NGPDT | Cancer Treatment Story

Finding out about NGPDT & Researching

My husband, Peter, found out about NGPDT (Next Generation Photodynamic Therapy) online. He looked at the NGPDT website. He read blogs from patients and their family members. He subscribed to and accessed medical journals. He provided a filter for information for me. I was obviously very emotional and tired and it was difficult to take in a lot of information. Peter would summarise and show me things he’d looked at that resonated most with him.

Basically NGPDT is a light based treatment. It involves drinking a photosensitiser which is derived from chlorophyll (not harmful and actually good for you). This absorbs through the body, specifically to the cancer cells. Then infrared light is applied, which produces oxygen at the cancer cells and kills the cancer.

It has been around for years for surface conditions like skin cancers. However its application for deeper tissue is relatively new (approx. 3-4 years).

Making the Decision

It was really challenging to find information that was specific to me. I struggled with the lack of evidence and data. I wanted to read about studies that had involved people with my specific cancer (cervical with lymph metastases). This data did not exist. I had to look at information that might give an indication of its potential success for me.

It was tough for Peter and I. He was convinced before me and needed to be patient with me while I was still deciding. If it wasn’t for him, I would now have gone through early menopause and would be infertile. I made the decision, but he played an important role.

The people at NGPDT were limited in the information they could provide to me too. They are not allowed to use the word ‘cure’ and instead talk about positive success rates. Most people who have the treatment have already tried other treatments including chemo. Their immunity has been depleted and this makes it harder for their bodies to fight.

NGPDT is not approved in Australia. It has not been through the required trials. However it is available in China where the medical world is less regulated.

The theory made sense to me. I had to decide if I had time to try NGPDT to see if it would work, but not risk delaying other treatment and it being detrimental to my health. I developed a project plan to see the timing. I knew if I had the treatment, I would need to wait two months afterwards to see if it worked. This is because initially the treatment causes inflammation, which then goes away with the cancer cells. I planned to have one or two rounds of IVF to remove eggs, keeping my options open for surrogacy if I needed radiotherapy and chemo. At one stage I had four versions of the project plan, exploring different dates and order of events.

Having NGPDT treatment in China is fee for service / user pays. It costs nearly AUS $20,000 per round of treatment. Normal protocol involves 3 treatment rounds, however based on my level of cancer after my surgery, I thought that if it didn’t work after two rounds it probably wasn’t right for me. I tried not to make the decision based on financials, but obviously it was on my mind. We worked out that we could move things around and manage the expense.

I reached a point at which if I did not give NGPDT a go, I would have always wondered ‘what if’? So I decided to try it!

Treatment Outline and Dates

Here’s a list of what the treatment involved on each day of my two rounds. You can click on the links to see my diary reflections for each day.

Treatment Diary

Check out my diary I kept each day.