Vertebroplasty Day One

Today is admissions day for my Vertebroplasty procedure, it all feels a little rushed having just had the phone call yesterday.

I had a fairly busy morning what with walking Teddy and then getting him to the dog sitter and then before long I was picking up Barbara and heading to the train station.

A comfortable train ride and a taxi saw us arriving at the National Hospital for Neurology and Neurosurgery where we made our way to the Queen Anne ward, my home for the next couple of nights.

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I was given a bed in a small section of the ward where it looked like there would be four of us.

No real instructions were given on what to do and we were left to our own devices.

Eventually I was given a hospital wrist band and found out that I would have an X-Ray and a CT Scan.

After another wait a porter arrived and I was wheeled to the imaging department, in many ways it was good to have a porter as the hospital was a rabbit warren of corridors and rooms.

We arrived to the chorus of an intermittent fire alarm, which meant stay in place, there was some confusion and fire marshal’s came and went.

Silence.

Thankfully and it seemed the whole hospital gave a grateful sigh!

X-Ray first in the same room I had the X-Ray in December and then the CT Scan and before long we were heading back upstairs to the ward.

It would seem that there was now nothing to be done but wait until the morning so I started to settle in more.

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Barbara headed off at about 6.30 pm by which time I was in my pyjama’s and listening to music.

I had my blood pressure done a couple of times which was a little high, I felt fine but is probably down to pre-op nerves.

I also signed consent forms and so on, blood tests, ECG and there was me hoping for some “Me Time”!

Before long I was ready for bed and hoped for a good nights sleep, alas it wasn’t to be what with call alarms being pressed through the night, my neighbour snoring for England and nurses clomping about it proved to be a restless night!

Still I would get a good sleep in theatre………….

 

 

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.

Hospital Day 2

Well I awoke feeling fairly tired after a tired and restless night on the Ward at UCLH.  What with all the beeping of IV Pumps, staff moving around and argumentative patients and on top of that my own restless mind, it was never going to be a good night.  I also had Dexamethasone late in the evening which would keep me awake.

I was also supposed to stay on my back all the time and that was starting to cause me some backache or perhaps I should say, add to my back pain.

Still it was morning and I was wondering what the day would bring.

Before long the tea trolley arrived and I took a welcome cup of tea.

As I was immobilised I had to use a bottle to wee which wasn’t easy but I coped!

Tea was soon followed by breakfast and I opted for toast and marmalade with more tea.

I was feeling rough and really wanted to have a wash and clean my teeth, how was this going to work?

I was soon hooked up to the drip again and infused with some Dexamethasone, I asked about a wash and was told I would be having a bed bath, can’t wait!!!

Come around 9am Barbara turned up and I was very pleased to see her and she brought Tea and Cake with her, along with a change of clothes and other supplies from home.

Then it was time for my bed bath and time to wave bye bye to the last of my dignity, to be fair the people who did the bed bath were very good and thorough although by the end of it my hair looked like Dr Emmet Brown from the Back To The Future Films!

I was then seen by one of the Oncology Registrars, Dr Yin whom I had seen in clinic before, so he was familiar with my case.  He asked how I was and check me over, he said Dr Linch would be around later in the afternoon and that I was going to be scheduled for radiotherapy but he didn’t know when that would be.

He also said that the MRI scan looked good and while I had a lesion inside my spine it was not putting pressure on the spinal cord and the purpose of the radiotherapy would be to reduce that lesion even more so that it would not grow.  The radiotherapy and dexamethasone should both work towards keeping it small.

It was turning into a busy morning.

I was then visited by a doctor from the radiotherapy team who talk me through the radiotherapy process and got me to sign a consent form.  My takeaway from this meeting was that they were going to start radiotherapy today and for five days and so I assumed I would be staying in for 5 days and started making plans to do that.

Someone would be sent up to take me down to the radiotherapy department later in the day.

Lunch arrived, tuna salad which looked quite nice and wouldn’t get cold as I couldn’t eat it then as I was once more hooked up to the drip for my second Dexamethasone infusion.

Some good news came in that I was no longer under spinal cord compression protocol and no longer needed to be kept immobilised which was great news, it meant I could sit and and walk about, first stop the loo!

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Initially I was a bit wobbly, but I think it was just because I had been immobilised for so long, I used my stick to help me get around and it was good to stretch my legs.  I would also be able to sit up and eat my lunch and not wear some of it like I did last night!

Lunch done I was soon picked up by a porter who took me down to radiotherapy for the planning scan.

I had been through this before so I knew the procedure, they would be doing a CT Scan and marking me up for the treatment, I gained another tattoo just a small dot on my chest, but it is now my third.

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It was at the end of the planning session that I learnt that I would not be having treatment until the 16th, contrary to what I thought I had been told earlier, what was going on?

Back on the 10th floor I just sat down when a physiotherapist turned up to assess me, She gave me a quick examination and asked lots of questions.  We then went for a little walk so she could assess me, and she offered me advice on using the walking stick, she also said she could provide me with another stick which might help.

On the way back I was ambushed by Dr Linch and his team, there was about six of them, we had a chat about how I was, and he said I could be discharged and go home.

Wow, I was thinking I would be in for a few days but was pleased to be going home.

He said that while I clinically had cord compression, I fell outside the parameters for the cord compression protocol which was good, and the aim was to keep me there.

I would have the radiotherapy next week and then see him again the following week for a catch up and a review.

I was now time to plan a quick escape and get home although the hospital had other ideas!!

We quickly gathered my bits together and I got changed, we were told we would go down to the discharge lounge where they would sort out my prescription etc.

This took ages and ages as we waited for the prescription to be fulfilled, we were told it was because I would be getting a controlled drug, morphine.  But still why does it take so long!

Finally just after 6pm we set off home in a taxi, I couldn’t face the tube!

We got home and I felt I would now be able to relax, it had been a long couple of days.

I must stay that all the staff at the hospital were great, kind and caring, there was confusion between departments and at time I felt I was kept in the dark but I guess it was an evolving situation.

Hospital Dinners!

Well today has been a bit of a day with me being admitted into UCLH Hospital!

Not what I expected when I set off this morning for my Oncology Outpatients Appointment. I was expecting a review and an update on all the scans I had had and to find out about the Vision Trial.

I did find out about the Vision Trial and while I was accepted onto the trial, I had the right levels of PSMA, I had been randomised into the Control Group, not what I wanted to hear.

Being in the control group means I would get normal ‘Standard of Care’, which I would get treatment that is already in use and not something cutting edge.

For me this would mean Steroids, Dexamethasone most likely.

I know I am no expert on this but my gut feeling was that the Vision trial and Lutetium 177 was the way forward for me.

But for now there were other things to worry about.

As soon as we started talking about my leg pain and Polymyalgia then the concern was raised that it might be caused by Spinal Cord Compression, this is where cancer in the spine presses on the nerves running through the spine causes pain and weakness.

So the immediate thing to do was to get a MRI of the spine so it could be better reviewed.

I was also surprised to hear that thry were going to admit me into the hospital do they could keep a close eye on me.

I would also be immobilised and would have to stay flat on my back!

This meant I was lifted by 6 people from bed to bed and moved around the hospital by porters.

This was all a very big shock as I had travelled to the hospital and had been walking around. I also had expected to go home.

What was I going to wear!

There was some confusion……

I was moved to the 10th floor where the cancer ward is and moved onto another bed, where I spent the next few hours.

It turns out I should have been taken straight to Imaging for the MRI.

So it was about 7.30 when I finally went in for my MRI having been lifted another 2 times!In the meantime I had my first hospital dinner which was too bad 😁.

The MRI was 45 minutes of discomfort and loud noises, I was glad when it was over.

Barbara had been with me all through the day and had got me a small hospital survival kit.

I was sad when it was time for her to go and look forward to seeing her tomorrow.

Since returning to the ward I have been hooked up to a drip and given some Dexamethasone and some pain killers.

I lie here now in my hospital bed listening to the noises of the ward.

We I sleep I don’t know, the Dexamethasone might have other ideas and my mind is spinning but I need to give it a try.

Apologies for any typos, it’s been a bit of a day!

Back again

Seems like it was only yesterday since I was here, well it was, I was here for a blood test.

So now waiting with slight apprehension as to what that blood test may reveal.

Two weeks ago my PSA was 481 up from 398 three weeks before that.

I am also awaiting the results of the CT Scan I had on the 12th. What would that reveal?

And I am hoping that I will to hear about the vision trial and whether I can get on it and what future treatment may look like.

So an important appointment today.

We have a slightly later appointment today, 10am although it is nearly 1030 already!

And then it was 11am before we finally saw a doctor, today we saw Professor Gert Attard.

He started by talking about the Vision Trial (I will talk more about the trial in a later post), and gave me the information sheet and consent form to take away and read, which is great news, he said I should come back in two weeks, complete the consent form and then I would have a PSMA PET done to confirm I was eligible for the trial.

All I have to do know is to keep my fingers crossed that I get onto the active arm of the trial and not the control group.

He also talked about another trial and getting consent done for that so I can be tested for it, the trial name escapes me at this time but is a study looking at PARP Inhibitors which is linked to an abnormality in cancer cells. I need to understand this trial more and will try and write a little more about it as I understand it.

So overall that is all good news.

My PSA has also stayed fairly steady and is now at 498 up from 481 two weeks ago, so a minor increase and hopefully an indication that the big rise in PSA is steadying out.

Fingers crossed.

He also talked about the CT Scan that I had on the 12th and said that the tumours on my lymph nodes around my pelvis was about 30% larger, which is a bit worrying! Hopefully with a new trial on the horizon I will have plenty of scans and they will keep an eye on these tumours.

I do wonder if the Cabazitaxel Chemotherapy or the Prednisolone steroid I was on did something that triggered the rise in my PSA, however I suspect we will never know, I just hope it stays steady now.

We had a brief chat about the pain I suffered last week and how I managed it and I told him that I had taken some cannabis oil which seemed to stop the pain straight away. Initially I think he was surprised and then interested in my response to it.

I do think more research needs to be done around cannabis oil and it’s benefits in pain relief/management but it won’t be funded by ‘big pharma’ that is for sure.

So for me it’s back in 2 weeks to complete the Vision Trail paperwork and have blood tests done and then the PSMA PET should follow quickly after that and then it should be all go for the first cycle of treatment although I cannot seeing that being for a month or so, maybe longer.

Overall I feel more optimistic than I have over the last few weeks and really hope that I get onto the active arm of the trial.

Please keep your fingers crossed for me.

CT Scan Sunday 12 May

Unusual for a Sunday but we are heading to UCLH for a CT Scan today.

Arrived slightly early for my 1315 appointment and was called in straight away.

I got changed quickly, the cannula was fitted and before I knew it I was in the scanner and out again.

There are some advantages to visiting the hospital on Sunday, that was very quick and easy.

As a treat because it was a Sunday we decided to treat ourselves to a Tapas lunch and so we headed to Goodge Street where there is a plain looking tapas restaurant called The Salt Yard.

But go inside because the food is amazing!

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.

Cabazitaxel 4

Back at UCLH once more for my 4th cycle of chemo but also for a review of my PSA.

I do feel a little apprehensive about what I might hear although I am also hoping for good news that my PSA has gone down and that it looks like the chemo is starting to work.

We had a later appointment today so I was there about 12 for my 1 o’clock appointment.

I was seen soon after 1pm which was good.

As soon as I saw the doctor I ask what my PSA was and he answered in a vague way stating it was in the three hundreds, I asked if he could be more precise? He had to go away and find the information.

When he returned he said my PSA was 398, up from 298 3 weeks ago and from 61 back in January. For me this is not good news although he seemed unconcerned about it.

I see this as a ticking time bomb, while I am fit and well at the moment something is obviously going on inside me and I feel I need to get on top of it before it gets too far gone.

It also seems to indicate that the Cabazitaxel is not working or doing what it should be doing.

I do wonder if one of the reason I am having a fairly smooth ride with the Cabazitaxel is because it is not doing anything and is not having enough impact on my body.

The appointment was fairly brief and the doctor said he would book me in for a CT Scan and a Bone Scan so we can see if there is any disease progression. So I will have to wait for these to come through now.

After the appointment we checked in with the chemo ward and had a chat with Bec’s who runs the team, we said we would go for some lunch and asked her if she would like a coffee, which she would, always good to keep people sweet 😉

After lunch we return to the chemo ward, Barbara was desperate to get going with a jigsaw.

Time passed and jigsaw one was done.

Mid way through number 2 I had my cannula fitted, the cannula was fitted into my forearm which was a first for me.

I was given the pre-meds and then before too long I was hooked up to the Cabazitaxel.

We spent the time finishing the second jigsaw and Barbara started a third!!!

I was starting to feel tired by the time we finished, a combination of the chemo and a long day I think.

We left the hospital just after 7pm and headed for the tube so we could get home.

How do you keep a positive mindset when you are feeling apprehensive, I feel I am always waiting for the next appointment. The worry does affect my sleeping but in the daytime there are lots of distractions and I could always get hold of myself and say “get a grip!”

So now I wait to hear when the scan will happen, soon I hope.

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.

New Year New Start!

Well Christmas and New Year have passed and I am back at UCLH again, for scans this time. A CT Scan followed by a Bone Scan.

So an early start, up at 6am, shower then walk the dog, not too cold considering the forecast.

Dropped Barbara off in Stansted and then drove to the station. Hoping to use less taxis this year although the car park was £11.

The train was not too busy, not everyone is back at work yet.

And before I knew it I was sat in the waiting room in the imaging department.

I am not allowed to eat for 3 hours prior to CT scan so looking forward to breakfast and a cup of tea!

Well that was torture! 5 goes to get the cannula in for the CT scan, seems my veins are getting harder to get into.

I did learn that there is a department that does cannulation for patients with difficult veins so I think I will ask to be referred there for the next set of scans.

Breakfast was relief and time to catch my breath before the bone scan. I opted for the healthy option and went for porridge with a banana.

I went up to the 5th floor where Nuclear Medicine is located a little early in the hope I would be seen early, it was not to be and I finally got my 1040 appointment at about 1115.

Having a cannula already fitted speeds things up and it wasn’t long before I was hooked up to the syringe with the radioactive source in it and another with a flush.

Both syringes are pushed in turn with a small amount of the radioactive source being injected followed by a small amount of the flush. This is repeated several times until every last drop is in my veins.

The cannula is removed and I am asked to return at 1315 for the scan.

As always it’s now time to find something to do which is a little harder than the summer time as sitting in the park is not so attractive!

Time passes slowly and eventually it is time to go back up to the 5th floor, I am a little early but you never know…….

And lo and behold I am called forward early and in I go. The scan takes about 18 minutes and I doze as the scanner moves slowly inches from my nose.

Just as I start to move into a deeper sleep state I am told that the scan is complete and I can go.

So now it is time to head home.

I hope the results are in before my outpatients appointment on Wednesday.