Blood Test Results

Well, it took a week but I finally got my blood test results back from the blood test I had on 8th March.  Not sure why it took so long but I suspect that it took time to be reviewed and processed at the GP’s Surgery.

And there is good news and bad news!

The bad news is that my PSA had gone up from 163 to 241, a rise of 78 when I was expecting it to go down following on from the Lutetium treatment.  I had really hoped that the Lutetium would knock it down as it had done in the past.

On the plus side, for the most part I feel fit and healthy.

I have forwarded the results onto UCLH and will see what they say on the 24th March when I have my next outpatients call.

The rest of my blood work looked ok to me apart from a few things which looked a little low or a little high in one case.

Serum calcium level 2.11 mmol/L [2.2 – 2.6]

Haemoglobin concentration 116 g/L [130.0 – 180.0]

Red blood cell count 4.29 10*12/L [4.5 – 5.5]

Or High

Serum cholesterol/HDL ratio 4.46 [< 4.0]

Now I don’t know what this means, but it looks like my blood count is down a little and that maybe due to the Lutetium.

I don’t know how this may affect the thinking around having another Lutetium Treatment in April but for myself I think it would be worth it but of course I need to listen to advice.

I have done a graph to help track my PSA, I think it tells an interesting story.  It shows that the Docetaxel that I had first of all really made a great impact as did the first set of Lutetium treatments that I had.

Everything else has been less effective although there is nothing that shows what effect the Hormone Therapy may or may not be having as I have been on that consistently since being first diagnosed.

I do wonder how long it took my PSA to reach 226 when I was first diagnosed and how that could have been caught earlier, I am sure it didn’t climb to 226 overnight and probably took a few years or more.

I do think that had I been tested early, perhaps when I was 50 then the disease may have been caught earlier and I would have been a much simpler case to treat.

But that is hindsight and for now I need to focus on treating the current problem and on staying fit and healthy.

Post Therapy Scan and Side Effects

So I am writing this a little after the event as I have been a little poorly.

Following on from my Lutetium Treatment on the 19th February, I had a post therapy scan on Monday 22nd February, which all went fine and was as expected.

However, on the way home I started to feel a little tired and achy.  I got home about midday and had some lunch and spent most of the afternoon on the sofa not doing much at all.

Come 8pm I was feeling really fatigued and was experiencing a lot of pain especially in my back, hips, and thighs.  And so, I took some extra pain killers and went to bed. 

And while I slept through, I felt really tired and fatigued come morning and could hardly move, I needed assistance getting to the bathroom.  So I stayed in bed all morning and eventually got up at 1pm in the afternoon.  I tried to have a shower but the pain made me feel nauseous and so I gave that a miss and I had to ask my wife to help me get dressed and help me downstairs.

She was an angel and made me some lunch, which I ate and then I spent the rest of the day taking pain killers and resting on the sofa.  I slept most of it.

My conclusion was that I was suffering from some kind of Radiation Sickness from the Lutetium Treatment.  This was unusual as I hadn’t suffered any side effects after treatment before.  I also surmised that as I was given 4mg of Dexamethasone prior to the treatment this had helped me through the weekend and as it started to wear off is when I started to suffer.

And so the week continued like this, I was in pain and feeling really fatigued, it took all my efforts to get up in the morning and then all I could do was rest on the sofa.  I wasn’t able to walk the dog or do any cooking or anything.

My wife really stepped up and did everything as well as working; in many ways we were fortunate that she was working from home and was around to look after me.

By Wednesday I had text the consultant who administered the Lutetium and she called me back and we discussed what was going on. 

She pretty much agreed with my conclusion although didn’t go as far as calling it radiation sickness, more side effects.

We also agreed a plan of action which was for me to take extra Dexamethasone to give me a boost, I was lucky that I had some spare in the house.  So for three days I took 2mg of Dexamethasone (my normal dose is 0.5mg) and then for another 3 days I took 1mg before reverting back to my normal dose.

This extra dexamethasone really helped and gave me a boost, it also helped get me moving again although it took about a day to take effect.

So that was a really rough week and as I say it was unusual for me to have any side effects from the lutetium.  Next time I have some, which is due in April I will ask for extra Dexamethasone to see me through the week following the treatment and hope that keeps the worst effects away.

Going forward I have an Oncology Outpatients appointment and of course another treatment at the start of April, I will try and get a blood test done so we can see if the treatment has any effect.

Lutetium Treatment No.7

Back at The London Clinic for what is my 7th Lutetium treatment.

The treatment had been delayed from the morning until the afternoon and so I was asked to be there for 1pm. The roads were clear and we made good time and so I arrived about 12.30.

Check in included a temperature check and hand sanitising.  I then had a chance to grab a Flat White coffee, a real treat 😋.

Room 5, a room I had been in before.

I was shown to my room and then all the usual things started to happen, blood and observations were done. I had a cannula fitted and the nurse did a great job of getting it in first time which was a result.

Blood pressure was good.
A neat job.

And I ordered a sandwich and a health drink for lunch.

Lunch is served in disposable containers due to the risk of contamination from radiation.

I was also hooked up to Saline solution to increase my hydration and given an injection of 4mg of Dexamethasone to help prevent bone pain.

Lunch came and was eaten and I waited.

The doctor arrived and we chatted things through about how I was and so on.

I asked about how many Lutetium treatments I could have and she said that in Germany they had been giving as many as 12 to 14 but it varies very much on the individual. She did say that in the UK the most that has been given is 8.

I also asked about how the BITE therapy and Lutetium would work and while nothing is set in stone she thought I would have the 2 Lutetium treatments, another in about 6 weeks, and then should look at starting BITE therapy later in the year and then seeing how that goes. If needed I could then come back to further Lutetium Treatment.

But as with all things it is dependent on how things go, how my PSA is, what future scans show and how I feel.

So what we need is for this treatment to really bring the PSA down and for my bloods to be ok followed by a period of stability.

So after a pause the Lutetium turned up with a small entourage, connecting everything up was very slick and the Lutetium was soon being injected. As before the syringe and the pump were in a lead box which protected those administering the Lutetium from the effects of radiation.

The lead box from which the Lutetium will be injected.

The treatment or Isotope administered was Lutetium-177 with an activity of 7400 MBq. At the date of treatment the exposure rate was 18 microSieverts per hour at 1 metre. The effective half-life of the isotope within the patient is 3 days. No detectable radioactivity is present after 7 to 10 half-lives, depending on the detector used..

The infusion took around 15 minutes and I chatted with the team. For the most part the talk was about where we might like to travel to once we can.

And then it was all done, I had to wait around for about an hour to make sure I was OK and for them to get the paperwork done.

And then I was off home.

I am back on Monday for a post therapy scan with Gamma Camera to see if the radiation has gone to the right places in my body.

CT Scan 17 Feb

Back at UCLH for another scan on my back, a CT scan this time.

The good news about a CT scan is that they are quick, it took 3 minutes for the scan. It took me 3 hours to get there and back? Just saying 😉.

The reason for the scan was to have another look at my back, I think the CT scan can give a different view to the MRI I had before.

As always the people I dealt with were excellent and the scan was quick and simple.

Just have to wait for the results now.

MRI Results 10 Feb 2021

Well, it is 11.10 a.m. and my phone rings and indicates a private number, I suspect it is my Oncology Outpatients call that I am expecting which indeed it is.

And it is a doctor I have spoke to a few times especially over the last few weeks and he has the results of my MRI Scan of yesterday.

Not great news as he said that I have a displaced bone fragment that maybe pushing against the nerves/spinal cord hence the tingling in my toes.  He said that this fragment is not stable and could move about and so I need to be very careful.

They have referred me to a spine surgeon who will review and see what if anything needs to be done. 

On the downside they have said that I should wear my Spinal Brace once more for a period of 12 weeks and wear it for most things although I do not need to sleep in it.

They are expecting more information to come through during the course of the day and they will update me as they get further information.

They are going to email a list of “do’s and don’ts” to me with further guidance about what I should be doing.  The good news is I can still walk and so can still take Teddy out for walks.

Teddy

The MRI did not show any further information about cancer in the spine aside from what I already knew.

So now I am waiting for further information on what I can and cannot do in regard to my back and wearing the brace.

I have also had confirmation that my Lutetium Treatment, number 7 this will be, will be on the 19th at The London Clinic.

So right now it’s a quick trip into the attic to dig out the spinal brace and it’s freezing up there!!!

Update

I had a follow up call with the doctor this afternoon who said that the MRI has been looked at in more detail and they feel certain that the Spinal Cord is not compromised which is good news.

There has also been feedback from the neurosurgery team who feel that surgery is not an option as there is too much damage from cancer and from cancer treatments like radiotherapy and the lutetium, to my spine which discounts surgery as an option.

What this does mean is that they now feel that the spinal brace is more of a long-term solution which is bad news for me, mainly because it becomes uncomfortable to wear after a number of hours and it also gets damp with sweat and perspiration which in itself is uncomfortable, so I have asked if it is possible to have one of a different type.

The one I have is made of fibreglass and fits tightly around my back and chest and I am very sure it does what it is supposed to do. I have seen spinal braces online that have a metal spine and neoprene straps to provide the support and so I would have thought that something like that might work for me, it provides the support but also allows my body to breathe and is more comfortable.

Some other types of braces I have seen.

Obviously, I need to take advice on this, but it is definitely worth asking.

The other thing that came out of the call is that they want to do a CT scan to look at the integrity of the cement from the vertebroplasty procedure so I will be heading back to UCLH in the next week or so!

Oncology Outpatients 3 Feb 2021

Ok so just had my Oncology Outpatients telephone call.

In this case it was not as good as face to face as we were discussing the PSMA PET Scan that I had on the 26th January and I felt that if I would have been in the hospital I would have been able to see the image and better relate to it. That said it is much safer do the appointment this way rather than going into the hospital.

I cannot really be sent an image of the scan as it is three dimensional and needs special software to be seen.

The scan did show an uptake in activity around the area’s that had previously shown that they had cancer in them, so parts of the spine, the hips, the pelvis, back of skull which is not great news but on the plus side it did not show any new sites or much activity in soft tissue, the lymph nodes and the like.

My PSA has risen to 182 up from 150 on the 4th January and so they feel that having the remaining 2 treatments of Lutetium is more urgent and are going to look at getting that booked in.

I also said that I was experiencing increased back pain and some pins and needles in my right big toe and so they are going to send me for a MRI Scan to look in more detail at that area in my spine.

The pins and needles in my toe might indicate some kind of Spinal Cord Compression which may be caused by the increased activity in my spine.

I have had pins and needles in my left big toe for some time but that is put down to the Vertebroplasty procedure causing a little pressure on the nerves and in many ways, I had grown used to it.

I have been experiencing a few more aches and pains over the last couple of weeks but not sure if that is because I have been walking a little more or whether I have over done it somewhere or is it the effects of the increased activity.  No one knows at this point.

So Now I have another telephone call booked for next Wednesday with hopefully a MRI before that.  Normally scan’s take longer to get booked in so I would be surprised if I have had it before next Wednesday!  But you never know 😉

I also asked again about the PSMA BiTE Therapy which was mentioned as a trial at my last appointment, and it was felt that it was better to do the Lutetium first and then look at trials.

So for now it is time to wait for the next scan and see what that shows.

Cancer certainly is a waiting game, always waiting for the next scan, the next appointment and so on.

Still it is better to be waiting 🙂

PSMA PET Scan and Blood Test

A busy week this week, Prostap yesterday and now heading to London and UCLH For a PSMA PET Scan.

I arrived early and headed downstairs for a blood test which took about 20 minutes and then headed to the Radiography Department which was on the same floor.

The reason for this scan is that my PSA from a blood test at the start of January had gone up from around 90 to 150.  And the scan is to take a look inside and see if the cancer has spread or looking more pronounced.

Well what is a PSMA PET Scan?

Prostate-specific membrane antigen (PSMA) imaging is a nuclear medicine exam using positron emission tomography (PET) to detect prostate cancer. … PSMA PET is very sensitive for detecting prostate cancer, with accumulating evidence suggesting it is superior to conventional imaging tests such as CT scans or bone scans.

Basically I was injected with a radioactive trace that is attracted to Prostate Cancer calls via a cannula.

This is my arm with the cannula fitted, there is a flush fitted and inside the Orange case is the radioactive trace.

The orange case around the radioactive injection is made from metal like lead and protects the radiography staff from exposure to radiation.

Once the trace has been injected I had to wait about an hour for the trace to work it’s way round my body and so there was nothing to do but have a nap 😴!

The hour quickly passed and I was asked to change into a hospital gown.

And then it was my turn to be scanned.

I was asked to lay on the scanner bed which I did but it was painful to lie flat with my back and so a couple of pads were placed between my back and the bed. They helped a lot.

Once I was all set up on the bed a frame was put over my chest and head to help keep me still and the ‘panic button was put in my right hand.

And then the bed was slid into the drum of the scanner, it seemed quite a long way in!

And then the scanner started up, it is very similar to a MRI with lots of noise as the scanner spins around.

The scan takes about 30 minutes and I was moved in and out of the scanner as different parts of my body were scanned.

I was then asked to go to the bathroom and empty my bladder which I duly did.

And then it was back in the scanner for a few more minutes while they scanned the area around my pelvis.

Once the scan was done I was able to get dressed and make my way home. Like all radiation treatments I have to avoid being too close to people and especially young children to prevent them being exposed to the radiation.

That said I did give Teddy a big hug when I got home.

I just have to wait a week now for my results 🤞.

Prostap No 15

Well it’s a Monday morning and there is snow on the ground and ice on the roads and I have to head to the GP’s surgery for my 15th Prostap Injection.

While there was ice on the road outside our house once I got onto the bigger roads the ice was gone and the journey was much easier.

Hence I arrived at the surgery early and I knew they were not keen to let people in early so I spent a few minutes in the car waiting.

Closer to my appointment time I made my way to the surgery. They have a video camera doirbell at the door and so you are screened before they let you enter the surgery.

Once inside it was only a short wait until the nurse called for me. It was the same nurse who had done my last injection and she had recorded which side she had administered the injection and so she would be injecting my on the right side of my stomach.

The needle was quickly inserted and the injection was done and it was time to head home.

I do tend to suffer from more hot flushes for a week or so after the injection but then it settles down a bit.

Only 12 weeks until the next one!

Outpatients and Zoledronic Acid 6 Jan 2021

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

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

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

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

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

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

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

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

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

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

It’s all done wearing a mask

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

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

Just waiting for the drip to be attached.

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

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

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

Covid Swab and Blood Test 4 Jan 2021

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

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

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

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

A fairly quiet Tottenham Court Road.

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

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

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

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

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

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

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

I look forward to finding out on Wednesday.