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.

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.

It’s been a while

Yep it’s been a while since I have written a post and the reason for that is I was a bit down after being told that my cancer had spread more around my bones.

I was told told that I had four new lesions, 2 on my ribs, one on my spine and one in my shoulder.  What is amazing is that these all developed over a nine week period as I was having a bone scan every nine weeks as part of the Neptunes trial.

The immediate action of the medical team was to take me off the Neptunes Trial as the protocol dictates that patients should leave the trial if they show signs of disease progression.

The next topic of conversation was what to do next?

There was a long conversation but the upshot of it all was that I was to have another 6 rounds of chemotherapy with Cabazitaxel this time rather than the Docetaxel  I had last time.  There was then talk of perhaps having Radium 223 after that, whenever that may be!

There was also talk of another trial with Lutetium 177, which is a radioactive treatment which attacks cancer cells.  Unfortunately this trial is not currently recruiting and so I can not even try and get on it.

Of course all of this was a real blow to both Barbara and I, on the face of it it looked like the Neptunes trial was working although my PSA had risen I had also had reactions that suggested things were going in the right direction.

Things were going so well we had booked a holiday to Jamaica for March between treatments.

This meant that the chemotherapy had to to be fitted around the holiday and as they didn’t want me going to Jamaica with a weakened immune system I had a six week break between treatment 1 and treatment 2.

Treatment 1 went OK with no real side effects. Treatment to, the day after our return from Jamaica went well but I have since had some diarrhoea and have felt more tired than usual.

What will treatment 3 bring?

So that is a brief summary of the last few months.

In myself, in my mind I feel better, well at least consciously, but I am having a really tough time sleeping, I feel tired when going to bed but my mind gets so active I just cannot sleep.  I don’t lie there thinking about cancer or my situation just everything else, my mind screams really loud at me.

At times I take sleeping tablets which sometimes help and mean I get a reasonable nights sleep, but I can’t keep taking them or they will stop working.

But at least I am very well and getting on with things, next chemo in a couple of weeks.

Watch this space 🙂

Neptunes No More

Not one of my best days today, I was officially taken off the Immunotherapy Trial (Neptunes) as I was showing signs of disease progression.

We arrived at the hospital at 8am and went straight for a blood test which was surprisingly quick and easy.

We then went upstairs to see Danny the trial nurse and he said that he did not need to see me, strange!

We waited a short while and then we were collected by Dr Flanagan who had a pensive look on her face.

We then made our way into one of the consulting rooms, she asked how I was feeling and I said fine, she asked me to recap on the eye situation (Vitreous Detachment).

She then told me that I was to be taken off the trial as I showed signs of disease progression on the bone scans I had on 4th Jan.

The bone scan showed 4 new lesions.

Left 4th rib

Right 7th rib

Right Shoulder

Lower spine

Below is an image(not great quality). The dark patches show cancerous lesions apart from the patch between my hips which is my bladder.

bone scan 4th jan 2019

This was shattering news to me that there had been so much progression although she did not know the size of the lesions.

She asked me if I had had a chance to look at the different treatment options she had mentioned the previous week.

We then had a discussion about each of them but I think they had already made their decision.

We talked about the following.

Docetaxel

Cabazitaxel

Radium 223

Lutetium Trail

and the side effects for all of these but the upshot was they wanted to put me on Cabazitaxel which is a chemotherapy.

The challenge was that we have booked a holiday late Feb/early March and no one wanted to wait until march before starting chemo so we came to a compromise that I would have one treatment next week which should give time for me to recover from any side effects prior to going on holiday whilst also starting to work on the cancer.

So it’s chemo next Tuesday followed by another bone scan in 4 weeks.

So while I am happy that we now have a treatment plan I am not happy to be in this situation, I had great hopes for the Neptunes trial and really hoped that immunotherapy was the way forward for me. I feel I have gone from potential cure to just trying to hold back cancer progression.

So I need to pull myself together and get on with things, I need to turn that frown upside down.

It’s hard but I will get there.

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.

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.