So I was up bright and early today for my ride into London and my appointment at the London Clinic near Regents Park. The roads did seemed a little bit busier to me with more traffic on the roads and definitely more pedestrians in London although the journey was much quicker than normal the city did feel busier.
I arrived at the hospital just before 9 a.m. and went inside to see that all the Covid precautions were still in place, with hand sanitation stations near the door and screens around the reception staff. I was soon checked in and directed upstairs to my room although before heading up I headed off to the coffee shop for a flat white, a nice treat for me to have and a decent coffee made by someone else.
I got to my room and settled in and soon the nurses turned up to do my observations, my blood pressure, temperature and weight.
Another nurse came in and fitted the cannula and she also took some blood for the blood test. Things were going quick this morning as she was followed by the catering lady who took my breakfast order.
And then it was time for something new, it was time for the Covid 19 Test. The nurse that was doing it was not a fully qualified nurse but a nursing assistant although I was happy for that person to do the test as they need to get the practice in.
The test consists of putting in a swab up and to the back of your nose and another swab into the back of your throat, not a very pleasant experience but very necessary. Hopefully the results will be back shortly and will tell whether I have coronavirus or not.
I was then informed that treatment would not start until after both the blood test and the Covid test came back from the lab which takes about 90 minutes. I kind of understand waiting for the blood test although I did have one only a week ago. But the Covid test seems slightly out of sequence, surely part of the reason for doing that is to protect staff and I have already seen a number of those and even more if you include reception staff and those at the coffee shop?
Only one thing for it, I will have a snooze 💤💤!
And then suddenly everything changed and it was all systems go, the nurse was in to hook me up to the drip and start introducing the saline solution, I also had add a visit from the radiography consultant who asked me a few questions before saying we could go ahead with the treatment.
Treatment only takes about 30-minutes but today it took three people although one of them was just here to see what happened and you can see a picture of the trolley with all the equipment on it it although they were visiting another patient after me.
Once the treatment was over I had a chat with the consultant about future steps. The feeling is is that the next step is to have a PSMA PET scan in a couple of months time to see how things are inside. Because the PSA is continuing to drop she is confident that the treatment is working well but the scan will help to clarify that so we just need to wait and do it at the right time for this latest treatment to have had time to take effect.
She is effectively handing me back to UCLH who will continue to manage my treatment going forward and make decisions as to what the further treatment will be. Typically lutetium treatment consists of six treatments and this was my 6th treatment. Although in some countries and institutions further treatments have been given but they may be held back until they are needed .
So now it’s a bit of a waiting game while we just let time pass, they will continue to do blood tests and monitor my PSA. I am due to have my next oncology outpatients appointment in about 6 weeks time and I guess by then we will have had another blood test and know where the PSA is at.
One piece of good news from today is that the Covid-19 test came back negative so I know that today I do not have Coronavirus which is nice to know.
So is this my last visit to the London Clinic in the short-term in that I will not be back here for at least a couple of months. I suspect I will be back for treatments 7 and 8 at somepoint.
That said I need to have a good chat with my consultant at UCLH and discuss what other possible treatments may be available.
Today I had my oncology outpatients appointment via a telephone call with the same doctor that I spoke to last month. The appointment was quick and efficient and to me it seems like a good way to do these more routine type of appointments and is something I hope they continue to do going forward.
The doctor was pleased with my PSA result as was I, 88 is a good number to be at and a good leap down from last month’s figure of 144.
We also discussed whether I was Borderline anaemic and he felt that there was nothing to worry about and that no treatment was needed as it was very borderline. I accept what he says but I will modify my diet to include more iron rich foods, I may also start to take iron supplements to give me that extra boost.
We then then went on to discuss whether I should have Zoledronic acid ( this is to strenthen my bones) at the start of July and he said I should go ahead with that appointment so that will be a trip to UCLH for that treatment. I will need to consider how I get there.
So with the appointment coming to an end and I was given the all clear to go ahead with the Lutetium treatment on Friday. I did ask a cheeky question as to whether the treatment was available on the NHS yet but the answer came back that it wasn’t yet available. So going forward I will need to continue with the London Clinic.
So being given the go ahead I am looking forward to my day trip to London and seeing a little more than just the view from the house and the garden, and of course it will be a little adventure 😁👍.
Well today as been full of excitement, well not really that exciting but exciting for me.
I have been out of the house today and visited the GP in Thorley for my three monthly Hormone Injection.
It was good to get out and see a small part of the world. It was also good to get behind the wheel of the car and do a bit of driving. They have resurfaced the main road through the village which we had seen from our house but hadn’t driven down, looks like they have done a good job and now all the potholes have gone.
I arrived at the Surgery with my mask and gloves on and like last time I needed to ring the doorbell to be let in.
I actually feel this system works much better as there was no waiting around and I was straight in to see the nurse. Although I guess less people are going to the surgery and that is why it is more efficient but I am sure there are lessons to be learnt!
The nurse was very good as well as quick and efficient, the injection is done with a big needle and I never felt a thing which is always a good result.
And before I knew it I was off home, I made the most of the drive and went through town to have a look around. The roads were quiet and driving was a pleasure but I can’t see that lasting!
Soon I was home and looking forward to my next adventure which is tomorrow when I go out for a blood test!
Well here I am again back at the London Clinic for treatment Number 5 of Lutetium which is of course the second attempt after the quality control issues of last time.
Like last time I’m I got a car into London to reduce the risk of picking up the virus on the train and the tube. And once again the journey only took about an hour as the roads were pretty clear although there did seem to be a larger volume of traffic on the roads.
I arrived at the clinic and visited the hand sanitation unit and then checked in. And then as a matter of priority I got myself a coffee.
Soon I was in my room had a cannula fitted and blood taken. I found out that the treatment was going to be early and things would be done at slightly quicker pace than normal to reduce my time at the hospital.
So come 11 o,clock I was being injected with the Lutetium and placed behind the radioactive screens. Where they normally keep me for a number of hours to review the radiation Decay they are going to let me go as soon as possible and so I should be leaving the clinic at about 1 p.m.
And I am pleased to say that everything went to plan and I was home by 2 pm.
As well as being socially isolated Barbara and I, and Teddy, need to stay 2 metres apart for the next 5 days so that they do not get exposed to the radiation. So it’s separate bedrooms and sitting at either end of the sofa.
I had a phone call today from the Radiography Consultant about my PSA results following on the blood test that was done on the 3rd.
And so the good news is that my PSA say is now at 169 which is extremely good after a high of 1,584 a few months ago go. She also said that she had seen the scan results from the PSMA PET scan and that that seems to indicate that a lot of the tumors had reduced in size by as much as half, which all seems to indicate that the Lutetium treatment is working well. And so really I need to continue with the treatment to try and keep the positive momentum going and keep pressure on the tumors and the PSA to get them down further
The bad news is that the treatment which was scheduled for the 9th has now been postponed until the 17th which is about 2 weeks away, again a little bit disappointing but better to have the right treatment than something a bit wrong.
The reason given for the delay was that due to staff shortages at the facility that makes the Lutetium, they could not provide enough on the 9th and so I was reserved a treatment for the 17th.
Overall I’m really pleased with how the treatment is going and the positive effect it is having and while there are hiccups along the way at least I am still getting treatment.
Today I headed to London for my 5th Lutetium treatment at the London Clinic. I was doing this treatment on my own for the first time as we thought it better that Barbara didn’t come along and risk exposure.
I had booked a car to take me at my own expense to minimise the risk of going on the train and tube and picking up the Corona Virus.
I was a little excited to be going out, I hadn’t been out of the house for days and it would be good to see the outside world and get a change of scenery. The journey to the clinic was very quick, what normally takes 90 minutes or more took less than an hour.
So I arrived slightly early.
The clinic was clearly taking precautions against the virus and had a hand sanitising station set up just inside the door. There were also guide marks on the floor to help us keep our distance.
I was quickly checked in and was pleased to see that the coffee bar was open and so I ordered myself a flat white. I hadn’t had a coffee from a coffee shop since going into isolation and so I was looking forward to this one.
Soon I was upstairs in my room, not a great view but at least it was a change of scenery.
I settled in and was soon joined by a nurse who did my observations, fitted me with a cannula and took a blood sample for testing. I was also able to order some breakfast and lunch.
As this was treatment number 5 I knew the routine, I would probably get the treatment at about midday and so I made myself comfortable and settled in.
However it was not going to be routine.
My phone rang at about 1030, it was my Radiation Consultant who was phoning to tell me that the Lutetium had failed quality control and that I would not be getting treatment today. It would seem that the two elements of the Lutetium, the radioactive element and the PSMA element (the PSMA element is attracted to the cancer cells which the radioactive element then destroys) had not bonded together correctly and so would not work as it should. The radiation would go around my body and cause damage to cells.
I was disappointed that the treatment had been cancelled after the risk and the cost of getting to the hospital. But better it is postponed than be injected with something that could do more harm than good.
I was soon on the phone to my car driver who would return as soon as he could.
Another quick trip out of London and I was home for lunch. The roads were quiet but I was a little surprised at how many people there were about, walking down the roads and in the parks but I guess they must be key workers snd people who cannot work from home.
So my next treatment is booked for just before Easter, fingers crossed!
Second time in 4 days that I am heading up to London, this time it is for my 4th Lutetium treatment.
The Zoledronic Acid treatment I had on Tuesday went OK but I have been suffering with some side effects. The main thing is I have been feeling very tired and have also been having chills. There is increased pain in my lower back although it could be my kidneys as they are recognised as side effects.
We arrived just after eight and was shown to room three; I feel like this is my room as I am in here every-time I come up.
The nurses were soon in to fit a cannula and take my observations which were all fine.
And then around midday my doctor arrived and we had a quick catch up.
She wanted to hear how I had been and what else had been going on since I last saw her in December.
That done she explained that they were going to differ the process for giving me the Lutetium, mainly because they had a new lead lined box that helped protect the staff from the effects of radiation.
The box had been developed at Guys hospital and they were looking to bring it to the London Clinic and I was the guinea pig. As well as my radio oncologist, there was a physicist and his boss in attendance with a Geiger-counter to check radiation levels and to see how much protection the box gave them.
Inside the green box was syringe pump which could be set so that the lutetium was injected into the drip at a set rate.
Here is a view from above.
You can see a groove in the perspex and in the right side of the box, this is where the tubing would make it’s way outside of the box.
And the picture below shows a tray which holds a syringe with the flushing solution connected to a three way junction. The purple coloured cylinder is what fits over the syringe while it is in transit in a lead box, it looked fairly heavy so I guess it is lead as well.
So overall the process of administering the Lutetium was a little slower as they went through the steps of using the new box but it seemed effective and the physicist with the Geiger-counter kept making happy noises and nodding his head with a smile.
Well they should be well protected in the future.
As for me I was getting the full effect of the radiation and would be in a kind of isolation for the next few days.
I was given a radionuclide isotope Lutetium – 177 with an activity of 7400 MBq and my exposure rate was 18 microSieverts per hour at 1 metre. The isotope has an effective half life of 3 days.
In terms of isolation I was to avoid close contact greater than 30 minutes, which means we keep our distance and sit at either end of the sofa. It also means we sleep in separate beds for 4 days.
And then it was back to waiting, throughout this process Barbara is not allowed in the room and so she went off shopping to console herself. I then had a few hours to wait while the Lutetium worked it’s way around my body.
Come 4 pm I was given the all clear and we headed home. I was feeling fine and was hoping that the Lutetium was doing it’s stuff.
So something new today, same old journey but to a new floor in the Macmillan Cancer Centre at UCLH.
I find myself on the 4th floor which is for Supportive Care and Apheresis. I am here for the Supportive Care part and not Apheresis which is about removing a certain constituent from the blood.
I am here for my first infusion of Zoledronic Acid which is delivered intravenously. The Zoledronic Acid is supposed to strengthen my bones and will hopefully help prevent further fractures although I will still need to take great care with what I am doing.So it is all new for me today and I will have to see what happens…….
We arrived a few minutes late for my appointment, checked in and then waited 45 minutes before I was called into the treatment room.
Much the same as other intravenous treatments I have had, my blood pressure was taken and was 158 over 88, slightly high I think probably down to nerves with it being a new experience.
I was soon hooked up to a cannula and the drip. I was to have 100ml of Zoledronic Acid followed by a flush. 15 minutes for the acid and 10 for the flush.I barely had time to read my magazine and it was all over, cannula removed, plaster stuck in place and there I was booking my next appointment for 4 weeks time.I did think treatment was every 12 weeks and will check with the Oncology team when I see them in a couple of weeks.