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.

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 🙂

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 😁👍.

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 😉.

Next Lutetium Treatment

My next Lutetium Treatment is scheduled for the 5th of June and is due to take place at the London Clinic.

This afternoon I have had a phone call from one of the radiology team to tell me that they have updated their Therapy Pathway and that I needed to go into isolation for 14 days prior to the treatment!

Fortunately I am already in isolation and so this should be no big issue.

She said that I would need to have a Covid 19 test done 48 hours prior to treatment.

Which again shouldn’t really be a problem!

She then asked about when my last blood test was and when the next one would be. Luckily I had just been sorting this out (see my post ‘A Right Palaver‘).

And so I told her.

She said she would write to my Oncology Consultants and ask them to write to my GP to ask them to do the Covid test.

This all sounds simple but you can see where this is going!

She said she would copy me in on the email to the consultants so I would be kept in the loop.

She then recapped what I needed to do.

I then asked a question and as the words came out of my mouth I was regretting it.

I said that I could stay in isolation but would need to go out for the Covid test.

There was silence!

I could hear the brain whirring as this was worked out! Clearly a new problem had been presented.

And so she uttered those words.

‘I will call you back!’

And so now I wait to hear how the GP’s Surgery will handle the Covid test request when they get it and I wait to hear how The London Clinic think Covid testing can be done while staying isolated?

Watch this space!

A Right Palaver

So two simple things need to happen, I need my three monthly hormone injection and I need to have a blood test in time for my next Oncology Outpatients Appointment on the 3rd June.

It would make sense to have them both at same time and have them both done by the GP’s Surgery. After all I normally have my Hormone Injection done by them and I had recently had a blood test done at the surgery.

So last week I started making enquiries about getting this done.

First of all I had to convince them that this was the best plan!

Then they couldn’t access the nurses diaries as they only release appointments 2 weeks in advance.

The person I was speaking to said she would speak to the practice manager and get back to me.

And true to her word she called me back and said that the practice manager had said that I should be referred to the District Nurses who would come to my house and do both the Hormone Injection and the Blood Test.

What a result I thought, I was happy with this outcome.

A few days passed and then I got a call from one of the District Nurses who asked if I was housebound. I said I was as I was classed as Extremely Vulnerable. She asked if I was housebound prior to the virus and I said no.

She said then I wasn’t technically housebound and that they couldn’t visit and I would be referred back to the GP.

Great?

So I messaged the surgery who got back to me the next day, it was the same person that I had previously spoken too!

We discussed the problem and she tried to book me in. She managed to book me in for the hormone injection but couldn’t access the calendar for booking the blood test.

She would call me back!

And she did, to tell me there were no available slots for blood tests and so I would need to go to The Rivers Hospital and have a blood test done there!

The surgery would post me a blood test form to take with me.

I was straight on the phone to The Rivers and managed to get booked in.

So I now have my Hormone Injection on the 27th and the Blood Test on the 28th! One woth the GP and one at The Rivers!

What should have been fairly simple seemed to become very complicated. It’s a good job I am pretty robust and can work through these situations but I can see a lot of people finding this very stressful.

I feel more needs to be done to make these things simpler and less of a palaver!

Fingers crossed🤞

Lutetium Treatment No5 2nd Attempt.

Well here I am again back at the London Clinic for treatment Number 5 of Lutetium which is of course the second attempt after the quality control issues of last time.

Like last time I’m I got a car into London to reduce the risk of picking up the virus on the train and the tube. And once again the journey only took about an hour as the roads were pretty clear although there did seem to be a larger volume of traffic on the roads.

I arrived at the clinic and visited the hand sanitation unit and then checked in. And then as a matter of priority I got myself a coffee.

20200417_091005

Soon I was in my room had a cannula fitted and blood taken. I found out that the treatment was going to be early and things would be done at slightly quicker pace than normal to reduce my time at the hospital.

20200417_113944

So come 11 o,clock I was being injected with the Lutetium and placed behind the radioactive screens.  Where they normally keep me for a number of hours to review the radiation Decay they are going to let me go as soon as possible and so I should be leaving the clinic at about 1 p.m.

20200417_113957

And I am pleased to say that everything went to plan and I was home by 2 pm.  

As well as being socially isolated Barbara and I, and Teddy, need to stay 2 metres apart for the next 5 days so that they do not get exposed to the radiation.  So it’s separate bedrooms and sitting at either end of the sofa.