Neurologist Appointment & Scan

Today is a two hospital day, first stop is the National Hospital for Neurology and Neurosurgery to see a consultant about my back and then I am off just down the road to The London Clinic for my post treatment scan for the Lutetium treatment I had on Tuesday.

So after a train ride and a taxi I arrived at my first destination and checked in. I didn’t have to wait long and I was told to go and get an X-Ray done.

So back outside and down the road to another entrance where I sort out directions to the X-Ray department which like in a lot of hospitals was downstairs.

On arrival I wait a few minutes and was then asked to change into a hospital robe which I did.

The X-Ray was to be of my whole spine and so I would be standing for the X-Ray. After some careful positioning I was given the thumbs up and the room emptied and the machine whirled. First picture done I was then turned sideways and another image was taken.

Then it was a quick case of getting dressed again and I made my way back to the waiting room.

Two minutes later I was called and met my the consultant’s CNS (Clinical Nurse Specialist). She would be carrying out the consultation.

She started by asking lots of questions about how I was, what had happened and so on.  She showed me the X-Ray of my spine, please see picture below with the circle around the damaged (Wedge Shaped) T12 vertebrae.

Spine Close Up

I must say that it was a little scary seeing how compressed the vertebrae was and while she said it would reform it’s shape a little and that the disc’s above and below would grow to fill in the gap it still causes me great concern.  As does the fact that the vertebrae above and below are at high risk of a similar type on fracture.  I need to be very careful.

The CNS gave me an examination and a check over.

She went on to say that the approach to healing was time and rest and that I would need to wear the spinal brace for at least 3 months.  There was no surgery that could be done and to some extent I am relieved that surgery is not on the agenda.

I will just have to be patient.

After the consultation was finished I made my way over the Devonshire Place and the London Clinic for my Lutetium Post Treatment Scan.  I am getting to be an old hat at this now and knew exactly where to go.

I didn’t have to wait long to be called in.  Getting on the scanner bed was a slow process due to the pain in my back but it was nothing like getting off after 30 minutes of lying on my back.  I needed help from the staff and I asked them to move me slowly.

On my way out I bumped into my Consultant who said she had seen the blood test and was pleased with the results.  She was going to review the image from the scan.

She later text me and said that the scan image was even better than last time and that some trouble spots shown previously have disappeared completely.  Together with the fall in PSA she felt this was really encouraging.

This is of course excellent news and the best Christmas present I could get and really this is only after 2 treatments and hopefully treatments 3 and 4 will help even more.

Merry Christmas Everyone.

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 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!

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;-)

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.

Bone Scan

Back to London today for a Bone Scan at UCLH.

Got the train at 10.39 and was at the hospital just in time for my appointment.

I didn’t have long to wait until I was called in for the injection, I was welcomed by a trainee nurse who asked me all the routine questions. She then asked if I had any problems having cannula’s put in.  She said she was going to get one of the regular nurses to put the cannula in.

I said that she should do it as it was the way to learn.

She took on the challenge and did a good job.

Before long I was injected with the radioactive fluid and told to come back at 14.50 for the scan.

So I had 3 hours to kill…………………..

So I wondered around for a while, looked in a few shops and had some lunch before heading back to the hospital.

Soon after 14.50 I was called forward for the scan and about 20 minutes later it was all done.

I would get the results the following week at my oncology outpatients appointment!

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.

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.

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.

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!!!