Neptunes No More

Not one of my best days today, I was officially taken off the Immunotherapy Trial (Neptunes) as I was showing signs of disease progression.

We arrived at the hospital at 8am and went straight for a blood test which was surprisingly quick and easy.

We then went upstairs to see Danny the trial nurse and he said that he did not need to see me, strange!

We waited a short while and then we were collected by Dr Flanagan who had a pensive look on her face.

We then made our way into one of the consulting rooms, she asked how I was feeling and I said fine, she asked me to recap on the eye situation (Vitreous Detachment).

She then told me that I was to be taken off the trial as I showed signs of disease progression on the bone scans I had on 4th Jan.

The bone scan showed 4 new lesions.

Left 4th rib

Right 7th rib

Right Shoulder

Lower spine

Below is an image(not great quality). The dark patches show cancerous lesions apart from the patch between my hips which is my bladder.

bone scan 4th jan 2019

This was shattering news to me that there had been so much progression although she did not know the size of the lesions.

She asked me if I had had a chance to look at the different treatment options she had mentioned the previous week.

We then had a discussion about each of them but I think they had already made their decision.

We talked about the following.



Radium 223

Lutetium Trail

and the side effects for all of these but the upshot was they wanted to put me on Cabazitaxel which is a chemotherapy.

The challenge was that we have booked a holiday late Feb/early March and no one wanted to wait until march before starting chemo so we came to a compromise that I would have one treatment next week which should give time for me to recover from any side effects prior to going on holiday whilst also starting to work on the cancer.

So it’s chemo next Tuesday followed by another bone scan in 4 weeks.

So while I am happy that we now have a treatment plan I am not happy to be in this situation, I had great hopes for the Neptunes trial and really hoped that immunotherapy was the way forward for me. I feel I have gone from potential cure to just trying to hold back cancer progression.

So I need to pull myself together and get on with things, I need to turn that frown upside down.

It’s hard but I will get there.

2 thoughts on “Neptunes No More”

  1. Oh Phillip, such hard news to hear after all your hopes for the trial.
    However – I am testament to the fact that chemo can work wonders too – and hopefully it will. Let me know if you want a chat.
    Hugs Jxx

    Liked by 1 person

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