I am one of the lucky people who has managed to grow a successful business and have a family. However, I too am still paying the price of VHL. For example, I now need to live between LA and Sydney, I am away from my family for half a year. One of my brain operations left me with 8 months of rehabilitation, relearning how to walk and talk. I also had to close a business I invested 2.5 years and millions. When I was diagnosed at 19 and told I might very well be dead by 30 years, I lived as a victim of this condition for 13 years, now I am an empowered individual.
More than my personal need and the need of the whole VHL community around the world, Belzutifan is incredibly important to non-hereditary cancer patients as well. Currently, studies are being conducted regarding the use of Belzutifan for other non-hereditary cancer patients in America, and it’s said that the drug works for them, too. These reports have not been made public yet but that’s what I’m aware of. So, in my opinion, to have the Australian government make an investment to support this technological development in medicine is a wise investment for curing cancer as a whole.
My story with Belzutifan started at San Francisco (my last destination before COVID and my first destination to fly to after COVID) I experienced a headache for 4 straight days.
The last time I had a continuous headache I ended up being operated back in 2005, it was my first brain operation. Knowing that I’ve got 6 brain lesions, I got worried.
When I called my doctor in Australia, she recommended I reach out to Stanford VHL department. In the process of getting my MRI I discovered the cause of my headache. It was the hotel bed, nevertheless, before I went back to Australia, one of the medical coordinators from Stanford invited me to attend the annual VHL Conference a few months later in October 2022.
During the first half of the conference, medical doctors talked about the impact Belzutifan had on the VHL community in America. The second half of the day I remember one diagram used by a scientist about the Belzutifan clinical trials. On the left side of his diagram were all these dots sprinkled everywhere, which represent the number of VHL-related operations (about 300 patients). Then there’s this line in the middle that represents the time these patients had started taking Belzutifan over a few years. On the right side of the line, there were only a few dots, demonstrating how taking Belzutifan radically decreased the need for VHL-related operations on these patients.
I also met the leading scientists (now a Nobel Prize winner) who was leading the 2-billion dollar investment made by a large pharmaceutical company.
After speaking to him and taking part in the VHL Conference, I knew right then, I didn’t have the luxury to wait for this medication to become available in Australia.
I have a cousin Tom (with VHL) in America, who told me about this medication. Sadly he died at only 46 years old in 2021 before he had a chance to be on it. When he told me about this medication, I didn’t understand the power and the magnitude of this medication until I attended that conference.
With 3 solid lesions growing at 8mm on my remaining half kidney, I had to do whatever it takes to get on this medication. I paid AUD$41,000 every month for a months’ to access Belzutifan. Now that I got a US Visa and live equality between Sydney and LA, I am accessing the medication at no cost.
Here’s the result of my CT Abdomen and Pelvis with Contrast for August 19, 2022 before taking Belzutifan:
My kidney had complex cystic lesion, which was 14mm x 14mm in axial cross-section. It size was the same during my previous CT scan. The solid lesions in various regions increased in size:
– From 8mm x 8mm, the anterior interpolar region grew to 15mm x 15 mm
– From 8mm x 8mm, the interpolar region increased to 12 mm x 13 mm
– From 13mm x 11mm, the anterior aspect of my lower pole became 15 mm x 13 mm.
11 months on Belzutifan 3 pills per day, did wonders for my remaining half kidney, the evident shows in my CT scans in August 29, 2023:
– Complex cystic lesion, lateral posterior aspect of the interpolar region at 13mm x 11mm, previously 14mm x 14mm
– Solid lesion, anterior interpolar region at 20mm x 17mm, previously at 15mm x 15mm
– Solid lesion, medial interpolar region at 12mm x 13mm, which was the same in my previous scan
– Solid lesion, within the anterior aspect of the lower pole that measures 13mm x 11mm, which was previously 15mm x 13mm.
In January 12, 2024, taking 2 pills per day, my CT scan results showed that my cysts are generally stable:
– The lateral posterior aspect of my interpolar region is down to 10mm x 10mm previously 13 mm x 11 mm.
– The anterior interpolar region is a bit smaller at 20mm x 16mm previously 20 mm x 17 mm
– The medial interpolar region decreased to 14 x 11mm previously 13 x 12 mm
– The anterior aspect of the lower pole measured 13 mm x 11 mm, previously 15 mm x 13 mm
– The posterior interpolar region and the posterior lower pole region both remained unchanged at 10mm x 7mm and at 8mm x 6mm, respectively
Thanks to this medication, I might be able to live out a normal life expectancy or at least close to it.
I hope that Belzutifan will be easily accessible in Australia soon because if it does not, it would mean that eventually, my family would have to permanently live in America so that my son Billy, who also has VHL, could take this medication as well when he would need it.
