Jody's Fundraising

My Why

I have been living with an aggressive, recurrent Giant Cell bone tumour in my tibia, for over 11 years.

Harold was first removed in London, back in 2013 and after two surgeries I finally moved back home to Australia. Oh and yes, I named him, Harold ?

On returning to Australia and initially being told the recurrence rate is very low, less than 5%, Harold was back! I was sent to Chris O’Brien Lifehouse to discuss going on a clinical trial for Denosumab, a drug that was currently being used to treat osteoporosis. After hours of waiting around and finally some fanfare from the doctors, I found out the drug had just been approved to be added to the Pharmaceutical Benefits Scheme and that I was going to be the first patient in Australia to have it prescribed for this type of tumour. The problem then, no one knew what codes to put on the script, which meant a couple more hours of waiting around for some processes to urgently be put in place.

The treatment with the drug was an injection, every four weeks. After approximately 6 months my X-rays were starting to show my bone growing around the edges of the tumours and after approximately 18 months, Harold was fully encased by a hardened layer of bone. About 2 years on the drug, and no additional changes in my X-rays, oh, and the most intense 3 days of migraines and nausea after each injection, I started to ask whether I had to stay on the drug as there had been no further change.  My reasons for wanting to come off the drug, despite the migraines after each dose, the main long term side effect is necrosis of the jaw bone, which is more common in women. It took me another 3 years to finally convince my surgeon I could come off of the drug as this had never been done before. (I also found out later that 20% of participants on the trial pulled out due to the migraines alone.)

My surgeon finally agreed, on the proviso, that the encased tumour be removed before stopping. This surgery, in late 2018, caused my cartilage to crumbled, which meant my surgeon had to break my fibula and attach the lower half to my tibia with five screws. This in itself, was an extremely long recovery, 10 days in hospital with an open cast, followed by another general anaesthetic to change the open cast to a full plaster cast, then 6 weeks in the full cast, (right over the hot, hot  summer), and then followed by 9 months in a moon boot. So no driving and 100% reliance on others to get me anywhere. Living on a very steep hill did not help with my situation.

After about 10 months of having stopped the drug, we discovered Harold was back and my next surgery scheduled for early 2020, right as the world was going bat-shit crazy with Coronavirus.

I had been in chronic pain from before I was diagnosed, right up until the surgery in 2020, so when I was advised in late 2022, Harold may be back, I didn’t quite believe it!! I was no longer in any pain!!!

After many scans later, all with undetermined results, “too much hardware” to see clearly, I had to go in for another biopsy and perhaps surgery to again remove Harold. This surgery was done in early 2023 and it was confirmed the tumour was back. Not only was it removed, but so were all the screws as my ankle bones were now fully fused to each other. Without the screws I could now go back to having MRIs and there was no longer a chance of a blocked view.

I was advised following my last surgery, that my tumour was more than likely going to continue to come back and my only options were, to go back on the drug, which I didn’t want to do; radiation, which was not advised or continue to have surgeries, which would ultimately result in amputation. So great options!!

I have been back on the drug now for 2 years, starting at 8 weeks apart and now 12 weeks apart. We are continuing to monitor that this lowered dose will not cause any further recurrence and with my next scan / appointment with my doctor in early May, please keep your fingers crossed for a good report. Thanks Jody x