Three Years On

I can’t believe it has been over three years since I was first diagnosed with Advanced Prostate Cancer, it has been a fairly tough time with lots of up’s and down’s. I think the main thing that has kept me going is a positive attitude and the support of my wife and family and to them I say a big thank you.

The diagnosis I was initially given was.

  • Carcinoma of the Prostate T3b N1 M1 PSA 226 Gleason 9

Since then my PSA has been as low as 1.6 and as high as 1585.

In summary here is a list of the main cancer treatments I have been through. Alongside these there have been a number of other treatments to treat the side effects of the main treatment, Steroids for example.  Side effects have been tough at times and diverse, from minor to visits to A&E.

  • Hormone Therapy – Prostap Ongoing
  • Chemotherapy – Docetaxel
  • Radiotherapy – On Spine and Shoulder 3 times
  • Enzalutimide
  • Immunotherapy – Nivolumab and Ipilimumab
  • Chemotherapy – Cabazitaxel
  • Dexamethasone
  • Lutetium 177 – Current Treatment

Below is a list of the different scans and tests I have had over the past 3 years. For the blood tests I have written 42 at least, this is how many blood tests I have had at UCLH, on top of this I have had loads at PAH and with the GP, I would estimate that this figure is closer to 70 blood tests.

I believe to rest to be more accurate.

  • Blood Test 42 at least
  • Bone Scan 10
  • CT Scan 7
  • MRI 1
  • Ultrasound 1
  • Radiotherapy 12/3
  • Prostap Injection 10
  • PET Scan 1

And of course on top of this there have been the regular outpatients appointments and other trips to the hospital.  At times I have been to the hospital everyday for a week and at other times just a monthly visit.

Perhaps the worst trip was when I was hospitalised earlier this year with concerns around spinal cord compression.

I am really appreciative of the hospital staff and the service and support they provide, there have been hiccups but for the most part the service has been excellent and I feel lucky to be able to have this kind of service.

I am hopeful that the Lutetium is working as it should and I look forward to the future.

A Busy Tuesday

I awoke with a lot of pain in my legs this morning, I had been suffering for a couple of days and it was getting worse.

So Barbara booked me an appointment to see the GP and off I went.

I got a taxi to the doctors because I was having trouble walking, the doctors clinic was upstairs in the surgery but they were kind enough to find a room downstairs for him to see me.

It was long before he turned up and I was in.  He asked lots of questions and didn’t do a physical examination.

After the questions he concluded that it might be Polymyalgia, or polymyalgia rheumatica.  This is a condition that causes pain, stiffness and inflammation in the muscles around the shoulders, neck and hips and so I could see why he would think that.

He also said another blood test was needed to check for inflammation markers.

He prescribed Prednisolone Steroids to treat the Polymyalgia, the same steroids I had spent the last 6 weeks being weaned off!

So I went to the chemist and picked up my prescription but decided to double check with the oncology team to see if they were OK with me going back on Prednisolone.

Today I also had an appointment at UCLH for a PSMA PET SCAN, to check to see if I was producing enough PSMA (Prostate Specific Membrane Antigen) to allow me to take part in the Vision Trial, the trial which uses Lutetium 117 to kill the cancer cells by seeking them out via the PSMA.

And so it wasn’t long before I was off to UCLH on the train carrying a walking stick to help me along the way.  Barbara was coming with me which would be a great help given my condition.

We arrived at UCLH slightly early but was soon seen by the team in Nuclear Medicine.

The procedure was going to be slightly different to the procedure for a bone scan in that they keep you in for an hour after administering the injection because it is a fairly high dose but with a short life.

So I was fitted with a cannula and before long I was injected with a radioactive source called Galium 68.

IMG-20190628-WA0002

I was lying on a bed and before long I had nodded of.

I was awaken for the scan, I had to empty my bladder and then I was in.

For the scan I had to lie with my arms crossed above my head!

Well that’s OK I hear you say, and it is, for about 10 minutes and then after that it become very uncomfortable moving in painful as time goes on.

So I was very pleased when the 30 minutes of the scan were up and I could bring my arms down to a normal position, I could feel the blood running back into them!!

I was asked to sit outside for a few minutes to recover while they checked the scan.

I asked if the scan showed I had lots of PSMA and like all radiographer they said they could not say and I will have to wait for the results.  Why do they do this????

Although she did smile and say I could go home and relax which I took as code for yes it’s OK so fingers crossed!!

So not I have to wait for my oncology outpatients appointment to find out the result.

Back soon;-)

Oncology Outpatients

Back at UCLH this morning for an Outpatients appointment. I am hoping to sign the Consent Form for the Vision Trial and for another trial using Niraparib.

I have read through both Patient Information Sheets and am happy to sign the consent forms.

So waited about 20 minutes for my appointment and was seen by a Spanish Doctor with a very long name who we will call Blanca.

She went through the information sheets for both the Vision Trial and the other trial which we now know is called Galahad.We were also seen by Professor Attard as he had to sign off on the Vision Trial.

The Vision Trial is the one I am most interested in as I feel it may offer the best results. The Galahad trial is a bit of a long shot as I was checked for this as part of the Neptunes Trial last year and I didn’t meet the requirements for the trial then, last time they used a tissue sample from a biopsy to check and this time they are checking the plasma. They say there is a slight chance I might qualify this way but its a long shot!

I need to get my head around the Galahad Trial, it’s all to do with PARP Inhibitors (which sounds like something from Star Wars!) so please excuse me being a little vague about it.

As I am back in trial mode the appointment was followed by blood tests, urine sample, blood pressure, height and weight etc.

I also need to go for an ECG which is normally quick and easy.

No More Chemo 8 May

Heading back up to London on a wet and overcast day that made me feel a little down or maybe a sense of foreboding.

I was already worried about my rising PSA and whether it was still rising, at my last appointment it was at 398, what would it be this time?

I had a later appointment so we were travelling later in the morning not that you could tell the difference upon arrival at the Outpatients Reception, it was as busy as ever.

We waited a short while for my appointment and was pleased to hear that we would be seeing Dr Linch.

I felt he was genuinely pleased to see us when he walked into appointment room although he had that look upon his face!

Yes it was bad news, my PSA had risen to 481 and while the bone scan didn’t show any new tumour sites it did show an increased uptake in the existing sites, they glowed with greater intensity on the scan images.  I would stop chemotherapy as well.

Quickly the conversation turned to treatment options and he was candid in saying that we were running out of options and really we needed to see the results of the CT scan which is booked for the 12th.

One treatment option is the Vision Trial and the use of Lutetium 177 (LU177) although this is a randomised trial and I could end up in the control group.

The next options was another trial called the Court Trial which uses Glucocorticoid Receptor or GR Inhibitor.  I borrowed the description below from a website and still need to do further research to fully understand this.

“The major obstacle in the management of advanced prostate cancer is the occurrence of resistance to endocrine therapy. Although the androgen receptor (AR) has been linked to therapy failure, the underlying escape mechanisms have not been fully clarified. Being closely related to the AR, the glucocorticoid receptor (GR) has been suggested to play a role in enzalutamide and docetaxel resistance. Given that glucocorticoids are frequently applied to prostate cancer patients, it is essential to unravel the exact role of the GR in prostate cancer progression. ”

The third option was to send me to the Sarah Cannon Research Institute to see if they have any research I could be involved with that would do me some good.

In the meantime I am to stop chemotherapy and to start to wean myself off the Prednisolene by dropping down to 5mg per day and then 5mg on alternate days.

There could be possible side effects with stopping the Prednisolene which include dizziness and lethargy.  It would also seem that the Prednisolene helps make you feel better and raises your blood pressure slightly.

So maybe an interesting couple of weeks ahead.

Overall I am disappointed to have the chemo stopped but I think I knew it wasn’t working as my PSA had continued to rise so much and I was not getting many side effects from it.

I am worried about what the future may hold but will try to remain positive and keep doing things although it’s difficult to book holidays when you don’t know when your next treatment is going to be.

First Treatment of the Year – Not

After the scans on Friday it’s back to London and UCLH today for my first treatment of the year or treatment number 8 of the trial.

As always an early start although this time we drove to the station as opposed to getting a taxi although it is £9 for parking which is half the cost of 2 taxis.

Arrived on time at the hospital and went to see Danny the trial nurse to pick up the vials for the trial bloods. So with the 5 vials for the trial and 5 as part of the normal blood test a total of 10 will be taken.

As soon as my number was called I warned the plebotomist that it took 5 goes to get the cannula in last week and I hoped she could do better.

And she was very good, a quick look at my veins and she selected my right inner elbow.

Needle went straight in first time and soon my blood was flowing.

Then it was back up to see Danny and get my observations done, blood pressure was good, that of a 25 year old !

I chatted to Danny about what I had heard about a cannulation department but he didn’t know about it so I may have to do a little research on that, maybe a quick recce today.

For now it’s time to sit and wait for my outpatients appointment…….

Well that didn’t go as expected!

Dr Linch asked how I was and if anything had changed, I said I had a little bit of blurred vision in my right eye, this prompted a series of questions and concerned looks from both Dr Linch and Dr Flanagan.

The upshot was that I was referred to Moorfields Eye Hospital for further eye checks to try and identify whether the eye problem was caused by the drugs or some other issue and so treatment was postponed.

I will also be sent for a MRI of my head to see if there are any issues there.

I also mentioned that the GP had sent me for a chest xray due to a cough and that came back showing thinning bones which might indicate Osteoporosis and that I had a Dexascan booked for further checks.

Dr Linch had some bad news for me in that it looked like there was some disease progression. A lesion on a lymph node (if I understood correctly) had grown from 1.2cm to 1.4cm.

He was concerned that my PSA had risen to 33 last month, todays results were not in.

I am sure there were other thing but my mind was a bit blurred by then!

There was a brief discussion of other future treatments but for now I would continue on the immunotherapy.

So after a quick breakfast at Cafe Valerie we jumped in a taxi to Moorfields.

Check in was fairly quick although the form I was asked to complete clearly indicates that there are a lot of visitors from other countries to the hospital.

I was quickly seen by a triage nurse where I handed over the letter Dr Flanagan had written.

The Triage Nurse took a few details and then we were sent to a second waiting room.

Once again I was called almost straight away to see another nurse who did further tests, she got me to read from a chart, test my eye pressure and examined my eyes.

I was then sent back to the waiting room and told to wait for the doctor. Could be a 2 hour wait!

About 90 minutes later we were called forward by a doctor who carried out the following tests.

Visual Acuity

Slit Lamp Examination

Fundoscopy

And I was sent to have my eye photographed.

And it turns out I have Vitreous Detachment! Which could be age related!!!!!!

No treatment for it and my eyes and brain should adapt over a fairly short period of time.

So that was kind of good news!

But the warm glow didn’t last long!

I gave Dr Flanagan a quick call to update her and she was pleased. But she had my PSA result which was now 51 up from 33 last month. So on top of the earlier news about the lesion it seems that the cancer is once again active and not responding to immunotherapy.

So I am back next week for treatment, maybe, and to discuss future treatment options.

Right now I don’t know what to think, I feel like I am being painted into a corner with an ever decreasing list of options.

That said I will remain positive and keep on fighting.

Back again

Well it has been a while since I have had anything to report as I am now into more of a routine of visits every 4 weeks which is great after the rush of the summer when it felt like I was at the hospital every week.

Overall I have been pretty well which is great.

As usual I started the day with a blood test. In what seems to be the norm the plebotomist try to take blood from my hand but to no avail so she tried again in my inner elbow with more luck this time.

With blood done it was then upstairs to see the research nurses who took the normal observations.

My blood pressure was a bit higher than normal, not sure why?

So we waited a few minutes snd then took another with better results.

I still find it amazing how your blood pressure can change over the course of a few minutes. I think it may have been the excitement of the blood test that raised the pressure!

Having had my observations done it was not a long wait to see the oncologist, we saw Dr Mark Linch today who gave a quick update on where we were and he also gave me a quick check over. Overall we were not with him for long as the trial is just starting to tick over now.

After seeing Mark we headed to Patisserie Valerie for a late breakfast and to meet a friend.

We then had a walk down Tottenham Court Road where Barbara picked up a few bits and pieces.

We got back to the Macmillan Cancer Centre at about 1pm with our lunch. Barbara was keen to get on with a jigsaw and I had a meeting with someone who was going to be a new Patient Research Ambassador (PRA).

Graeme the PRA turned up at about 2pm and we had a chat about what is covered by the PRA’s and the sort of things I did. I hope he found it helpful.

Time then dragged, my appointment time for treatment was 2pm but that came and went……………………

Come about 4pm I had a canula fitted by Samson who is very good but it was still another wait until 5pm before the Nivolumab turned up and I was finally under way.

The treatment went well and was rather unremarkable.

We spoke to lots of patients who all had interesting stories to tell and we also learnt how to make a Christmas Tree out of a book.

It was 7pm before we left the Cancer Centre, it felt like a very long day and I was shattered. Fortunately the trains were kind to us and we were soon home.

The Same But Different

Off to London again today for my outpatients appointment followed by treatment so very the normal routine.

The difference is I am also doing a talk today on how to improve the patient experience while on trials. This is part of a training day for NHS staff called Becoming Research Active, I am giving the patients view point.

The day started with a cracking sunrise, with te sun creating stunning patterns on the clouds.

Arrived on time for blood tests and was first in the queue. Helen the plebotomist tried to take blood from the inside of my left elbow but couldn’t find the vein and it trying to find it I was squiming in pain.

So she then went for a vein in my right hand which went much smoother. I hope my vein don’t withdraw anymore as I don’t really want them taking blood from my feet or neck!

Once blood was done it was off to see Emily the research nurse who did my observations.

Weight 104kg which was the same as last time.

Blood Pressure was 118/80 with pulse of 80.

Then it was time to wait for my outpatients appointment……..

Time passed and then we were called forward by someone we had not seen before. Dr Cliona Flanagan introduced herself and we started the appointment.

It was good news and bad news!

The results from my bone scan and CT scan were in and it showed that I had a small module of cancer on a lymph node in my Pelvic region and it also looked like I had a spot on my lung. These were both classified as new which is a bit worrying.

In fact it’s very worrying and makes me wonder if the immunotherapy is working or not. The doctor said it was too early to tell.

My blood test was showing everything as normal apart from the AST which is the liver function; this had gone up slightly from 39 to 41. 40 is the top of the normal range so just slightly over. I hope this is not going to continue to climb and be an indication of liver toxicity caused by the immunotherapy!

On the plus side my PSA had dropped to 18.20 from 23.50 previously which is good news and I hope this is the start of a downward trend.

The CT scan also showed a trace amount of pericardial fluid around my heart which which is nothing to worry about.

The good thing about this visit was that the doctor spent time to show me the CT scan and the Bone Scan which was very interesting. I will talk more about these in another post.

The doctor gave me a check over and declared that I was fit for treatment in the afternoon which was more good news.

So after the appointment we headed to Oxford Street and had breakfast at Cafe’ Valerie which was very nice followed by some retail therapy although we didn’t buy anything.

By 1pm we had arrived at Park Crescent where I was going to do a small talk as part of ‘Becoming Research Active’ course that was being run, I was to give the patients perspective of being on a trial.

P Talk

Overall I think it went well and I enjoyed giving the talk.

Before long we were back at the cancer centre for my treatment which went well and without any hiccups and come about 5pm we were on our way home.

I was feeling good after the treatment which was good as last time I felt really rough. I am hoping treatments will get easier now and we will get into a routine.

My next appointment is not for four weeks now, feels like a holiday!!!

Kelly the student doctor spent time with us today and we spent lots of time talking. It was very interesting hearing about her training and some of the challenges she faces.

What will I write about over the next four weeks!!!

I will be glowing tonight!

Back on the train to London again this morning on another trip to UCLH, this time for a CT Scan followed by a Bone Scan. The reason I will be glowing tonight is a reference to the fact that the Bone Scan is done in the Nuclear Medicine department and you are injected with a small amount of radioactive material.

This is all being done as part of the Neptunes trial that I am on.

The imaging department were very efficient: I arrived on time and barely had time to sit down before I was called and asked to get changed into a rather fetching gown!

Once changed it was into the scanning room where I was fitted with a cannula so they could inject the contrasting fluid.

Two scans were done without using the fluid and then the fluid was injected and further two scans done.

It was all over quickly and then it was time for brekkie, I went healthy and opted for porridge with banana.

With my hunger satisfied I headed to the fifth floor and the Nuclear Medicine dept, I was about an hour early but what else could I do?

Despite arriving early I still had a long wait, it took about one hour and ten minutes before I was seen.

Then, as always it was pretty quick, I already had a cannula fitted so no need for that and quicky an adaptor was connected to the cannula and then a syringe of saline and the syringe of the radioactive material.

A few pumps on each and I could feel the solution moving up my arm.

The syringes were removed along the adaptor and then out came the cannula.

It was then time for another wait, 3 hours this time while the radioactive material does it stuff.

What it should be doing is moving round my body and attaching to cancerous cells which can then be seen by the scanner.

So I wandered around for a while……

Come 1pm I was back in Nuclear Medicine and before long I was collected by Emma who was going to conduct the scan.

I laid down and was strapped in to prevent movement, the scan would take 18 minutes and 2 seconds based on my height.

So now I can say I am 18 minutes and 2 seconds tall 🤔😉.

The scanner moved really close to my face, a good job I was not claustrophobic!

I kept my eyes closed throughout the scan in the hope that the time would go quicker. And the ceiling was not interesting to look at.

Emma gave a countdown, the halfway point, and 5 mins to go which helped break up the time.

Before long I was heading home, as always you get no feedback, I have to wait until I see the doctor on the 14th.

For the most part the service I got today was good, it’s just a pity I had to travel so far as both of the scans are available local to me!

A Chilly Start

A chilly start to the day today with a heavy frost on the cars. When I last went to the hospital the last remains of summer were there to keep me warm.

This morning it was down to a cup of tea and a blueberry muffin!

Hopefully just a quick trip to the hospital today with the main purpose to have a blood test to check that my liver is still stable with no toxicity from the Nivolumab two weeks ago.

I will need to wait around for results just in case the results are not good and I need something to treat the liver.

Fingers crossed all will be ok for treatment in two weeks.

After picking up the trial vials from Emily it was off down to Blood Tests for blood tests, we didn’t have long to wait before my number was called and I was in the cubicle with a new plebotomist.

He had a quick look at my arms and decided my veins in my arms were not very good so he opted for my left hand.

He was very good at getting the needle in, quick and painless.

So far so good.

But while the needle was in the flow was not so good.

After filling the five vials for the blood test he decided that we needed to get another line in to fill up the trial vials.

So a double needle job this morning!

Fortunately he was very good at getting the needle in and so I didn’t do too much squirming around.

You can see from the photo above all the things I am being tested for, that is one of the good things about being on a trial.

I still need to learn what all the different tests are, a project for another day.

So we had an hour or so to wait for the blood test results to come back so what better to do than go for breakfast. We decided to treat ourselves and choose to go to Patisserie Valerie for breakfast.

I was feeling in a good mood and Barbara thought she would take my picture!

I was having none of it!!!!

Once we returned to the Macmillan Cancer Centre we were quickly seen by Dr Linch. We had a good chat and he had some good news about the trial.

A report had been published about a similar trial in the USA called Checkpoint 650 and it said that a lot of the participants had responded well to the trial. I had seen a headline about this but had not realised that is was a sister trial.

He gave a quick update on the Neptunes trial and said that one of the other participants had spent a week in hospital due to side effects so I count myself lucky with the ones I had.

He gave me an examination which was all ok and we reviewed my health since my last visit.

The results of the blood test were not in and we were asked to return in an hour.

We did so and was seen by Fernando the Clinical Nurse Specialist who said my bloods and especially my liver were ok, a few were a little high but nothing to worry about.

So the good news is I dont need to take anything else and we could head home.

Overall a positive day and I am happy with the outcome 😁.

Once I got home I had a couple of hours to wait then it was off to the Doctors Surgery to see Nurse Bonnie for my Prostap (Hormone Therapy) injection which considering that it is a big needle going in my stomach, went very well.

Back in 12 weeks for that again.