Oncology Outpatients and GFR Estimation 3 Sample Scan and other stuff – 21st July 2021

Well, it’s a full and busy day at the hospital today in preparation for starting chemotherapy on Friday.

Before having any treatment at UCLH you now need to have a Covid Swab Test done at the hospital which is understandable. What I don’t fully understand is why you don’t need the test for scans and other tests.  So, this is another reason to be here twice in a week.

On arrival I headed for the Blood Test department and booked in for my Covid Test, as it was early, I only waited a few minutes before I was called in for my blood test.  The phlebotomist had barely got the needle in my arm when the receptionist appeared and said I was in the wrong place as I was booked into something called “The Pod”.

Just arrived at the hospital.

So, without hesitation the Phlebotomist pulled out the needle and aborted taking my blood which seemed a bit strange as she had completed the painful and difficult part of the process and could have soon drawn my blood as well!!

I was thinking that today I will be a human pin cushion!!

I got myself sorted and made my way upstairs to “The Pod” which was a portacabin type building setup just outside the exit doors.  I was met by the nurse who was going to take my blood and do the covid swab.  He wasn’t quite sure why I was booked into the pod, but I suspect someone had made an error while booking me in and booked me into the wrong place.

Anyway, the covid test and the blood test then went smoothly although by now I had two plasters on my arms where the different needles had been put into my arm.

Then it was off for my outpatient’s appointment, I had my eye on the coffee stand and a Flat White but thought I should head up for the appointment.

The outpatient’s appointment went fairly smoothly and was just a simple check up to see how I was feeling and to get me to sign the consent form for chemotherapy.

Job done it was now time to head for the main building and the Nuclear Medicine department where I was going to have the GFR Estimation 3 Sample Scan.

The Main Building.

Once again, I eyed the coffee stand but I knew there was another one in the main building so off I went only to discover that the coffee stand in the main building was closed!!

It was too far to go back and so I headed up to Nuclear Medicine and checked in and while the procedure is called a scan it’s not.

What happens is that I was injected with a radioactive source and then had to wait 2 hours while the source circulates around my body and then they would take 3 blood samples each an hour apart.  The 3 different blood tests are then compared and from that comparison they can work out the strength of the chemotherapy I can have.

GFR stands for Glomerular Filtration Rate and is a test which measures Urine Albumin which is a protein in that is filtered by the kidneys and so by measuring the amount of Albumin over the 3 different blood tests they can work out how well my kidneys are working and how much chemo I can have.  The radioactive source enhances the test and they can see how fast the radioactive source is being processed by my kidneys.

I hope that makes sense?

This is the first time I have been through this process and so it must be something that they do when using Carboplatin the chemo I was going to have this time.

Back to being a human pin cushion!

What the process also meant was that I was to have 2 cannulas fitted, one to inject the radioactive source and the other to be used to take the three different blood samples.

Cannula One

I was fitted with one in my left hand and the radioactive source was administered and then the cannula was removed.

I was then told I could do what I wanted for the next 2 hours while we wait for the source to circulate and so I thought it was coffee time!  Only to be told no tea or coffee, I needed to be caffeine free!!

Ah well.

I checked the map and looked for a nearby park to sit in and read my book for an hour.  I found a park called Gordon Square which was nearby and found a shady spot to read. 

As an aside the book I am currently reading is “The Stand” by Stephen King, which is about a global pandemic, quite topical for a book first published in 1978!!

Time passed quickly and soon it was time to head back to the hospital another cannula and the first of my blood samples to be taken and then it was a case of waiting an hour for the next sample and so on.  I couldn’t go far and so read and dozed in between the samples being taken.

Finally, the third sample was taken, and it was time to head home, it felt like a long day and I was feeling a little tired, I also had four plasters where the different needles had been.  I call these sympathy plasters as they will get me a few minutes of sympathy when I get home!!

I would soon be home and be able to rest before returning on Friday.

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!

A Week Away

I am fortunate enough to have just had a week’s holiday in the Gower Peninsula and while it was not planned it came at the perfect time as it allowed me to rest and recharge both my body and mind prior to starting Chemotherapy on Friday.

We had plenty of time to relax but also spent time walking along the beaches and headlands in the fresh air.

I now feel ready to take on chemotherapy and whatever it may throw at me.

Tomorrow I am at UCLH for an outpatient’s appointment and a scan and then on Friday I have the first of this series of chemo treatments.

PSA 305 – 2 July 2021

As part of my visit to UCLH on Wednesday for my outpatient’s appointment I also had a blood test and today I got the results which are for the most part ok but one of the things I keep a close eye on is the PSA or Prostate Specific Antigen.

And on Wednesday at the time of the blood test my PSA was 305 which of course is very high and has gone up 10 from 295 at the start of June.

While it has gone up, I am actually pleased that it has not gone up by much.  That said I started the year with a PSA of 150 so it has doubled over a six-month period.

For those who may not know the PSA for my age should be around 4 so 305 is very high but it has been as high as 1,585 so in many ways it is in a good place.

The PSA is not an indication of cancer but a high or rising PSA can suggest some kind of problem with the prostate like an infection or cancer.  But as we know that I have Prostate Cancer any rise in the PSA most likely means an increase in cancer activity (growth).

This of course all ties in with the Lutetium treatment ceasing to be effective against the cancer and so hardly comes as a surprise.

When I start my new treatment, Carboplatin, in a couple of weeks I will be looking for a decrease in my PSA and the bigger the decrease the better.

So watch this space as I will be taking a keen interest in my PSA over the coming months.

Oncology Outpatients 30 June 2021

Firstly, apologies for not keeping my blog updated and I hope this is a new start to more regular posts.

I am off to UCLH today for my Outpatients appointment. There are a couple of things to catch up on with the team.

On my way to the hospital, deep in thought!

I recently had a gene test to see if I have the BRCA 1 and BRCA 2 gene mutations, if I do then it is likely that I could have PARP Inhibitors as my next treatment.

If not it is likely that they will try CarboPlatin, which I believe is a type of chemotherapy.

So a lot at stake at this appointment. I will also have a blood test and see how that looks and what my PSA is.

Waiting!

So back home again now and trying to take in everything that was discussed, it was a slightly longer appointment as there was a lot of ground to cover. I was also given 17 page report on the Foundation One Gene Test that I had on 9th June.

The Foundation One Test was a test to see if I have the BRCA 1 and/or BRCA 2 Gene Mutation. If I do then I would be able to be treated with PARP Inbitors and of course if I don’t then I can’t.

I will try and write more about BRCA and PARP in due course, it’s new to me and so I am still trying to take it in.

That said it turns out I do not have either mutation and so PARP is not suitable for me and so I might not go into too much detail!!!

The Foundation One report is quite complex and is aimed at Doctors and trained health care people and goes into a lot of detail to do with Gene’s.
It goes into a lot of detail and just the summary looks like this!

Genomic Signatures
Blood Tumor Mutational Burden – 3 Muts/Mb
Microsatellite status – MSI-High Not Detected
Tumor Fraction – Cannot Be Determined


Gene Alterations
For a complete list of the genes assayed, please refer to the Appendix.
TMPRSS2 ERG-TMPRSS2 non-canonical fusion
AR amplification
DNMT3A E814, R366fs41
TET2 C1271fs*29
TP53 R248W

So a bit of reading is needed to take all of this in!!

Although it does turn out I have some gene mutations but nothing that has a treatment linked to it and where they do they are common with men with Prostate Cancer.

I hope all that makes sense?

And so with PARP no longer viable as treatment options we spent sometime discussing other options, these come down to two options.

Carboplatin and Radium 223

Carboplatin is a type of chemotherapy often used with ovarian and lung cancer and sometimes used to treat prostate cancer. There is a small requirement to have certain gene mutations with this but the team thought it a viable treatment for me.

And Radium 223 is a radioactive treatment which targets cancer cells in the bones. And one of the main problems for me is the metastasese in my bones and so Radium ticks a lot of boxes. On the downside it can cause damage to bone marrow and the ability to produce red blood cells.

So after some discussion and baring in mind that I have had quite a lot of radiation we agreed that we would start with Carboplatin and then go to Radium 223 after that. This gives my body and in particular my bones time to recover more from the Lutetium treatment and while they will never fully recover the radiation will continue to decay and hopefully the negative effects of the Radium will be reduce.

One of the problems I am facing is that I am starting to run out of treatment options which, needless to say, is a little worrying.

One small glimmer of hope is an upcoming trial of something called BiTE or the BiTE study. Again more reading required and the summary of this states.

Study of Pasotuxizumab, a PSMA bispecific T-cell engager (BiTE®) immune therapy mediating T-cell killing of tumor cells in patients with advanced castration-resistant prostate cancer.

Which is all a bit of a mouthful but hopefully the Carboplatin and Radium will buy me time for BiTE to be something that I may be able to use or at least a trial I can take part in.

In the meantime I am staying optimistic and making the most of everyday, planning holidays and trips away.

Another blood test!

So the immediate plan is to start me on Carboplatin in 3 weeks time, I have had a blood test today to check if my bloods are ok and have an outpatients appointment booked for 9 a.m. in three weeks which hopefully will be followed by the first Carboplatin treatment.


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.