By Paul Hampton-Smith, SA

5 minutes

Thinking back to when this all started, I feel very lucky. I have people in my circle of friends and family who are either no longer with us, or who are dealing with a far greater burden than me. The timing, too, was extraordinary, having moved into our Adelaide unit only a month before in November 2020, after two years of travelling overseas, housesitting, and living in a tiny caravan. It would not have been such a great place to discover a serious illness while driving up the Birdsville Track only a few months earlier! My family has been unbelievably supportive. My wife has looked after me throughout the rollercoaster and comes to every haematologist appointment with me. 

The activities to move into our unit were the usual chore, and I visited my doctor about painful ribs that felt broken and a painful back. Neither X-rays nor a physiotherapist could identify anything wrong, so I attributed it all to the heavy lifting from moving and soldiered on. My back had other ideas. On my 62nd birthday, just before Christmas, I couldn’t get out of bed. It took two weeks in hospital before the diagnosis of myeloma was confirmed.  

Similar to other people, I had never heard of myeloma before. I had lytic lesions (holes in the bone caused by myeloma bone disease) all over my ribs and several damaged vertebrae in my spine. I started a successful course of radiotherapy to shrink the tissue pressing on my spinal cord. My height is now reduced by 7cm! Fast forward to now, and I ride my bicycle regularly, such as the 8km commute today to the Cancer Council for an excellent seminar presented by one of Myeloma Australia’s Specialist Myeloma Nurses, Jo Gardiner. 

My first line of treatment was the standard of care: a successful autologous stem cell transplant, followed by daily maintenance lenalidomide, post-transplant rehab, and the revaccination program over a two-year period. 

Pain relief has been an important part of my supportive care treatment; I don’t know how I would get through life without it. I was initially started on a pain relief tablet called Targin (a combination of the medicines oxycodone and naloxone) but have found that a skin patch called buprenorphine works far better for me. I’ve also been admitted to hospital three times with respiratory illness but managed to bounce back. 

Three years after my autologous stem cell transplant, I returned to work full-time. The maintenance lenalidomide had slowly stopped working. I didn’t have any physical symptoms, but my Kappa light chains started to increase on my blood tests. They then reached the threshold of needing to start a new treatment. Luckily, I was eligible for a clinical trial using a combination of treatments including isatuximab (a monoclonal antibody), pomalidomide, and dexamethasone. The results were almost instantaneous, and I eventually became classified as having a “stringent complete response” according to blood tests, PET scans, and bone marrow biopsies. In other words, my myeloma is undetectable. 

This led me to talk to my haematologist about reducing the dexamethasone dose and stopping the pomalidomide all together because both medicines had caused me significant side effects. I was also able to stop my weekly IVIg infusions (IV immunoglobulin therapy) as my immunoglobulin levels had recovered. Today my myeloma remains under control with isatuximab and a low dose of dexamethasone. I also have eight weekly Zometa (bisphosphonate) infusions to strengthen my bones, and four weekly inhalations of pentamidine (an antibacterial medicine to reduce my risk of respiratory illness).  

Amongst all of this, a high PSA (Prostate-specific antigen) reading led to a radical prostatectomy, from which I am recovering well. Guys — don’t let up on PSA tests! I was lulled into a false sense of security by the PET scans, which, it turns out, cannot detect prostate cancer. The prostate had the time to grow past its normal boundaries before discovery. This highlighted how important it is to keep up with regular screening tests even though you are being monitored for myeloma.  I also have a greater appreciation of the huge difference in load on the health system. Prostate cancer: discovered in February this year; five months later, already in watch-and-wait mode with no medicines. Myeloma: fortnightly infusions and monthly specialist appointments for ‘ever’. 

In hindsight, six months before my myeloma diagnosis, I had indications of something happening to my health which I either didn’t interpret or ignored. I suddenly struggled to do a five-kilometre jog; at the same time, my Apple Watch showed a decline in SpO2 (oxygen levels) and a number of other strange changes. I now encourage my children and anyone else I know to look after themselves a bit more attentively! 

The trial treatment schedule requires me to attend the Royal Adelaide Hospital (and no other hospital) every two weeks, which can be very restrictive on my ability to get away from Adelaide. Recently, through a discussion with my haematologist I was able take a welcome treatment break and travel to New Zealand for three weeks. 

Thank you most sincerely to the entire health system, and in particular my haematologist and clinical trials nurse, who have looked after me so well.