COVID Test 21 April 2021

Today is the start of a busy couple of days, I have Lutetium Treatment on Friday, a Post Therapy Scan and another Covid Test at UCLH on Monday and then Zoledronic Acid Treatment and an Oncology Consultation on Wednesday.

And prior to having Treatment on Friday I need to have a Covid Test and I have opted to go local as it saves a trip to London.

The Covid tests are very easy to book and I would say the only downside is you cannot book them in advance, I could only book for today, yesterday whereas for peace of mind I would have preferred to have had it booked a few days ago.

The test is done locally at a Testing Station that has been set up in one of the Car Parks in Stansted Airport, so very convenient.

So a five minute drive sees me arriving at the site and showing my barcode to the reception guy in the yellow Hi-Viz jacket, he waves me through and I follow the line of cones to the area where at least five testing points have been set up.

I have been here a number of times now and it has never been busy and so I was straight in.

I pulled up at the booth and another guy in Hi-Viz held up a card with a phone number for me to phone, I was of course in the car with all windows closed.

I called the number and was given instructions.

I then pulled forward to where I would do the test and a test kit was passed through my windows that I had opened an inch.

I read and instructions and noticed that I was missing the Absorbent Pad, I put on my four way flashes and another person in Hi-Viz came over, I explained my problem and I was provided with another Pad.

I then went on to complete the test, it is never pleasant sticking the swab down your throat or up your nose but I would think it is something that a lot of us are getting used to these days.

Another new normal!!

Anyway, test done, I made my way to the test drop off point and another Hi-Viz with a grabber took my test from me and I then headed home.

The remains of my test kit.

All I need to do is wait not for the results which I think should be all clear?

Prostap Injection 19 April 2021

It’s always amazing how fast these Prostap Injections comes round, I have them every 12 weeks or 84 days and when I put them in the calendar it seems like they are a very long way away but before I know it I am phoning up the GP to book myself in for the next one!

And this one was no different, I called the GP about 2 weeks ago and got a slot booked in for today.

These days it is difficult to know whether to go early or not and also will I get a parking space or not.  It helps having the Blue Badge as I can park closer and in places I wouldn’t normally be able to.

Anyway I arrived just before my allotted time and pressed the buzzer, my name was taken and I could just about make out the clicking of the keyboard as my name was checked.  And then in my mind I could hear the steps of the receptionist making her way to the front door.

I was directed to the waiting room.

The Waiting Room was empty.

And after a few minutes I was in to see the nurse who was all set to go.

As I was wearing my spinal brace she asked if I would like to have the injection in my stomach while standing up which I opted to do, she had recorded that the last injection was in my right side and so this one was to be in the left side.

A sharp prick in my stomach and the injection was done and I was heading home.

12 weeks until the next one!!

Two days later and a very angry bruise has developed where the injection was done, I have had some minor bruising in the past but nothing like this!  You can see the circle where a small sticking plaster was put over the injection site.

Quite a bruise!

The good news is that it looks worse than it feels, there is no pain at all!

Blood Test Results

Well, it took a week but I finally got my blood test results back from the blood test I had on 8th March.  Not sure why it took so long but I suspect that it took time to be reviewed and processed at the GP’s Surgery.

And there is good news and bad news!

The bad news is that my PSA had gone up from 163 to 241, a rise of 78 when I was expecting it to go down following on from the Lutetium treatment.  I had really hoped that the Lutetium would knock it down as it had done in the past.

On the plus side, for the most part I feel fit and healthy.

I have forwarded the results onto UCLH and will see what they say on the 24th March when I have my next outpatients call.

The rest of my blood work looked ok to me apart from a few things which looked a little low or a little high in one case.

Serum calcium level 2.11 mmol/L [2.2 – 2.6]

Haemoglobin concentration 116 g/L [130.0 – 180.0]

Red blood cell count 4.29 10*12/L [4.5 – 5.5]

Or High

Serum cholesterol/HDL ratio 4.46 [< 4.0]

Now I don’t know what this means, but it looks like my blood count is down a little and that maybe due to the Lutetium.

I don’t know how this may affect the thinking around having another Lutetium Treatment in April but for myself I think it would be worth it but of course I need to listen to advice.

I have done a graph to help track my PSA, I think it tells an interesting story.  It shows that the Docetaxel that I had first of all really made a great impact as did the first set of Lutetium treatments that I had.

Everything else has been less effective although there is nothing that shows what effect the Hormone Therapy may or may not be having as I have been on that consistently since being first diagnosed.

I do wonder how long it took my PSA to reach 226 when I was first diagnosed and how that could have been caught earlier, I am sure it didn’t climb to 226 overnight and probably took a few years or more.

I do think that had I been tested early, perhaps when I was 50 then the disease may have been caught earlier and I would have been a much simpler case to treat.

But that is hindsight and for now I need to focus on treating the current problem and on staying fit and healthy.

Blood Test and Oncology Outpatients

My next Oncology Outpatients was on the 10th March and was a phone call; it was a follow up following my Lutetium Treatment on 19th February.

I thought it a good idea to have a blood test done locally by the GP so we had an up to date blood test for the outpatients appointment.

So I contacted the GP and booked a blood test, it was slightly more difficult than they had been previously and there was a little confusion as to whether the surgery was still doing blood test for the Clinically Vulnerable.  But eventually it was all sorted and I was booked in for Monday 8th March.

Monday came and I turned up for my appointment, I was met at the door by a receptionist and hardly had time to sit down before the doctor came for me.  I had not seen this doctor before, but she was very good and got to the vein first time and before I knew it I was on my way home.

She said they normally get results in a day or two!

Wednesday came and it was nearly time for my Outpatients Appointment.

I checked online and there were no results, ah well it was a good idea!

The Outpatients call was a little anti climatic in that the doctor, who I did not know, just seemed to be familiarising himself with my case, he did ask how I was and I told him of my experience following on from the Lutetium Treatment.

I also asked about my spinal brace again and he said he would look into it although I do not think there are many options, but it is worth asking.

At the end of the call it was agreed that I would have another call in a couple of weeks and that is now scheduled for 24th March and will hopefully focus more on my next treatment.

Hopefully we will have the blood test results back by then!

Post Therapy Scan and Side Effects

So I am writing this a little after the event as I have been a little poorly.

Following on from my Lutetium Treatment on the 19th February, I had a post therapy scan on Monday 22nd February, which all went fine and was as expected.

However, on the way home I started to feel a little tired and achy.  I got home about midday and had some lunch and spent most of the afternoon on the sofa not doing much at all.

Come 8pm I was feeling really fatigued and was experiencing a lot of pain especially in my back, hips, and thighs.  And so, I took some extra pain killers and went to bed. 

And while I slept through, I felt really tired and fatigued come morning and could hardly move, I needed assistance getting to the bathroom.  So I stayed in bed all morning and eventually got up at 1pm in the afternoon.  I tried to have a shower but the pain made me feel nauseous and so I gave that a miss and I had to ask my wife to help me get dressed and help me downstairs.

She was an angel and made me some lunch, which I ate and then I spent the rest of the day taking pain killers and resting on the sofa.  I slept most of it.

My conclusion was that I was suffering from some kind of Radiation Sickness from the Lutetium Treatment.  This was unusual as I hadn’t suffered any side effects after treatment before.  I also surmised that as I was given 4mg of Dexamethasone prior to the treatment this had helped me through the weekend and as it started to wear off is when I started to suffer.

And so the week continued like this, I was in pain and feeling really fatigued, it took all my efforts to get up in the morning and then all I could do was rest on the sofa.  I wasn’t able to walk the dog or do any cooking or anything.

My wife really stepped up and did everything as well as working; in many ways we were fortunate that she was working from home and was around to look after me.

By Wednesday I had text the consultant who administered the Lutetium and she called me back and we discussed what was going on. 

She pretty much agreed with my conclusion although didn’t go as far as calling it radiation sickness, more side effects.

We also agreed a plan of action which was for me to take extra Dexamethasone to give me a boost, I was lucky that I had some spare in the house.  So for three days I took 2mg of Dexamethasone (my normal dose is 0.5mg) and then for another 3 days I took 1mg before reverting back to my normal dose.

This extra dexamethasone really helped and gave me a boost, it also helped get me moving again although it took about a day to take effect.

So that was a really rough week and as I say it was unusual for me to have any side effects from the lutetium.  Next time I have some, which is due in April I will ask for extra Dexamethasone to see me through the week following the treatment and hope that keeps the worst effects away.

Going forward I have an Oncology Outpatients appointment and of course another treatment at the start of April, I will try and get a blood test done so we can see if the treatment has any effect.

Lutetium Treatment No.7

Back at The London Clinic for what is my 7th Lutetium treatment.

The treatment had been delayed from the morning until the afternoon and so I was asked to be there for 1pm. The roads were clear and we made good time and so I arrived about 12.30.

Check in included a temperature check and hand sanitising.  I then had a chance to grab a Flat White coffee, a real treat 😋.

Room 5, a room I had been in before.

I was shown to my room and then all the usual things started to happen, blood and observations were done. I had a cannula fitted and the nurse did a great job of getting it in first time which was a result.

Blood pressure was good.
A neat job.

And I ordered a sandwich and a health drink for lunch.

Lunch is served in disposable containers due to the risk of contamination from radiation.

I was also hooked up to Saline solution to increase my hydration and given an injection of 4mg of Dexamethasone to help prevent bone pain.

Lunch came and was eaten and I waited.

The doctor arrived and we chatted things through about how I was and so on.

I asked about how many Lutetium treatments I could have and she said that in Germany they had been giving as many as 12 to 14 but it varies very much on the individual. She did say that in the UK the most that has been given is 8.

I also asked about how the BITE therapy and Lutetium would work and while nothing is set in stone she thought I would have the 2 Lutetium treatments, another in about 6 weeks, and then should look at starting BITE therapy later in the year and then seeing how that goes. If needed I could then come back to further Lutetium Treatment.

But as with all things it is dependent on how things go, how my PSA is, what future scans show and how I feel.

So what we need is for this treatment to really bring the PSA down and for my bloods to be ok followed by a period of stability.

So after a pause the Lutetium turned up with a small entourage, connecting everything up was very slick and the Lutetium was soon being injected. As before the syringe and the pump were in a lead box which protected those administering the Lutetium from the effects of radiation.

The lead box from which the Lutetium will be injected.

The treatment or Isotope administered was Lutetium-177 with an activity of 7400 MBq. At the date of treatment the exposure rate was 18 microSieverts per hour at 1 metre. The effective half-life of the isotope within the patient is 3 days. No detectable radioactivity is present after 7 to 10 half-lives, depending on the detector used..

The infusion took around 15 minutes and I chatted with the team. For the most part the talk was about where we might like to travel to once we can.

And then it was all done, I had to wait around for about an hour to make sure I was OK and for them to get the paperwork done.

And then I was off home.

I am back on Monday for a post therapy scan with Gamma Camera to see if the radiation has gone to the right places in my body.

CT Scan 17 Feb

Back at UCLH for another scan on my back, a CT scan this time.

The good news about a CT scan is that they are quick, it took 3 minutes for the scan. It took me 3 hours to get there and back? Just saying 😉.

The reason for the scan was to have another look at my back, I think the CT scan can give a different view to the MRI I had before.

As always the people I dealt with were excellent and the scan was quick and simple.

Just have to wait for the results now.

MRI Results 10 Feb 2021

Well, it is 11.10 a.m. and my phone rings and indicates a private number, I suspect it is my Oncology Outpatients call that I am expecting which indeed it is.

And it is a doctor I have spoke to a few times especially over the last few weeks and he has the results of my MRI Scan of yesterday.

Not great news as he said that I have a displaced bone fragment that maybe pushing against the nerves/spinal cord hence the tingling in my toes.  He said that this fragment is not stable and could move about and so I need to be very careful.

They have referred me to a spine surgeon who will review and see what if anything needs to be done. 

On the downside they have said that I should wear my Spinal Brace once more for a period of 12 weeks and wear it for most things although I do not need to sleep in it.

They are expecting more information to come through during the course of the day and they will update me as they get further information.

They are going to email a list of “do’s and don’ts” to me with further guidance about what I should be doing.  The good news is I can still walk and so can still take Teddy out for walks.

Teddy

The MRI did not show any further information about cancer in the spine aside from what I already knew.

So now I am waiting for further information on what I can and cannot do in regard to my back and wearing the brace.

I have also had confirmation that my Lutetium Treatment, number 7 this will be, will be on the 19th at The London Clinic.

So right now it’s a quick trip into the attic to dig out the spinal brace and it’s freezing up there!!!

Update

I had a follow up call with the doctor this afternoon who said that the MRI has been looked at in more detail and they feel certain that the Spinal Cord is not compromised which is good news.

There has also been feedback from the neurosurgery team who feel that surgery is not an option as there is too much damage from cancer and from cancer treatments like radiotherapy and the lutetium, to my spine which discounts surgery as an option.

What this does mean is that they now feel that the spinal brace is more of a long-term solution which is bad news for me, mainly because it becomes uncomfortable to wear after a number of hours and it also gets damp with sweat and perspiration which in itself is uncomfortable, so I have asked if it is possible to have one of a different type.

The one I have is made of fibreglass and fits tightly around my back and chest and I am very sure it does what it is supposed to do. I have seen spinal braces online that have a metal spine and neoprene straps to provide the support and so I would have thought that something like that might work for me, it provides the support but also allows my body to breathe and is more comfortable.

Some other types of braces I have seen.

Obviously, I need to take advice on this, but it is definitely worth asking.

The other thing that came out of the call is that they want to do a CT scan to look at the integrity of the cement from the vertebroplasty procedure so I will be heading back to UCLH in the next week or so!

MRI and a quick bit about my Covid Vaccination

Back up to London this afternoon for a quick MRI to have a better look at my back.

But before that I would just like to say that so far, I have got away with no side effects from the Covid Vaccinations I had last Friday.    Good news.

The drive to London was quick and non-eventful despite there being snow on the ground and road near home.

Food shops were still open in London

I had a late appointment and it turned out I was the last scan of the day so when I arrived, I was quickly processed and instructed to get changed into a hospital gown.

I sat for a few minutes in the empty corridor thinking about how quiet it was, just the faint whirring of a MRI machine behind closed doors.  It was also slightly spooky as you expect hospitals to be full of people moving around.

No one around to admire my fetching gown!

After a few minutes I was called in to the scanning room and asked to lay on the bed, this was torture as lying on flat surfaces really hurts my back and so I asked for some padding to support my back and it felt a little better.

And then I was slid into the drum of the scanner, some instructions came over the headphones and then it started.

The noise never ceases to amaze me, it like being in a tumble drier full of spanners on a fast spin, and the noises change as the scanner does different things.

It lasted about 45 minutes and by that time I was just about ready to make a full confession 😉

I was slid back out of the machine and struggled to sit back up, but I made it and then off to get dressed and the journey hone.

And of course, the wait for the results!

Covid Vaccination No 1 – 5 Feb 21

It was my turn today for the Covid 19 Vaccination, I had previously been sent a text and had requested my slot by filling in an online form.

The vaccination was at Bishop’s Stortford Football Club, a place I am getting to know well after having my flu jab here and also bringing my mum for her vaccination.

Arriving at the Football Club

There was a queue to get in and someone checked our details. Then in the door and we were asked to clean our hands and of course we were wearing masks 😷.

The queue to get in, although long move quickly.

Another short queue and I was sent to booth number 3 and once again my details were checked along with more detailed questions and one around had I ever had a reaction to medication?

I answered that I had a reaction to chemotherapy and so a doctor was called, he was briefed and told me to wait for 15 mins after the injection to see if there was a reaction.

And then I was told that I would be having the AstraZeneca jab and I was asked which arm I would like it in.

I opted for my left arm and then the injection was done, quick and painlessly.

I made my way to the waiting area and watch as people moved in and out. Overall it looked like a pretty slick operation.

My 15 minutes were up and I headed out, there were less people waiting to go in, I guess they close for a lunch break?

They certainly deserve it.

Well done all.