Post Lutetium Scan

Today I am back in London for the Post Lutetium Scan. This is where they use a Gamma Camera to see where the Lutetium went and whether it matches the scans that show where the cancer is.

I am writing this entry retrospectively and at this point have not really had a full explanation about the image but I have been told everything looked ok.

The scan itself took about an hour and being a private clinic they send you a CD with the image on which is useful. I do think the NHS should make it easier to get hold of images but they seem less willing (or perhaps able) to share this kind of stuff. I am also conscious that I would not want this to cost the NHS.

Looking at the image I think that the dark patches show where the radiation has gone, which as far as I recall is in about the same places as the cancer.

The Big Day or Lutetium Treatment Number One

After a long wait the big day finally arrived and it started early. The appointment letter said to arrive at 8am so we were up at 6am to catch a train.

We arrived promptly at The London Clinic.

And went to reception to check in. Not surprisingly the first person we saw was a lady who could help us settle our account. I wasn’t really surprised and in many ways more surprised that they hadn’t asked for it before now. Once that was done I was taken to my room which was very nice with a TV, private bathroom, an IPAD to control the blind and room temperature.

We ordered some coffee and I was thinking about breakfast, well I had been up a while by now. Some nurses came in and took some blood and had 2 goes at fitting a cannula, no joy but the said they would return 😖.

Coffee arrived along with biscuits and drinks for the day, because of the radiation everything was disposable.

The coffee was much needed.

Another nurse appeared carrying the cannula set; round two was about to begin.

With much squirming from me the nurse managed to get the cannula in and I was set for treatment.

And now the waiting…….

It would seem that that Lutetium is made in Southampton and then couriered to the hospital, so initially I was told treatment would be about 1pm and that soon slipped to 2pm.

In the meantime I had other things to worry about.

I had told the doctor that I had Shingles and so she had to go and seek advice, this lead to much head scratching and conversations around how to manage the Shingles and any other issues.

For a while I was worried that treatment would be cancelled but eventually we got to a point where we could proceed.

I was to immediately have a boost of Dexamethasone steroid to help combat the shingles and I would also be prescribed an anti viral tablet called Aciclovir which I would take for a week.

We spent time discussing pain management with the outcome being that I would take Morphine Slow Release Tablets (MST) twice a day for 2 days and also take Paracetamol and Ibuprofen as well to combat any pain. The doctor was concerned that the Lutetium would cause pain in my bones.

Around 2pm and the Lutetium arrived in my room along with the consultant and a physicist. By this time I was hooked up to a drip and was having saline solution put into my arm.

The Lutetium was a in a metal case and looked heavy, I guess it was made of lead. The heavily protected syringe was taken out of the box and about 30ml of a clear solution was added to a chamber on the IV.

It was all rather anti climatic after the long wait, it took about 5 minutes for the solution to go into my arm and then I was back on the straight saline solution.

A reading of my radioactivity was taken using some kind of Geiger counter and another reading would be taken later in the day before discharge.

I then had a two hour wait.

About 4.30 the physicist returned and took a second reading, he said things were looking good and that he just needed to do some calculations before I could go home. I gather that from the two readings he was able to calculate the rate of decay and how fast my body was flushing out the radiation and from that would be able to calculate how long I had to sleep separate from Barbara etc.

By this time Barbara had returned from a short shopping trip and was allowed in my room although she had to sit behind a screen to protect her from the radiation.

The physicist returned with a letter for us that told us we had to sleep apart for four night and to try and keep arms length apart when sat on the sofa etc. I was not allowed near small children and pregnant women.

We were also advised to take the train home as it meant that Barbara would not have to sit so close to me which we did.

We made it home without incident and I was feeling fine.

Lets hope it stays that way.

Oncology Outpatients 21 Aug 2019

It seems like ages……

Ages since we have been up to UCLH for an Outpatients appointment, in truth it’s been 4 weeks but after being there weekly at some points it feels like a long time.

The Macmillan Cancer Centre seemed quite, perhaps because of the holidays.

I had a blood test at 8am and then met a friend for breakfast.

Back to the Cancer Centre for 11am so I could see the research nurse and get my observations done.

Everything was fine and we had a good catch up with the research nurses.

We then went to wait to see the doctor and I hadn’t even sat down when we were called forward.

We saw doctor that I hadn’t seen in ages so we had a good catch up on how I was. I mentioned the rash and he had a good look at it and decided it was Shingles.

The good news was that he thought it was on the way out and it didn’t need treating, he also thought that I would be ok for the Lutetium treatment on Friday.

On the bad news side he said my PSA was 700 in July, he didn’t have this mornings reading.

700 seems very high to me but he also needs to look at the bigger picture, my overall health etc.

He prescribed some more Dexamethasone which we collected from the pharmacy and then it was time to head home.

A Rash

It’s Saturday morning and I am just getting out of the shower when I look at my reflection in the mirror and I notice a light red blotch just above my left nipple.

I look closer and I see another two blotches.

Mmmm, I wonder what that is, I muse?

I touch them and feel no pain or discomfort, there is no itchiness or anything; If I hadn’t seen them in the mirror I wouldn’t have known they were there.

Over the coming days I keep an eye on them.

Something I should have mentioned earlier is that I have two radiation “burns” or marks on my back from where I had the radiotherapy a few weeks ago, these are almost square in shape and as itchy as anything, they also feel slightly raised.

So very different from what is on my chest.

Over the next couple of days I notice that the rash seems to be spreading under my arm and onto my back.

I have started to worry a little but with my oncology outpatients appointment in a day of two, I decide not to go to the doctors.

I do mention it to Barbara who then gives me a through examination but finds nothing else, the rash appear to start above my left nipple and in blotches spread round to almost the exact place on my back, if I had a nipple there!

I am sure it’s nothing major but that doesn’t stop my mind going into overdrive!

Thankfully it’s now the morning of my Outpatients appointment and we can get someone to look at the rash.

And the good news is, I have shingles, better than some of the options I had contemplated.

The doctor thought that it was caused because I was a little run down.

I have also had a cold sore which seems to tie in with being run down or maybe it’s just the change in the weather.

The doctor also thought that the shingles had mostly passed and that no treatment was needed.

Which was good.

So I can relax a little and try and recharge; with the cruise coming up soon it should be the ideal time to recharge and get back into better shape, I may take a few vitamin tablets and have a few more oranges to help me out.

Then on Friday I become a radioactive superhero as I have my first Lutetium treatment and who knows what that may bring, but fingers crossed.

Frustrating And Rewarding

Well it has been a fairly busy week.

I did some research on hospitals in Germany that offered Lutetium treatment and opted to contact the Munich Technical Hospital.

Partly because the consultant had recommended it and partly because it was a direct flight from Stansted.

And so after looking at their website I emailed the International Department with an outline of my history and what I was after.

And then I waited……

After the weekend I decided to phone them, it took several attempts to get through and I was passed around a bit but eventually I got through to the Nuclear Medicine Department.

I chatted to one of the doctors and he said he had seen my email and he would send through more information.

I felt optimistic.

Then I got an email from them stating that they were taking part in the Vision Trial and as I had been accepted onto the trial they could not offer me the treatment.

Which I suppose is fair enough although it did come as a surprise and a disappointment.

So I started to look at other hospitals in Germany when I got a call from The London Clinic saying that they could offer me treatment on the 29th of August, which was great news.

Needless to say, I accepted their offer.

Then a few days later I got another call from them saying they could do the 23rd of August.

I bit their arms off and accepted their offer.

This was great news and just the dates we wanted so no need to go to Germany.

It was also great timing as we had booked a cruise and this date would give me time to recover from the treatment if needed and also time for the radiation to cool down as it would have presented some challenges being on a cruise especially with the sleeping arrangements.

So overall a week or so of a rollercoaster ride, emotions up and down but everything worked out in the end.

Having Slept On It

After the upbeat meeting yesterday and having had time to sleep on it I had come to the conclusion that 19th September was a long way away given the pace that the cancer seemed to be progressing.

And so I thought it might be better to look elsewhere for treatment i.e. Germany.

But before making a hasty decision I decided to email the consultant I had seen the previous day.

She came back to me fairly promptly and it fact agreed with me and thought that Germany might be a good option and getting treatment sooner would be a good course of action.

So now all I had to do was find a hospital in Germany that was willing to do the treatment.

A Fairly Big Day

After my good nights sleep (see previous post) I had a bad night last night and just couldn’t settle, partly it was my mind running wild and partly the Dexamethasone helping to keep me awake.

Anyway.

We are heading back up to London today to meet with a Nuclear Medicine Consultant with a view to having the Lutetium 177 treatment at The London Clinic.

It should be OK as I was accepted onto the Vision Trial so my PSMA and everything is OK.

If you recall I was accepted onto the Vision Trial but put into the control group hence looking to go private.

The meeting with the consultant went very well and we spent about an hour with her. She spent time asking about my condition and my treatment so far as well as talking us through the Lutetium treatment.

By the end of the meeting we had agreed a date of 19 September for my first Lutetium treatment, this was mainly due to a break in manufacturing of the Lutetium in August.

Overall I was very happy and really felt that we had moved forward.

We headed home.