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 🤞.

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!

Blood Test

Today I have been over to the GPs surgery for a blood test and I have to say that it went very well.

The doctor was very good and got into the vein first time and got the blood out and the vacutainers full. I was also quick to be seen, I barely had time to sit down.

This blood test is roughly at the 6 week point between my last appointment at UCLH where they are now seeing me every 3 months when I have my Zoledronic Acid treatment for my bones and the next one at the start of January.

Fingers crossed that the results will come back and show no major increase to my PSA and also nothing else to worry about.

Overall I feel fit and well and am getting around a lot better although I still use a walking stick when I go out walking.

I have tried to reduce the amount of morphine I take for the pain in my back, I now take 10mg in the morning and 5mg at night.  The are slow release tablets and cover me all day.  I did try stopping the nighttime dose but found it a little painful in bed and it interrupted my sleep so I have started to take them again.

I also take 10mg of Amitriptyline at night and wonder if I could get away with not taking this any longer. I think I will discuss it with my Oncologist in January in case there are side effects coming off it.

The Acupuncture that I had has been going well but I think it was more effective when I was having 3 sessions a week rather than one a month. So I am thinking of stopping them.

As I say I am feeling a lot better and what I really need to do is continue to build up my strength and endurance by walking more. I still need to be very careful with my back and in particular with bending and lifting as the vertebrae above and below T12, the one which partially collapsed and I had cement put in are both very vulnerable to collapse as well although I hope the Zoledronic Acid is helping to strengthen them 🤞.

X-Ray showing my damaged vertebrae.

So I am hoping the results for the blood test come back soon and show good news.

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.

PET Scan 14 Aug 2020

Well it’s an adventure today, I am off to UCLH for a PET Scan and I have decided to go by train and tube. The PET Scan is a follow up on the Lutetium treatment I have been having and will take a look inside to see how things are. My PSA has been stable at around 90 and the scan will help decide what I do in regards to treatment.

Of course my big dilemma was what to wear and take, it was cooler than it has been and wet. In the end I opted for shorts and a light fleece and a waterproof which should cover all options. Then I needed masks, gloves, etc.

I left a little early as I hadn’t been on the train for a while and I knew that there was building work going on at the station. I was pleasantly surprised that I got parked very easily and used my Blue Badge to get a disabled parking space close to the station entrance. That said the car park was not busy so I guess not many people are using the train.

At the train station

The train was not that busy so I found a seat and settled down for the first part of my journey.

The train to Tottenham Hale was quick and smooth. 

On arrival at Tottenham Hale things had changed a little as there was also building work going on there.  But my transition onto the tube was also quick and easy.

Tottenham Hale was not that busy as you can see.

Going down

The tube train itself was a little busier and would fill up as we go into the city.  The tube was very hot so shorts were a good choice.

I arrived at the hospital early with the view that I would get a blood test before my scan.  I  made my way to the first floor and found where the blood tests were done. I normally have blood tests done in the Macmillan Cancer Centre but would try the main building .

I took a ticket and waited .

No luck and I had to give up and head to Nuclear Medicine for my scan.  If I can I will try for a blood test after the scan.

I arrived at Nuclear Medicine at the right time and filled in the questionnaire.

It was not long before I was taken to a prep room and fitted with a cannula. Sounds simple but it took three attempts to get it in, the actual penetration of the needle is not too bad, it’s the wiggling it around to get the needle into the vein that gets me!

Once the cannula was fitted I was then injected with the radioactive element that would be attracted to the cancer and then show up on the scan, showing the tumours and there size, in the past they had reduced in size.

Third time lucky getting the cannula in!
The radioactive injection comes in a heavy lead box.

I had then to wait an hour for the radiation to circulate around my body before the scan.

The lights in my room are lowered so there is only one thing to do…  zzzz.

The hour passed quite quickly and I was soon in the scanning room.  I had difficulty lying flat on the bed which hard but managed to get into a position I could hold.

Once more I closed my eyes and slowly I moved through the scanner.  Fortunately this was nice and quiet, not like a MRI.

A radiation sensor in the hall shows the background radiation and the lower shows it when I put my hand over it.

Then it was time to get dressed and go.

I decided not to go for a blood test after all I don’t know when my next outpatients appointment is yet and so will try and get a blood test closer to that date so it is more relevant .

The journey home was quick and easy.

All I need to do now is wait for the results of the scan.

Lutetium Treatment No 6 and a Swab up my nose!

So I was up bright and early today for my ride into London and my appointment at the London Clinic near Regents Park. The roads did seemed a little bit busier to me with more traffic on the roads and definitely more pedestrians in London although the journey was much quicker than normal the city did feel busier.

My room showing the screens to protect staff from radiation.

I arrived at the hospital just before 9 a.m. and went inside to see that all the Covid precautions were still in place, with hand sanitation stations near the door and screens around the reception staff. I was soon checked in and directed upstairs to my room although before heading up I headed off to the coffee shop for a flat white, a nice treat for me to have and a decent coffee made by someone else.

Coffee and a Pain au Raisin

I got to my room and settled in and soon the nurses turned up to do my observations, my blood pressure, temperature and weight.

Two different blood pressure results, it amazes me how it can change so quickly.

Another nurse came in and fitted the cannula and she also took some blood for the blood test. Things were going quick this morning as she was followed by the catering lady who took my breakfast order.

The nurse did a good job of getting the cannula in my arm.
Breakfast

And then it was time for something new, it was time for the Covid 19 Test. The nurse that was doing it was not a fully qualified nurse but a nursing assistant although I was happy for that person to do the test as they need to get the practice in.

The Covid Swabs ready to be sent off.

The test consists of putting in a swab up and to the back of your nose and another swab into the back of your throat, not a very pleasant experience but very necessary. Hopefully the results will be back shortly and will tell whether I have coronavirus or not.

I was then informed that treatment would not start until after both the blood test and the Covid test came back from the lab which takes about 90 minutes. I kind of understand waiting for the blood test although I did have one only a week ago. But the Covid test seems slightly out of sequence, surely part of the reason for doing that is to protect staff and I have already seen a number of those and even more if you include reception staff and those at the coffee shop?

Only one thing for it, I will have a snooze 💤💤!

And then suddenly everything changed and it was all systems go, the nurse was in to hook me up to the drip and start introducing the saline solution, I also had add a visit from the radiography consultant who asked me a few questions before saying we could go ahead with the treatment.

Treatment only takes about 30-minutes but today it took three people although one of them was just here to see what happened and you can see a picture of the trolley with all the equipment on it it although they were visiting another patient after me.

Once the treatment was over I had a chat with the consultant about future steps. The feeling is is that the next step is to have a PSMA PET scan in a couple of months time to see how things are inside. Because the PSA is continuing to drop she is confident that the treatment is working well but the scan will help to clarify that so we just need to wait and do it at the right time for this latest treatment to have had time to take effect.

She is effectively handing me back to UCLH who will continue to manage my treatment going forward and make decisions as to what the further treatment will be. Typically lutetium treatment consists of six treatments and this was my 6th treatment. Although in some countries and institutions further treatments have been given but they may be held back until they are needed .

So now it’s a bit of a waiting game while we just let time pass, they will continue to do blood tests and monitor my PSA. I am due to have my next oncology outpatients appointment in about 6 weeks time and I guess by then we will have had another blood test and know where the PSA is at.

One piece of good news from today is that the Covid-19 test came back negative so I know that today I do not have Coronavirus which is nice to know.

So is this my last visit to the London Clinic in the short-term in that I will not be back here for at least a couple of months. I suspect I will be back for treatments 7 and 8 at somepoint.

That said I need to have a good chat with my consultant at UCLH and discuss what other possible treatments may be available.

Oncology Outpatients 3 June

Today I had my oncology outpatients appointment via a telephone call with the same doctor that I spoke to last month. The appointment was quick and efficient and to me it seems like a good way to do these more routine type of appointments and is something I hope they continue to do going forward.

The doctor was pleased with my PSA result as was I, 88 is a good number to be at and a good leap down from last month’s figure of 144.

We also discussed whether I was Borderline anaemic and he felt that there was nothing to worry about and that no treatment was needed as it was very borderline. I accept what he says but I will modify my diet to include more iron rich foods, I may also start to take iron supplements to give me that extra boost.

We then then went on to discuss whether I should have Zoledronic acid ( this is to strenthen my bones) at the start of July and he said I should go ahead with that appointment so that will be a trip to UCLH for that treatment. I will need to consider how I get there.

So with the appointment coming to an end and I was given the all clear to go ahead with the Lutetium treatment on Friday. I did ask a cheeky question as to whether the treatment was available on the NHS yet but the answer came back that it wasn’t yet available. So going forward I will need to continue with the London Clinic.

So being given the go ahead I am looking forward to my day trip to London and seeing a little more than just the view from the house and the garden, and of course it will be a little adventure 😁👍.

Great News – PSA 88

One of the good things that has happened recently is a number of Apps and ways to access your GP and NHS data have been introduced so you do not need to wait for the doctor to access information like blood test results.

And so I used one of my new Apps to look at my blood test results from the test I had last week and was very pleased to see that my PSA had dropped to 88, I have made it back into double figures 😁👍.

It’s actually quite a big drop, down from 144 last month and clearly a massive drop from 1,585 where it was last year.

On the downside the blood test also showed that I am borderline Anaemic which means a lack of Iron in my blood and other things which I still need to find out about.

While I wait to find out if either the GP or my Oncologist will prescribe Iron tablets and of course identify the underlying cause of the Iron deficiency, I can add more Iron rich food into my diet such as the following.

  • liver
  • meat
  • beans
  • nuts
  • dried fruit – such as dried apricots
  • wholegrains – such as brown rice
  • fortified breakfast cereals
  • soy bean flour
  • most dark-green leafy vegetables – such as watercress and curly kale

So I will be looking at some liver recipes, I have not had liver for years!  Liver and Bacon sounds good.

Pig's liver with streaky bacon | Tesco Real Food

And I’ll be getting the blender out and making those lovely green drinks with curly kale and spinach!

But such good news about my PSA, I feel it sets me up for my Outpatients call tomorrow and Lutetium treatment number 6 on Friday.

Can I Cope With This Much Excitement?

All this excitement two days in a row.

Today I have been out for a blood test at The Rivers hospital in Sawbridgeworth so a longer drive than yesterday and a pleasant drive it was to. The roads were pretty clear and it took no time to get to the hospital.

Once again I masked up and with my gloves on I made my way to reception. They were practicing social distancing with markings on the floor to help us with social distancing.

I was directed to the blood test waiting area where they were three people waiting. We looked at each other over our masks, it was a little strange just seeing people’s eyes.

I waited about 10 minutes before being called forward.

The nurse was experienced but it still took her two goes to get the needle into the vein.

And then it was over, my blood will be sent to Princess Alexandra Hospital in Harlow and the results will be sent to the GP. I will be hoping for healthy results across the board and especially anything to do with bone marrow function which helps with immunity and the production of white blood cells. And of course I will be looking for a reduction in my PSA, I would love to be back in double figures but cannot imagine it will come down that much.

Last time it was at 144 which is great as it was at 1,585 before I started the Lutetium treatment.

The drive home was pleasant, I was so tempted to go to the supermarket or something but managed to resist!

Now it’s a waiting game for the results.

Oncology Outpatients next Wednesday via a telephone call and then Lutetium treatment on Friday.

Oh that’s a day trip to London 😉.