Back in October 2014, I had one of those annoying coughs that just wouldn’t go away. People kept saying, ‘oh you’ve got that 30-day cough - isn’t it annoying?’ I coughed that hard that I ended up with a hernia in my chest. And it lasted more than 30 days.
With the prompting of my family, I went to my GP who diagnosed pneumonia. I thought, hang on, that’s an old man's problem! I’m only 43!
The cough remained and worsened. Thankfully my GP, Dr Meagan McLoughlin insisted that I go for a CT scan. During the scan, the staff asked if they could scan some more, and then some more again. They asked how soon I was going back to the GP. By this stage, I knew something wasn’t right.
‘Non-Hodgkin Lymphoma’ were three words so foreign to me that I had to ask the Dr to write it down for me.
I then had to explain it to my wife and later to my daughter. I was stage 4. The Royal Adelaide Hospital confirmed diffuse large B-cell lymphoma (DLBCL).
Fast forward into treatment, there’s chemotherapy and lots of it. 8 cycles plus an extra 5 administered into my spine. Fortunately, I handled the treatment well and was told I was in remission mid-2015.
Re-invigored and keen to get back to some level of fitness I hit the gym and was loving it. Fast forward again to early 2017 I injured my shoulder exercising which swelled noticeably. My normal GP wasn’t available and the alternate Dr didn’t so much as touch the shoulder, telling me ‘that it should work itself out’. An Occupational Therapist/ masseuse found a lump in my armpit that afternoon within two minutes of looking at me.
So here we go again.
Stage 4 again, my Haematologist Dr Pratyush Giri explained that this time around he would be giving me ‘the mother of all chemo’, which he also refers to as ‘legalised poisoning’.
True to his word, there was a lot of chemo, I then had stem cells removed to later be re-infused (autologous stem cell transplant) once they were finished with the high dose chemo, which was twice a day for a while.
By June I was out of the hospital and heading into remission again.
Back into the gym to regain some muscle which was going along nicely until, yep, mid-2019 I started losing weight instead of putting it on. Being more in touch with what my body is like I knew that something was awry.
My blood test didn’t indicate a problem but I insisted on a scan which was almost identical to the very first back in 2014. Stage 4, for a third time.
Enter the Clinical Trials team and an immunotherapy drug called Mosunetuzumab. 10 cycles later I thought I’d be in remission and likely heading towards another stem cell transplant, this time with cells from a donor. But yet another scan showed that there was still active disease so plans changed yet again.
With COVID-19 becoming a reality, the initial concept of heading to Boston, USA was shelved and I instead headed to the Peter MacCallum Cancer Centre in Melbourne to begin CAR-T cell therapy. The first collection of cells that were collected failed to multiply when they were in the laboratory (in the US), but that process took 8 weeks. Another trip to Melbourne, another collection and thankfully a quicker turnaround, although the result still wasn’t perfect. My cells didn’t quite meet the standard but we decided to proceed.
Conditioning chemo and then my whiz-bang CAR-T cells were put back in, all this during lockdown conditions in Melbourne.
Which brings us to now. The CAR-T cells are in, they’re just not working.
Doctors are wanting to use a drug, Lenalidomide to hopefully ‘kick-start’ the CAR-T’s. It’s used and funded for use in other cancers, just not my particularly persistent type.