Lutetium Treatment No 6 and a Swab up my nose!

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.

My room showing the screens to protect staff from radiation.

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.

Coffee and a Pain au Raisin

I got to my room and settled in and soon the nurses turned up to do my observations, my blood pressure, temperature and weight.

Two different blood pressure results, it amazes me how it can change so quickly.

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.

The nurse did a good job of getting the cannula in my arm.
Breakfast

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 Covid Swabs ready to be sent off.

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.

Oncology Outpatients 3 June

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 😁👍.

Can I Cope With This Much Excitement?

All this excitement two days in a row.

Today I have been out for a blood test at The Rivers hospital in Sawbridgeworth so a longer drive than yesterday and a pleasant drive it was to. The roads were pretty clear and it took no time to get to the hospital.

Once again I masked up and with my gloves on I made my way to reception. They were practicing social distancing with markings on the floor to help us with social distancing.

I was directed to the blood test waiting area where they were three people waiting. We looked at each other over our masks, it was a little strange just seeing people’s eyes.

I waited about 10 minutes before being called forward.

The nurse was experienced but it still took her two goes to get the needle into the vein.

And then it was over, my blood will be sent to Princess Alexandra Hospital in Harlow and the results will be sent to the GP. I will be hoping for healthy results across the board and especially anything to do with bone marrow function which helps with immunity and the production of white blood cells. And of course I will be looking for a reduction in my PSA, I would love to be back in double figures but cannot imagine it will come down that much.

Last time it was at 144 which is great as it was at 1,585 before I started the Lutetium treatment.

The drive home was pleasant, I was so tempted to go to the supermarket or something but managed to resist!

Now it’s a waiting game for the results.

Oncology Outpatients next Wednesday via a telephone call and then Lutetium treatment on Friday.

Oh that’s a day trip to London 😉.

Next Lutetium Treatment

My next Lutetium Treatment is scheduled for the 5th of June and is due to take place at the London Clinic.

This afternoon I have had a phone call from one of the radiology team to tell me that they have updated their Therapy Pathway and that I needed to go into isolation for 14 days prior to the treatment!

Fortunately I am already in isolation and so this should be no big issue.

She said that I would need to have a Covid 19 test done 48 hours prior to treatment.

Which again shouldn’t really be a problem!

She then asked about when my last blood test was and when the next one would be. Luckily I had just been sorting this out (see my post ‘A Right Palaver‘).

And so I told her.

She said she would write to my Oncology Consultants and ask them to write to my GP to ask them to do the Covid test.

This all sounds simple but you can see where this is going!

She said she would copy me in on the email to the consultants so I would be kept in the loop.

She then recapped what I needed to do.

I then asked a question and as the words came out of my mouth I was regretting it.

I said that I could stay in isolation but would need to go out for the Covid test.

There was silence!

I could hear the brain whirring as this was worked out! Clearly a new problem had been presented.

And so she uttered those words.

‘I will call you back!’

And so now I wait to hear how the GP’s Surgery will handle the Covid test request when they get it and I wait to hear how The London Clinic think Covid testing can be done while staying isolated?

Watch this space!

A Right Palaver

So two simple things need to happen, I need my three monthly hormone injection and I need to have a blood test in time for my next Oncology Outpatients Appointment on the 3rd June.

It would make sense to have them both at same time and have them both done by the GP’s Surgery. After all I normally have my Hormone Injection done by them and I had recently had a blood test done at the surgery.

So last week I started making enquiries about getting this done.

First of all I had to convince them that this was the best plan!

Then they couldn’t access the nurses diaries as they only release appointments 2 weeks in advance.

The person I was speaking to said she would speak to the practice manager and get back to me.

And true to her word she called me back and said that the practice manager had said that I should be referred to the District Nurses who would come to my house and do both the Hormone Injection and the Blood Test.

What a result I thought, I was happy with this outcome.

A few days passed and then I got a call from one of the District Nurses who asked if I was housebound. I said I was as I was classed as Extremely Vulnerable. She asked if I was housebound prior to the virus and I said no.

She said then I wasn’t technically housebound and that they couldn’t visit and I would be referred back to the GP.

Great?

So I messaged the surgery who got back to me the next day, it was the same person that I had previously spoken too!

We discussed the problem and she tried to book me in. She managed to book me in for the hormone injection but couldn’t access the calendar for booking the blood test.

She would call me back!

And she did, to tell me there were no available slots for blood tests and so I would need to go to The Rivers Hospital and have a blood test done there!

The surgery would post me a blood test form to take with me.

I was straight on the phone to The Rivers and managed to get booked in.

So I now have my Hormone Injection on the 27th and the Blood Test on the 28th! One woth the GP and one at The Rivers!

What should have been fairly simple seemed to become very complicated. It’s a good job I am pretty robust and can work through these situations but I can see a lot of people finding this very stressful.

I feel more needs to be done to make these things simpler and less of a palaver!

Fingers crossed🤞

Lutetium Treatment No5 2nd Attempt.

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.

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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.

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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.

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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.

Phone Call, good news,bad news!

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.

Lutetium Treatment No 5 NOT….

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!

Lutetium No 4

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.

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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.

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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.

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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.

tray

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.

Back on Monday for the Gamma Radiation Scan.