Treatment Number 4

This should really be titled “Treatment Number 4…. Not!” as the treatment didn’t happen.

Barbara and I went up to London as usual by train, I was feeling a bit crap and was suffering from a hot sweat.

I wore my TFL “Offer me your seat” badge for the first time and it worked, 2 people offered me a seat which I was pleased to take. I was pleased to see that there were people out there who were so kind.

We arrived at the hospital just before 8 am and met with Danny the research nurse who gave me a blood form and some extra vials for blood there need for the trial.

Then it was off to the blood department where I was the first in the queue. Helen took my blood and did a good job too, a total of 10 vials were taken along with the trial blood.

Then back upstairs and back to Danny who took my blood pressure etc.

And then it was time to sit and wait for the doctor.

08.50 came and went and eventually we went in about 09.15.

Dr Linch gave me an examination and asked me how I had been and what side effects I had experienced.

We spent about 20 minutes talking through things.

We also chatted about the scans I had done on the 30th and he said they looked OK. He said it is difficult to see any improvement with the bone scan as the bone activity would look the same if it was getting better, he could say it wasn’t getting worse which is good news.

The CT scan was a different story and showed that I had a small amount of fluid around my lungs, I believe he called it pericardial fluid but I need to wait for the full post clinic letter to come through to get the proper terms. However because of the fluid he asked about my breathing and whether I was getting breathless or having difficulty breathing, which I am not.

Also on the downside my PSA had risen to 14 from 11 a couple of weeks ago. He could not explain why this had gone up but did say that they didn’t really expect to start seeing improvements until after week 12 and while we are at 12 weeks since treatment started they have been delays in treatment. Hopefully next time we will start seeing imprements.

It was then agreed that we would go ahead with treatment 4 and off we went. Barbara and I headed to the main building and had breakfast, picked up a sandwich for lunch and then headed to the treatment suite where we would settle down and wait for my treatment.

Confusion started as soon as we arrived at the treatment suite, we were early but people were saying my treatment had been postponed by the doctor yet we had only seen him 45 minutes ago and it was all go for treatment.

After some investigation it looked like my blood results had come in and one of the markers was high and so it was recommended that I go down clinic and find out what had happened.

Back at clinic we bumped into Danny who said Dr Linch wanted to see me and just then Dr Linch arrived.

We then had another chat with Dr Linch who explained that one of my Liver enzyme markers (AST) was 7x higher than it should be and this could indicate minor liver damage and because of this treatment could not go ahead and this problem needed to be resolved.

I was prescribed some steroids, Prednisolone to be taken for 5 days to sort the liver out and then come back next week for another blood test and if its OK then treatment would be done then.

Dr Linch did say that it looked the immunotherapy was working and it seemed that the T Cells were being very active and they maybe targeting a minor infection in the liver.

Immunotherapy works on the T Cells ( A type of white blood cell that works as part of the immune system) and turns them into cancer destroying troopers.

But what these cells aren’t good at is target recognition and so they have been running amok destroying cancer cells and also having a go at my liver amongst other things.

So the plan now is to sort the liver out and go back next week and all being good go ahead with Treatment 4.

It is a bit of a roller-coaster ride with all this treatment on/treatment off, you get emotionally prepared for treatment and then it is cancelled. I think it is also made worse as the side effects have been bad and it takes some resolve to go on with treatment but if I am honest I am pleased to have another weeks break. I have been feeling rough for a few weeks now and just starting to feel myself so at least the delay gives me time to have some quality time and to build my strength more for the next treatment.

Treatment Number 1

Today is the big day and I am feeling a little nervous. Partly because I hoping the treatment will really be a miracle and also because I had a bad reaction to the first two chemotherapy treatment and I worried the same would happen again.

It was going to be a busy day as I needed to see the Trial Nurse and then the Oncologist before I could be signed off for the treatment. I was due to see the oncologist at 11.10 and then booked in for treatment at 12.30.

We arrived at the Macmillan Cancer Centre in a timely fashion and made our way upstairs and headed to see Emily the Trial Nurse. She sent me off to get some blood samples and I took my own tubes with me.

That done it was time to see the Oncologist or should have been!!

We waited 2 hours to see him before being called in where I was examined and given the all clear for the treatment. I was told to come back in a week for a checkup so I booked an appointment for an earlier time in the hope that the waiting time would be less.

On the downside I learnt that my PSA was now 10.5.

We made our way up to the second floor where the treatment room is and checked in. We were directed to the nurse in charge of the section where I would be looked after.

She said there would be about a two hour wait while the pharmacy makes up the drugs so we headed out for some lunch.

We were back after an hour and decided.

Good news, all go for Neptunes

After all my worries I received some good news today and that is that I am eligible for the Neptunes Trial.

They have screened 14 people so far and I am only the second to be accepted onto the trial. A rather dubious claim to fame!

So this is going to be a busy couple of weeks as I need to have loads of tests done.

I have already had a further blood test today and an ECG.

Still to come are.

CT and MRI scans

Bone scan

Transperineal Biopsy

And more blood tests.

So I am back to UCLH in two weeks.

Good job I am on holiday for a week before then.

I am to stop taking the Enzalutimide and Metformin but keep going with Hormone Treatment.

I am also going to keep taking the Finesteride, Tamsulosin and Solifinicin.

Had a good chat with Dr Mark Linch about the trial and also met the trial nurse who will be helping with the trial. His name is Danny.

On the downside my PSA had risen slightly to 9.24.

I had my blood pressure done today which was on first reading 157/94 Which is a little high and then 138/93 on the second.

I had 99% oxygen saturation

A pulse of 71

And my temp was 36.4

My weight fully clothed was 109.1.

Both Barbara and I are very pleased that I am IMS positive and on the trial. I will write more about what the trial involves in due course and will keep updating as we go throughout the trial.

Another blood test.

Time for another blood test.

Fingers crossed it will be straight forward as the blood test form came from UCLH.

When I arrived I got my ticket, number 73 and the counter was on 46!

Good job I am used to waiting although the wait was made better as Olivia was waiting for a blood test as well with Kaye so I had someone to talk to for a while.

This blood test was to check my PSA, I hope it has not gone up too much.

Well the good news is all went well with the blood test and the nurse found a vein quickly and had the needle in before I could notice.