Outpatients and Zoledronic Acid 6 Jan 2021

Back to London again today for my Oncology Outpatients Appointment and Zoledronic Acid infusion.

The good news is that my Covid test came back negative so I am all clear for treatment and pleased to be Covid free.

The bad news is that my PSA has risen to 150 from 85 about 6 weeks ago. And so it looks like my PSA is starting that upward move again after being brought down by the Lutetium. Overall I am feeling pretty well aside from pain in my back from the fracture I had.

I was pretty disappointed that my PSA had risen so much in a fairly short time, it would seem that the effects of the Lutetium have worn off.

So the plan now is to have a PSMA PET scan and have a look at what is happening inside with a view to rechallenging the cancer with more Lutetium.

I have two Lutetium treatments left that I could have and although we are entering very much into new territory with the Lutetium it is thought it is better to rechallenge sooner rather than later. Well at least the first one and then see when to use the second one.

I did ask about what might be done after the Lutetium treatment has been used and the answer was that it would be another clinical trial. The clinical trial mentioned was called BiTE, I think and here is a brief descriprion of it.

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

If I understand it, it is similar to Lutetium in that it consists of two parts, the first part is attracted to the cancer cells expressing PSMA and instead of using Lutetium to kill the cancer cells it attracts the bodies own T-Cells to attack the cancer cell.
I think I have a bit more to learn about this and will certainly be asking more questions next time around!

Not surprisingly by the time I got upstairs for the Zoledronic Acid Infusion my blood pressure was fairly high at 166/98 so they gave me a few minutes to relax. It also gave me time to think about what I had just been told downstairs and to calm my racing mind.

It’s all done wearing a mask

A few minutes later and I was at 145/80 and they were happy to continue with the infusion.

I had already been fitted with a cannula and while I hate to keep mentioning it, it did take 3 attempts to get the cannula in and its not the needle going in that stings, it’s the wiggling about of the needle that really stings!!!

Just waiting for the drip to be attached.

The Zoledronic Acid infusion itself took about 20 minutes and soon the cannula was being removed and I was told I could go.

Jacket on I made my way outside and made my way home.

By the time I got home I had my next outpatients appointment booked and that is scheduled for 3rd February and so hopefully I will have a PSMA PET scan before that, it could be a busy couple of weeks!

Covid Swab and Blood Test 4 Jan 2021

Up to London today for a Covid Swab Test and a Blood Test at UCLH

The reason for the Covid Test is that I am due back at the Hospital on Wednesday for an Outpatients Appointment following by Zoledronic Acid treatment and because of the treatment I need to have the Covid Test and so I thought I may as well have an up to date blood test at the same time so we can see how I am doing.

Given the Covid situation in London I listened to advice and took a car up to London, mostly to avoid the tube but also the train as well.

London was fairly quiet, there were cars around and some pedestrians but nothing like you would expect on the first day back after the Christmas Break.  There was a notable exception at Costco on the North Circular which had a long queue; people stocking up before the next lockdown I guess.

A fairly quiet Tottenham Court Road.

And so we arrived early for my booked time for the Covid Test.

The same as last time, the Covid tests were done in the Phlebotomy Department however there was a little confusion as when I arrived at reception I said I had a Covid Test and a Blood Test booked and was told to take a number on a paper ticket, there were 21 people in front of me so I found somewhere to sit.

It took about 45 minutes for my number to come up and in I went.  The phlebotomist listened to my advice to try a vein in my hand and was soon drawing blood.  It flowed well initially but started to dry up after a couple of the tubes were filled, I was also giving blood for research so there were additional tubes to be filled.  These last few proved a little troublesome and the phlebotomist wiggles the needle to try to improve the flow, it stung a little and I winced.

She apologised but i said there was no need, but it did sting!

And soon I was done only to find out that I needed a sticky label type sticker before I could have my Covid swab and so it was back to reception!

Fortunately I didn’t have to wait long before I was called again.  The nurse started to say that I was late for my slot.  I told him that I had been there since before my slot and that I had been misdirected.  He gave a knowing shrug and took the swab.

So now it is waiting time, hopefully I will get the Covid result tomorrow and find out about my PSA and bloods on Wednesday.  Hopefully the PSA will be stable and the rest OK.

I look forward to finding out on Wednesday.

Blood Test Results 26 November 2020

The great thing about todays technology is you can now access your test results online and so I now have my test results from the 24th November although I have not had a phonecall from the surgery yet and indeed I may not get a phone call as the test results for the most part are normal.

This test is the mid point test between my ocology appointments and the main thing I am interested in and the main thing they are interested in is my PSA which has risen slightly to 93.04 which is abnormal (as it states below) but is expected, it was previously, 6 weeks ago at 85, so while it is way above the range it should be (0.0 – 4.5) it is fairly stable and it is stability that we are looking for.

That and my general health which for the most part is good so I believe that when my Oncologist sees these results he will be pleased and will wait to see me in January 2021.

A copy of the blood test results are below for those who might be interested, I have highlighted things of interest.

Clinician viewed24 Nov 2020
Result typePathology
TestsSerum prostate specific antigen level
Filed by
ResultAbnormal, but expected
What you need to doOther (copy to oncology)

Pathology Investigations

Serum prostate specific antigen level 93.04 ug/L [0.0 – 4.5]

Above high reference limit

Please note: From 09/10/2009, age related ranges are reported — Afro-

Caribbean reference ranges:- Age :

40 – 49 Up to 2.0g/L —

50 – 59 Up to 4.0g/L —

60- 69 Up to 4.5g/L —

70 -79 Up to 5.5g/L ~

Clinician viewed24 Nov 2020
Result typePathology
TestsLiver function tests
Filed by
ResultNormal
What you need to doNo Further Action

Liver function tests

Serum albumin level 36 g/L [35.0 – 50.0]

Serum total bilirubin level 8 umol/L [0.0 – 21.0]

Serum alkaline phosphatase level 66 iu/L [30.0 – 130.0]

Serum alanine aminotransferase level 18 iu/L [10.0 – 37.0]

Result typePathology
TestsRenal function tests Bone profile Full blood count
Filed by
ResultSatisfactory
What you need to doNo Further Action

Renal function tests

Serum sodium level 143 mmol/L [133.0 – 146.0]

Serum potassium level 3.9 mmol/L [3.5 – 5.3]

Serum creatinine level 80 umol/L [62.0 – 115.0]

Glomerular filtration rate > 60 mL/min [60.0 – 150.0]

GFR COMMENT Interpret eGFR with caution for people with extremes of muscle mass.

Note: CKD staging would not apply in Acute Renal Failure.

If your patient is an Afro-Caribbean, multiply eGFR result by 1.212

For general guide www.renal.org/eGFR

Bone profile

Serum calcium level 2.19 mmol/L [2.2 – 2.6]

Below low reference limit

Calcium adjusted level 2.27 mmol/L [2.2 – 2.6]

Serum albumin level 36 g/L [35.0 – 50.0]

Serum inorganic phosphate level 1.36 mmol/L [0.8 – 1.5]

Serum alkaline phosphatase level 67 iu/L [30.0 – 130.0]

Full blood count

Haemoglobin concentration 116 g/L [130.0 – 180.0]

Below low reference limit

Total white blood count 6.2 10*9/L [4.0 – 11.0]

Platelet count – observation 237 10*9/L [150.0 – 450.0]

Mean cell volume 87 fl [76.0 – 96.0]

Red blood cell count 4.16 10*12/L [4.5 – 5.5]

Below low reference limit

PCV 0.360 /L [0.4 – 0.51]

Below low reference limit

Mean cell haemoglobin level 27.9 pg [27.0 – 32.0]

Neutrophil count 3.8 10*9/L [2.0 – 8.0]

Lymphocyte count 1.3 10*9/L [1.0 – 4.8]

Monocyte count – observation 0.7 10*9/L [0.2 – 0.8]

Eosinophil count – observation 0.4 10*9/L [0.0 – 0.4]

Blood Test

Today I have been over to the GPs surgery for a blood test and I have to say that it went very well.

The doctor was very good and got into the vein first time and got the blood out and the vacutainers full. I was also quick to be seen, I barely had time to sit down.

This blood test is roughly at the 6 week point between my last appointment at UCLH where they are now seeing me every 3 months when I have my Zoledronic Acid treatment for my bones and the next one at the start of January.

Fingers crossed that the results will come back and show no major increase to my PSA and also nothing else to worry about.

Overall I feel fit and well and am getting around a lot better although I still use a walking stick when I go out walking.

I have tried to reduce the amount of morphine I take for the pain in my back, I now take 10mg in the morning and 5mg at night.  The are slow release tablets and cover me all day.  I did try stopping the nighttime dose but found it a little painful in bed and it interrupted my sleep so I have started to take them again.

I also take 10mg of Amitriptyline at night and wonder if I could get away with not taking this any longer. I think I will discuss it with my Oncologist in January in case there are side effects coming off it.

The Acupuncture that I had has been going well but I think it was more effective when I was having 3 sessions a week rather than one a month. So I am thinking of stopping them.

As I say I am feeling a lot better and what I really need to do is continue to build up my strength and endurance by walking more. I still need to be very careful with my back and in particular with bending and lifting as the vertebrae above and below T12, the one which partially collapsed and I had cement put in are both very vulnerable to collapse as well although I hope the Zoledronic Acid is helping to strengthen them 🤞.

X-Ray showing my damaged vertebrae.

So I am hoping the results for the blood test come back soon and show good news.

Prostap Time Again

I have a Prostap Hormone Injection every 12 weeks and it’s amazing how quickly it comes around. The prostap is a hormone injection which restricts the production of testosterone which in turn helps to feed the Prostate Cancer so it is important that I have this although I am not sure how much it is doing in terms of fighting the cancer.

What I do know is that it gives me lots of hot flushes, some mild some pretty intense.

I arrived for my appointment on time and discovered that the surgery now had a video doorbell! I donned my mask and pressed the button, there was a fairly long pause before a voice asked me if I had an appointment, I said I did and they then asked my name. I could hear the clicking of the keyboard as my name was typed into the computer. Another pause and then the voice said OK I will be with you in a moment and the connection to the doorbell was severed.

In my head I could hear the footsteps of the person walking to the front door!

I was allowed in and asked to disinfection my hands and then directed to take a seat.

Within a minute or two the nurse appeared and called me into the treatment room. The injection had already been prepped and she told me that last time I had the injection I had it in the right side of my stomach and so this time I would have it on the left side.

Although I was prepared for the injection I managed to jump as the nurse touched me, I think it was her cold hands! My jump caused her to stratch me, my fault as I had moved.

Second time I was ready and the needle was in and the fluid was pushed into me. Then it was over and a plaster was put over the hole where the needle went in.

The prostap injection uses a larger needle than a standard syringe and so only certain nurses can administer this injection and so they get plenty of practice with it and are very good at giving the injection.

The nurse looked up the date of my next injection in 12 weeks and so I would be back on the 27th of January 2021. Not my first medical appointment for 2021!

This was my 14th Prostap Injection, 13 have been done at the GP’s surgery and one at UCLH. I think I will continue to be on Prostap for the foreseeable future which I don’t mind although I could do without the hot flushes.

Oncology Outpatients and Zoledronic Acid

Back up to London today for my Oncology Outpatients appointment and for my Zoledronic Acid infusion.

Given I was on the 09.07 train from Stortford it was fairly quiet although the tube was busier.

The streets were quiet with arrows to mark the way!

I made it to the hospital in good time. On arrival I was asked to wear one of their masks which was different from when I was here on Monday.

I checked in and made my way to the first floor reception.

My name was soon called and I was pleased to see that my appointment would be with Dr Mark Linch, the main man, I hadn’t seen him for months 😀.

He asked how I was and I told him I was feeling well apart from my back although I also said I was feeling much better.

He looked up my PSA and told me it was down slightly to 85 from 90 and a high of 1,585 a year ago.

Overall he was pleased at how the Lutetium Treatment had gone. The PET Scan showed that tumours had reduced in size and activity which was great news.

He also said that he felt that the Immunotherapy treatment I had 18 months ago may have helped to prime my immune system to help out with the Lutetium. He also said that the immune system can develop memory and may continue to attack cancer cells now that they have been shown what to do.

I have been wondering about the effects of immunotherapy and how long it stays in the body and active. Is it a permanent change or does it fade over time? I don’t think they know yet?

So now I am to go onto what is called Active Surveillance and keep an eye on my PSA. I am go have a blood test in around 6 weeks and if it is stable I will have an Outpatients Appointment in January 2021. If there is a rise then I should let them know and I will have an appointment sooner.

I also raised the point that I seemed to bruise easily and that my skin seemed very fragile, he thought this may be down to the Dexamethasone and so reduce my dose down to 0.5mg from 1.00mg.

So once the appointment was over I headed upstairs for my Zoledronic Acid infusion. While there wasn’t a lot of people around I did wait a while before being called into the Treatment Room.

I was then fitted with a cannula, again it was a struggle to get it in and while the piercing of the skin is not too bad the wiggling around and trying to get it in the vein makes me wince.

My blood pressure was quiet good today the top image is before the infusion.

Again it took two attempts to get it in, both in my hand. They started with the bigger pink needle but then used the smaller blue needle the second time.

Finally fitted

Once the cannula was set up I then had another wait for the infusion and it was about 12.10 before the infusion was started. Its 15 minutes for the infusion and another 10 minutes for the flush.

The infusion was no trouble at all and soon the cannula was being removed without the same amount of fuss as going in!

It’s all about this little bag of liquid!

And then I was free to go and hopefully I will not be back at UCLH until next year 🤞😁.

I am really pleased with the news I had today and just need to think about what else I can do to help myself.

My back is getting better and I feel stronger so longer and more frequent walks. I need to be very mindful of my back as it is still very fragile so exercise that will not be a threat to that is a must.

I think I will also look at my diet again both in terms of health and cancer prevention but also with a view to losing weight.

So back on the train feeling happy and looking forward to the future.

Covid 19 Swab and Blood Test

Well I am off to London today, to UCLH for a Covid 19 test. It’s actually a bit of a pain as I need to go all the way to London just for a test before coming up on Wednesday for an Outpatients Appointment and Zoledronic Acid treatment.

It has been a while since I have been on a train so it will be a useful recce for Wednesday.

The train arriving at Bishops Stortford

I am also hoping to get a blood test today as they couldn’t get blood out last time. I have spent the morning drinking water and have had at least 2 pints on top of tea and coffee. I hope the extra fluids will make it a little easier to draw blood?

The train was quiet and so it was easy to maintain social distancing, the tube however is a little different and is slowly filling up. As you can expect there are still those who feel they don’t need to wear a mask or wear it correctly!

Soon I was walking down Tottenham Court Road, they were arrows on the ground to help with distancing but clearly they were invisible to some!

I arrived at the Macmillan Cancer Centre and was pleased to find out that the Covid Testing was being done where they do the blood tests 😀.

I checked in and took a ticket, I was number 8 and the counter was on 7, I had hardly say down when I was called in. It was to be a blood test first.

There were two plebotomists in the booth, one to take the blood and another to record my details.

Once more they struggled to get blood out despite all the extra fluids I had drunk. But she was very good and it was painless although watching her wiggle the needle around made me wince.

Second attempt was in my left hand where she struck blood and soon it was flowing, albeit slowly.

Blood taken I was moved into another booth for the Covid Swab, I was pleased someone was going to do the swabbing, it’s better than doing it yourself.

And then I was done, I must have only been in the hospital for 10 minutes or so. I bet it won’t be so slick on Wednesday!

And then it was time for my journey home. Around 2 hours of travel time for 10 minutes in the hospital!

Just need to wait for the results and the all clear which I should get tomorrow 🤞.

Bowel Cancer Test

I received a letter a few weeks ago telling me that as I was now over 60 😲, that I was eligible for Bowel Cancer Screening and that a kit would follow in the post.

And true to their words a screening kit arrived in the post. I opened and read the instructions which is basically a case of using a small scoop to scoop up some poo 💩 and then put it back in the bottle and then put it back in the post.

The Bowel Cancer Test Kit

Simple!

The hard part is making sure that the poo does not go in the toilet bowl water. So when the time came I put some loo roll down the toilet sat down and carefully positioned myself.

And I am sure you can work out the rest and don’t need any pictures 😉.

Soon I was scooping up some poo and carefully putting it into the little bottle. This done I completed the immediate job at hand and then later in the day popped the sample into the post in it’s return package.

I believe I will get the results in a couple of weeks. I do wonder if it will pick up on my existing cancer although I believe the test looks for blood in the poo and if found further testing is done.

So now it us all waiting game while I wait for the results.

Fingers crossed 🤞.

Flu Injection 28th September 2020

I normally get a flu injection but have had to organise it myself but this year has been different due to Covid and to my mind it has actually been better.

I received a letter a few weeks ago with the appointment time on it and scheduled it into my diary. Then a few days ago I got a text reminding me of the appointment.

The appointment was to be at Bishops Stortford Football Club and not at the GP Surgery.

The football club is only a few minutes drive away and so I arrived about 5 minutes before my allocated time.

I was met by a man who gave me some simple instructions to follow and soon I was parked up and someone came to my car and told me where to go.

I headed into the building and was guided to a desk where my details were checked and then into a short queue for the injection.

I didn’t wait long before I was sat down, my name was checked again and the injection painlessly administered.

And then I was on my way out and back home.

Overall I have found this to be very well organised and very quick and simple.

Well done to all those involved for making it so easy.

PET Scan 14 Aug 2020

Well it’s an adventure today, I am off to UCLH for a PET Scan and I have decided to go by train and tube. The PET Scan is a follow up on the Lutetium treatment I have been having and will take a look inside to see how things are. My PSA has been stable at around 90 and the scan will help decide what I do in regards to treatment.

Of course my big dilemma was what to wear and take, it was cooler than it has been and wet. In the end I opted for shorts and a light fleece and a waterproof which should cover all options. Then I needed masks, gloves, etc.

I left a little early as I hadn’t been on the train for a while and I knew that there was building work going on at the station. I was pleasantly surprised that I got parked very easily and used my Blue Badge to get a disabled parking space close to the station entrance. That said the car park was not busy so I guess not many people are using the train.

At the train station

The train was not that busy so I found a seat and settled down for the first part of my journey.

The train to Tottenham Hale was quick and smooth. 

On arrival at Tottenham Hale things had changed a little as there was also building work going on there.  But my transition onto the tube was also quick and easy.

Tottenham Hale was not that busy as you can see.

Going down

The tube train itself was a little busier and would fill up as we go into the city.  The tube was very hot so shorts were a good choice.

I arrived at the hospital early with the view that I would get a blood test before my scan.  I  made my way to the first floor and found where the blood tests were done. I normally have blood tests done in the Macmillan Cancer Centre but would try the main building .

I took a ticket and waited .

No luck and I had to give up and head to Nuclear Medicine for my scan.  If I can I will try for a blood test after the scan.

I arrived at Nuclear Medicine at the right time and filled in the questionnaire.

It was not long before I was taken to a prep room and fitted with a cannula. Sounds simple but it took three attempts to get it in, the actual penetration of the needle is not too bad, it’s the wiggling it around to get the needle into the vein that gets me!

Once the cannula was fitted I was then injected with the radioactive element that would be attracted to the cancer and then show up on the scan, showing the tumours and there size, in the past they had reduced in size.

Third time lucky getting the cannula in!
The radioactive injection comes in a heavy lead box.

I had then to wait an hour for the radiation to circulate around my body before the scan.

The lights in my room are lowered so there is only one thing to do…  zzzz.

The hour passed quite quickly and I was soon in the scanning room.  I had difficulty lying flat on the bed which hard but managed to get into a position I could hold.

Once more I closed my eyes and slowly I moved through the scanner.  Fortunately this was nice and quiet, not like a MRI.

A radiation sensor in the hall shows the background radiation and the lower shows it when I put my hand over it.

Then it was time to get dressed and go.

I decided not to go for a blood test after all I don’t know when my next outpatients appointment is yet and so will try and get a blood test closer to that date so it is more relevant .

The journey home was quick and easy.

All I need to do now is wait for the results of the scan.