Who am I:

I have been thinking about creating a blog to add some personal comments about this lifelong journey I have with paraganglioma. It is weird for me to be writing about my experience as it is such a personal journey, but over the years I have been helped by the blogs of others. Hopefully, this blog will help at least one person to cope with their journey.

So, to start off I will introduce myself. I am a 49 year old Aussie Mum. I "celebrated" 30 years of living with Paragangliomas caused by an SDHB mutation last August. During those 30 years there have been many ups and downs. Thankfully, the good times outweigh the bad, so I consider myself lucky in more ways than one. Having the SDHB genetic mutation means that the larger my tumours grow, the more chance there is that they will metastasise into my lymph nodes, bones, lungs and other organs. I currently have a tumour in my neck, one in my abdomen and a cluster "too numerous to count" in my pelvis. The largest one is 36mm, growing (roughly) at a rate of 3mm per year.

At this stage there is no cure for my paras. I have had 10 lots of surgery and radiation and the specialists all agree that more surgery is not an option. Peptide receptor radionuclide therapy using lutetium177 may be an option later down the track, but it is not as effective for slow growing tumours. At the moment the potential risks outweigh the possible benefits.

I get six monthly scans in Melbourne. These scans are a full body ("eyes to thighs") MRI and a full body Gallium 68 PET scan. These are alternated so there is only 6 months between scans. Occasionally they throw in an FDG PET scan, for an alternate point of view. I also have annual blood tests that look for excesses of adrenaline, noradrenaline and dopamine.