive effects of the ECP were found to be hindered by the previously uncontrolled muscle issues, and the muscle condition returned.  This required additional treatment and hospitalizations in Adelaide

“When I was discharged I was severely disabled and reliant on a wheelchair,” he says. “I required assistance with just basic tasks like dressing, I was confined to a recliner and only went out for essential appointments. My wife and I lived in a constant state of despair – today was no different to yesterday, tomorrow was going to be same as today. There was no escape, for either of us.”

Hope for the future

Eventually Graham was offered a glimmer of hope – getting access to a drug (Ruxolitinib) via a compassionate program.  The drug has shown promising initial results for GVHD. His life today, however, remains unrecognisable to what it was pre-transplant, and his case is now under formal review. 

For Graham, the issues around his treatment stem from a lack of expertise, teams working in silos and limited communication between often overstretched physicians. He also feels much of the advice given by doctors is overly influenced by personal factors including their age, personality and cultural background. 

“If everyone was singing from the same hymn sheet and following the best practice set out in an OCP,” says Graham, “those variables would have less impact.” 

Graham feels Optimal Care Pathways (OCPs) could help future patients avoid the treatment experience he feels has had such an impact on his current quality of life. 

“I think it’s important that the leading-edge medical advice and treatment options are available to everyone who enters into the blood cancer arena”, he says. “I’d like to see the OCPs as a tool for bringing that collective knowledge together into one place. They could keep the treatment approaches updated with what’s available, so individuals can get the best treatment that’s available at that particular time and help patients under circumstances of high-duress make informed decisions.”

Read more about the OCPs here.