Chemo (Carboplatin 1) 23rd July 2021

Well the big day has arrived and I am back at UCLH for the start of a new chemotherapy treatment for me, Carboplatin.

But before I go into that I thought I would just recap on my treatments so far, once again starting with chemotherapy.

Having been diagnosed in Nov 2016 I was quickly started on Hormone Therapy followed by…

Jan 2017 6 x Docetaxel

Dec 2017 Enzalutamide

July 2018 Immunotherapy Trial

Jan 2019 Cabazitaxel x 4

Aug 19 Lutetium x 8

And while these are the main treatments I have also had various parts of my body zapped with radiation including my spine, shoulder and sternum.

So overall it has been a bit of a rollercoaster of different treatments and emotions as I start each one and then come to the end of treatment or it is stopped because it was not working as was the case with Immunotherapy, Enzalutamide and Cabazitaxel.

And so given that the Lutetium also stopped working I have great hopes for Carboplatin although I  also have a great deal of apprehension but with all these things you have to go into it with a great deal of faith and hope and a positive attitude.

I do think that my positive attitude has really helped get me through a lot of this and while it is hard and some mornings I have to look in the mirror and force myself to smile, I do think it works.  The mind can do wonders and help keep you strong.

I have also done as much as possible to stay ‘fighting fit’ and am currently doing a virtual walk along Route 66 but that’s a story for another day.

So the big day arrived and I was a little late for my appointment due to traffic delays.  And guess what, my blood pressure was a little high, so a few moments of relaxing and breathing and I was retested and it was fine.  I am always amazed at how blood pressure can fluctuate and change so quickly.

Checks done and I was met by the nurse who would be looking after me and he was someone who had looked after me before and we both recognised each other.

He got me seated in the chair which would be mine for the next hour or so while the treatment was administered.

Then quickly and efficiently, he fitted a cannula and got me hooked up to a drip, I would be having fluids with extra steroids and  other things prior to the Carboplatin going in.

The nurse also organised a sandwich for me which I was ready for by this time and I think helped fortify me for the coming treatment.  I order a chicken sandwich and vanilla ice cream, yum!

Lunch

And before I knew it the Carboplatin was flowing down the tube and into my arm, no reaction from me so all good!

It only took about 30 minutes for the infusion and then I was done, the cannula was being removed, I closed my book and packed up ready to go.

I was feeling fine, although a little tired and was looking forward to getting home.  Only time would tell if I would get any side effects but for now I was feeling good!

Lutetium Treatment 3

Back home after a long day at the hospital, well The London Clinic to be precise.

The day started early and we had chosen to get a taxi to the hospital as I couldn’t face the train journey in rush hour with the brace on although with the power of hindsight it may have been the better option as the taxi took nearly two hours to get to the hospital with all the rush hour traffic.

So eventually we arrived and checked in, we grabbed a quick coffee before we were shown to my room.

And then as usual nurses and other people started to arrive to do blood tests, fit the cannula, and so on.  For me the main thing was getting my breakfast order in as I knew they were not the quickest and by now I was feeling peckish!

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At about 11 am my Radiation Oncologist arrived and she asked me how I was and so we chatted for about 15 minutes as we caught up on my back and other things since the last time I had seen her.  She then asked the duty doctor to give me a quick check over.

The duty doctor listened to my chest and breathing and then gave me a quick check-over.

All good, or so I thought.

My Radiation Oncologist returned and said that I had an irregular heart beat but we would still go ahead with treatment!

Well if my heart wasn’t beating fast before it was now!

A nurse appeared with an ECG machine and I was hooked up up to it and a paper print out spewed forth from the machine.  My Radiation Oncologist looked at it and said all looked good, there was a minor irregularity but nothing to be concerned about and she would add it to my notes.

By now I was hooked up to the drip and a saline solution was slowly dripping into me.

And then the physicist arrived carrying a small white box and while it was small you could tell by the way he handle it that it was heavy.  It was heavy as it was lead lined to protect everyone from what was inside. And what was inside was my small syringe of Lutetium 177.

The photograph below shows a picture of the drip with a white cylinder attached to it, this is partially filled with saline solution and then the Lutetium is added to the saline.  The cylinder is then topped up with saline.

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Once everything is ready then I was switched over to the second drip with the Lutetium and it started to flow down the tube and into my veins.  The actual infusion of the Lutetium doesn’t take long at all.

For those that like a little detail I received radionuclide therapy and the isotope was Lutetium 177 with an activity of 7400 MBq.  The measured exposure rate was 14 microSieverts per hour at 1 metre.  The effective half-life of the isotope with in the patient is 3 days.

While I think I understand all of the previous paragraph I will do a little reading up on this so I fully understand what has been written.

And then it was all over.

It was barely midday and the treatment part of the day was over, now it was time to let the treatment settle into my body and make sure there were no immediate side effects.  It was also time to let the radiation decay a little so I could join the general population and make my way home.  I was told I would be able to leave around 3.30.

To me that meant nap time!

Nap time included a number of interruptions as different people checked I was OK, and an interruption that I didn’t mind which was lunch which consisted of an Irish Stew that I had chosen early.  Because of the radiation all of my food and drinks is served in disposable containers and with disposable cutlery as regular crockery and cutlery would become radioactive over time.

So while the Irish Stew didn’t look too tasty served in a plastic container it was actually very nice.

The day ended on a little high-note as a copy of the results from the blood test I had in the morning were given to me.  And the good news was that my PSA was now 485 down from 655 a week earlier.

So to me this looks like very good news and is a good indication that the Lutetium was working.  My Radiation Oncologist had said that I will have a PET scan after treatment 4 and then do a full review of where we are in terms of my cancer and what needs to be done next.  We may roll straight into treatments 5 & 6 or delay them a little.

My own inclination at this time is to complete the course of 6 treatments so that the cancer gets a really good dose of Lutetium/treatment and gets beaten into submission.  I must ask if a further couple of treatments could be done in the future if the PSA starts to rise again and the cancer begins to become active again.

I left the hospital on a high-note with my new PSA of 485 and we made our way home.

We were given a set of rules to follow for the next few days while my radioactivity is high and these are mostly to protect my wife from radiation, these include things like not sleeping in the same bed for 3 days and avoiding prolonged close contact with other people for 3 days.  Close contact with babies and pregnant women was to be avoided for 7 days.

It had been a long day by the time we got home and I was ready for a rest!

 

 

 

Meanwhile in St Petersburg….

Did I mention that we were doing a Baltic Cruise?

Well on the 8th of September we arrived in St Petersburg and if anything was going to happen around radiation detection then it would be here.

We had a number of excursions booked while we were here, the first at 7am in the morning.

St Petersburg was also the only place on the cruise where we would have to go through an immigration process.

We disembarked early in the morning along with many others and queued to go through immigration.

Our passports and entry cards were checked and stamped by unsmiling immigration officials.

We then approached an area where the x-ray machines and personnel scanners were. I also noted there was some metal boxes either side of the door we were about to go through.

We went through as a small group and sure enough an alarm started to sound.

People looked at each other, Barbara and I looked at each other, we both guessed what had set this alarm off and it was probably me!

Security staff in uniform came over and made us pass through the door in single file so they could identify the perpetrator or person setting off the alarm.

Soon I was isolated and taken to one side. Initially I was with one guard in uniform who was young looking and of low rank, he was soon joined by someone older who looked of higher rank, more badges and emblems on the shoulders. And finally a third person turned up who could have been a general!

They all spoke to me in their best Russian.

We were then joined by more staff in civilian clothing, think KGB or their modern equivalent.

But now things could progress as a little English was introduced into the conversation.

Fortunately I had a letter from The London Clinic explaining about the treatment and the radiation I had recieved which I produced and was promptly read by everyone.

My letter was then taken away to be photocopied.

The mood was lifting and becoming less tense, the people in uniform went away to do other things.

My paper work was returned and I was asked to complete a form. The form was of course in Russian!

Our young KGB assistant helped me complete the form and I had to trust that I was not confessing to some crime or spying🕵️‍♂️!

Paperwork done we were allowed to proceed on our excusion to Catherines Palace.

Of course on return to the ship we had to go through immigration again and yes I set the alarm off once more.

There was a response from the security staff but once they recognised me they waved me through.

We had a few excursions that day and each time had to go through the immigration process. It did get more relaxed and soon we were being met with smiles and being waved through. I think once they knew what was going on they were happy to see us visiting their city.

We had hired a private car for our second trip and went to see the Cruiser Aurora.

The Artillery Museum with all it’s Tanks and Armoured Vehicles.

The Peter and Paul Fort.

And Church of the Spilled Blood.

And then a night river cruise.

The following day was another early start as we were going to Peterhof or the Palace of Peter The Great.

St Petersburg was a great place to visit and we had only scratched the surface.

It was a tiring couple of days for me but well worth it.

I would highly recommend it, radiation alarms and all!

Blood Test

It feels like ages since I have had anything to write about and in fact there has been lots to write about but as I have been on a two week cruise I have a little catching up to do and so will be doing a few retrospective posts in due course.

But for now it’s back to live blogging.

I am sat on a train heading to Tottenham Hale and onwards to Warren Street where I am going to UCLH for a blood test.

I have an Oncology Outpatients appointment tomorrow and want to have the blood test today so they have plenty of time to get the results in.

My last PSA was 1238 which is very high and almost double what it was a month earlier.

I have also had the first Lutetium treatment since then and so it will be interesting to see if it has an impact on my PSA.

Fingers crossed!

I am doing this journey three times this week, today and tomorrow and then again on Thursday as I have a checkup at the London Clinic.

So a fairly busy week ahead.

The blood test went fine and I was in and out in about 15 minutes.

Lets see what tomorrow brings…………

A Busy Tuesday

I awoke with a lot of pain in my legs this morning, I had been suffering for a couple of days and it was getting worse.

So Barbara booked me an appointment to see the GP and off I went.

I got a taxi to the doctors because I was having trouble walking, the doctors clinic was upstairs in the surgery but they were kind enough to find a room downstairs for him to see me.

It was long before he turned up and I was in.  He asked lots of questions and didn’t do a physical examination.

After the questions he concluded that it might be Polymyalgia, or polymyalgia rheumatica.  This is a condition that causes pain, stiffness and inflammation in the muscles around the shoulders, neck and hips and so I could see why he would think that.

He also said another blood test was needed to check for inflammation markers.

He prescribed Prednisolone Steroids to treat the Polymyalgia, the same steroids I had spent the last 6 weeks being weaned off!

So I went to the chemist and picked up my prescription but decided to double check with the oncology team to see if they were OK with me going back on Prednisolone.

Today I also had an appointment at UCLH for a PSMA PET SCAN, to check to see if I was producing enough PSMA (Prostate Specific Membrane Antigen) to allow me to take part in the Vision Trial, the trial which uses Lutetium 117 to kill the cancer cells by seeking them out via the PSMA.

And so it wasn’t long before I was off to UCLH on the train carrying a walking stick to help me along the way.  Barbara was coming with me which would be a great help given my condition.

We arrived at UCLH slightly early but was soon seen by the team in Nuclear Medicine.

The procedure was going to be slightly different to the procedure for a bone scan in that they keep you in for an hour after administering the injection because it is a fairly high dose but with a short life.

So I was fitted with a cannula and before long I was injected with a radioactive source called Galium 68.

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I was lying on a bed and before long I had nodded of.

I was awaken for the scan, I had to empty my bladder and then I was in.

For the scan I had to lie with my arms crossed above my head!

Well that’s OK I hear you say, and it is, for about 10 minutes and then after that it become very uncomfortable moving in painful as time goes on.

So I was very pleased when the 30 minutes of the scan were up and I could bring my arms down to a normal position, I could feel the blood running back into them!!

I was asked to sit outside for a few minutes to recover while they checked the scan.

I asked if the scan showed I had lots of PSMA and like all radiographer they said they could not say and I will have to wait for the results.  Why do they do this????

Although she did smile and say I could go home and relax which I took as code for yes it’s OK so fingers crossed!!

So not I have to wait for my oncology outpatients appointment to find out the result.

Back soon;-)

Another Bone Scan

I have lost count of how many Bone Scans I have had over the last 2 and a half years, I think this is number 12!

Just arrived at Nuclear Medicine and sitting waiting for the injection before my 3 hour wait for the scan.

Today is made a bit more complicated as I am due a CT Scan after the Bone Scan, and so it could be a long day.

Although I should get used to it as I am back here on Tuesday for a PSMA PET Scan, which will be a first for me and is part of the Vision Trial.

Well I was called in on time today and soon had a cannula fitted and the radioactive injection was done.

I asked if they could leave the cannula in as I had a CT scan and they were happy with that. They also had a quick look at the scan roster and suggested I try and get the CT scan done now.

So I popped down to the 2nd floor and they said I could have the scan now, result 😁.

So I quickly got changed into a rather fetching gown!

The big bandage on my arm was to protect the cannula.

I was soon lying on the scanner bed and the radiographer started to prep the cannula for connection to the Contrast Fluid.

I felt a warm trickle down my arm, it was blood!

One of the valves in the cannula was in the wrong position and blood was coming out. I called the radiographer and she quickly closed the valve and cleaned my arm.

And relax!

In no time the scan was done and I was getting off the scanner bed. I asked if they would take the cannula out and they said no so they wrapped it once more.

As I started to get dressed again I felt that warm trickle once more and saw blood running down my arm.

I got the radiographers attention and they adjusted the cannula once more and redressed it.

Then I finished getting dressed and headed straight back to Nuclear Medicine and asked them to take the cannula out, which they quickly did.

After all I didn’t want to be eating lunch with blood trickling down my arm!

So now I have three hours to wait, what to get for lunch?

So the hours passed and I was back at Nuclear Medicine for my 3pm scan. I didn’t wait long and I was asked to empty my bladder and take a seat outside the room which held the scanner.

While I was waiting one of the staff went to a machine on the wall which looked like a hand dryer with a display screen on it and held her hands underneath it.

She started to look concerned and tried again.

The nurse who was with me said that it wouldn’t work as I was radioactive, pointing at me.

I was about 4 feet from the machine and it would seem that I was producing enough radiation to effect the machine which is some sort of device for measuring radiation on staff hands.

Something like a Geiger Counter.

I was now intrigued but got called in for my bone scan which took about 20 minutes and the results should be with my oncologist for my Outpatients Appointment on Wednesday.

And then I was free to go.

But with my curiousity peaked I went to the Geiger Counter and stood in front of it.

The reading rose to those in the image.

I then put my hands under the device and got the following results.

cps is Counts Per Second and is a way of measuring ionizing radiation.

While I had had only a small amount of radiation it was clearly higher than the norm but what surprised me is how far it radiated out from me, I expected it to be very localised.

The radiation in me will decay fairly quickly but I do wonder what the cumulative effect is given that I have now had about 12 bone scans and am having a PET Scan on Tuesday?

This will hopefully be followed up by 6 radioactive treatments as part of the Vision Trial.

I will have to try and wander past this Geiger Counter in future weeks and see how it reacts!

But the big questions is…….

Do I glow in the dark😉

Oncology Outpatients

Back at UCLH this morning for an Outpatients appointment. I am hoping to sign the Consent Form for the Vision Trial and for another trial using Niraparib.

I have read through both Patient Information Sheets and am happy to sign the consent forms.

So waited about 20 minutes for my appointment and was seen by a Spanish Doctor with a very long name who we will call Blanca.

She went through the information sheets for both the Vision Trial and the other trial which we now know is called Galahad.We were also seen by Professor Attard as he had to sign off on the Vision Trial.

The Vision Trial is the one I am most interested in as I feel it may offer the best results. The Galahad trial is a bit of a long shot as I was checked for this as part of the Neptunes Trial last year and I didn’t meet the requirements for the trial then, last time they used a tissue sample from a biopsy to check and this time they are checking the plasma. They say there is a slight chance I might qualify this way but its a long shot!

I need to get my head around the Galahad Trial, it’s all to do with PARP Inhibitors (which sounds like something from Star Wars!) so please excuse me being a little vague about it.

As I am back in trial mode the appointment was followed by blood tests, urine sample, blood pressure, height and weight etc.

I also need to go for an ECG which is normally quick and easy.

And Three Days By The Sea

Following on from our stay at Grayshott Health Spa we then moved on to Wells next the Sea for a break by the sea and time with Teddy.

And despite his glum look Teddy loves the beach and cooling himself in the sea.

Teddy really enjoyed the beach and spent his time running around and building sandcastles 😉

Following on from our time at the spa this was also therapeutic and just what we needed, lots of fresh air and a relaxing time.

Four Days in a Health Spa

After being told that Treatment 4 would be cancelled we had some decisions to make about our holiday.

We had flights booked to the South of France but given the way I was feeling and the risk of complications if I were to become ill while abroad we decided not to go to France and instead we would go to a Health Spa.

We were lucky enough to be able to book 4 nights in the Grayshott Health Spa in Surrey.

And so on Sunday 23rd September we headed off to Surrey.

The Spa looked lovely and was set in lovely grounds.

It had rained all the way there but as we arrived the sun came out.

That afternoon we both saw a Health Consultant, had a session of yoga and a dip in the pool. What a great start to our stay.

Over the next few days we had lots of treatments and took part in a number of activities and talks. We are healthy for our time there and had lots of time for relaxing.

Our treatments included.

Classic Massage

Hot Stones Massage

Be Nurtured Massage

De stress Massage

Reflexology

Acupuncture

Personal Trainer 1-2-1

Classic Facial

We also took part in some gym classes.

Stretch and Mobilise

Relax and Unwind

Yoga

Tai Chi

And we went to talks on

Anti-oxidants and Superfoods

Controlling the Dieting Refex

The food was fantastic and designed to be healthy, I had thought it would be all vegetarian but it wasn’t.

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Our stay at Grayshott was fantastic and definitely what I needed. I left feeling relaxed and recharged.