Tankfest

You might ask why I was writing about Tankfest.

Well Tankfest is a great weekend looking at Tanks and meeting up with old friends.

But the story here is about the pain in my legs which got so bad on Thursday night I was thinking that I would go home.

I could hardly walk and had to rely on Barbara to help me with all sorts of things.

So I relented on the Prednisolone and it seemed to help, it helped me get some sleep and I was much more mobile come the morning.

So much so that I decided to stay and enjoy my weekend at Tankfest.

I did have to use a walking stick over the course of the weekend but at least I got to enjoy my tanks😁.

It did however leave me wondering as to what the problem was, was it the Polymyalgia or was it something else?

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;-)

Another Bone Scan

I have lost count of how many Bone Scans I have had over the last 2 and a half years, I think this is number 12!

Just arrived at Nuclear Medicine and sitting waiting for the injection before my 3 hour wait for the scan.

Today is made a bit more complicated as I am due a CT Scan after the Bone Scan, and so it could be a long day.

Although I should get used to it as I am back here on Tuesday for a PSMA PET Scan, which will be a first for me and is part of the Vision Trial.

Well I was called in on time today and soon had a cannula fitted and the radioactive injection was done.

I asked if they could leave the cannula in as I had a CT scan and they were happy with that. They also had a quick look at the scan roster and suggested I try and get the CT scan done now.

So I popped down to the 2nd floor and they said I could have the scan now, result 😁.

So I quickly got changed into a rather fetching gown!

The big bandage on my arm was to protect the cannula.

I was soon lying on the scanner bed and the radiographer started to prep the cannula for connection to the Contrast Fluid.

I felt a warm trickle down my arm, it was blood!

One of the valves in the cannula was in the wrong position and blood was coming out. I called the radiographer and she quickly closed the valve and cleaned my arm.

And relax!

In no time the scan was done and I was getting off the scanner bed. I asked if they would take the cannula out and they said no so they wrapped it once more.

As I started to get dressed again I felt that warm trickle once more and saw blood running down my arm.

I got the radiographers attention and they adjusted the cannula once more and redressed it.

Then I finished getting dressed and headed straight back to Nuclear Medicine and asked them to take the cannula out, which they quickly did.

After all I didn’t want to be eating lunch with blood trickling down my arm!

So now I have three hours to wait, what to get for lunch?

So the hours passed and I was back at Nuclear Medicine for my 3pm scan. I didn’t wait long and I was asked to empty my bladder and take a seat outside the room which held the scanner.

While I was waiting one of the staff went to a machine on the wall which looked like a hand dryer with a display screen on it and held her hands underneath it.

She started to look concerned and tried again.

The nurse who was with me said that it wouldn’t work as I was radioactive, pointing at me.

I was about 4 feet from the machine and it would seem that I was producing enough radiation to effect the machine which is some sort of device for measuring radiation on staff hands.

Something like a Geiger Counter.

I was now intrigued but got called in for my bone scan which took about 20 minutes and the results should be with my oncologist for my Outpatients Appointment on Wednesday.

And then I was free to go.

But with my curiousity peaked I went to the Geiger Counter and stood in front of it.

The reading rose to those in the image.

I then put my hands under the device and got the following results.

cps is Counts Per Second and is a way of measuring ionizing radiation.

While I had had only a small amount of radiation it was clearly higher than the norm but what surprised me is how far it radiated out from me, I expected it to be very localised.

The radiation in me will decay fairly quickly but I do wonder what the cumulative effect is given that I have now had about 12 bone scans and am having a PET Scan on Tuesday?

This will hopefully be followed up by 6 radioactive treatments as part of the Vision Trial.

I will have to try and wander past this Geiger Counter in future weeks and see how it reacts!

But the big questions is…….

Do I glow in the dark😉

No Meds

For a long time now, it feels like I have been either on medication or taking medication of one sort or another, be that chemotherapy or steroids, I feel I have been on something for a long time.

So, it now feels a little strange not to be taking anything at the moment.

Well that’s not strictly true as I am popping pain killers to ease the pain in my legs and upper body, but it is not actual cancer treatment.

I do wonder if this pain is due to the withdrawal from Prednisolone, it has been a little debilitating but feels like it might be getting better so a little bit of help there.

I am counting down the days until the next treatment starts although I don’t have an actual start date, I do have a date for a bone scan and so it shouldn’t be long after that.

Fingers crossed

Oncology Outpatients

Back at UCLH this morning for an Outpatients appointment. I am hoping to sign the Consent Form for the Vision Trial and for another trial using Niraparib.

I have read through both Patient Information Sheets and am happy to sign the consent forms.

So waited about 20 minutes for my appointment and was seen by a Spanish Doctor with a very long name who we will call Blanca.

She went through the information sheets for both the Vision Trial and the other trial which we now know is called Galahad.We were also seen by Professor Attard as he had to sign off on the Vision Trial.

The Vision Trial is the one I am most interested in as I feel it may offer the best results. The Galahad trial is a bit of a long shot as I was checked for this as part of the Neptunes Trial last year and I didn’t meet the requirements for the trial then, last time they used a tissue sample from a biopsy to check and this time they are checking the plasma. They say there is a slight chance I might qualify this way but its a long shot!

I need to get my head around the Galahad Trial, it’s all to do with PARP Inhibitors (which sounds like something from Star Wars!) so please excuse me being a little vague about it.

As I am back in trial mode the appointment was followed by blood tests, urine sample, blood pressure, height and weight etc.

I also need to go for an ECG which is normally quick and easy.