Supporting the

Neuroendocrine Cancer Community

Asked if you would like to go on a clinical trial for PRRT (Peptide Receptor Radionuclide Therapy) and the immediate reaction is “what on earth is that” and “how dangerous is it”? 

The title is foreboding and scientific – enough to give anyone the jitters!

Put another way and the question becomes: “How would you like to be a pioneer and take part in a worldwide trial of a revolutionary treatment that could aid to stabilise the growth of your tumours or even shrink them?” Then the immediate reaction is “Yes, please”.

So, I embarked into a journey into the unknown but what proved to be a successful journey for me and more than 70 per cent of those taking part who reported either a stable or slightly improved situation. On those statistics it is no surprise that it is a treatment now being widely used to treat many NETS, the stumbling block being the number of hospitals, and the number of people qualified, able to administer it.

It may still be a frightening title to many, but it is one of the most exciting developments for Neuroendocrine Cancer patients and one that is now being looked at to treat other cancers. It works in a similar fashion to a Gallium Pet Scan with which most of us are all familiar. An infusion of somatostatin sticks to the cells which are cancerous and then a radioactive substance called lutetium is added to the infusion and, hopefully, will stick to the somatostatin receptors on our tumours and then shrink or kill them. It is slow acting and can still be working for up to a year after treatment.

If it sticks it is called uptake, and you have a scan after the treatment to make sure there has been “take up”.

Returning to 2014, I didn’t hesitate when invited to be one of 220 patients from across the globe asked to take part in the trial. My NET started in the small bowel and had spread to the liver and lymph nodes. All had been stable since a series of operations in 2008 and 2009 but the little blighters were showing signs of growing and being a little more aggressive. Since the trial I have been one of the lucky few to have a 5th and 6th PRRT cycle (more later).

So, I was plunged into the unknown, presented with a daily diary to complete that looked to cover my every move during the day plus regular fortnightly trips to the Royal Free Hospital in London for check-ups and many, many blood tests, inspections, plus even more questions that the diary did not pose. And, of course, there were the four doses of PRRT given at 12 weekly intervals.

Flicking through the diary, I see that my first treatment was arranged for the day of my monthly Octreotide injection. There was a three-week screening period beforehand where the diary shows crosses galore against diarrhoea, bloating and fatigue with some mild flushing.

It’s best to gloss over the actual administration of the radioactive substance. By the time I had my first dose the trial had been underway for more than a year, and some participants were close to finishing. As it was a medical trial there were understandable strict rules over administration with the medics having to follow the same procedure for all of us otherwise the trial would be invalidated. I was informed that they had already learnt that the way the trial said to administer the substance was not the best way and was producing side effects that could be overcome with slight changes to the procedure.

For the trial you went into hospital in the morning, had the treatment in the afternoon and then kept in until the next day for monitoring when you had a scan to test the uptake of the treatment before being given your Octreotide injection and sent home.

In my view, it’s all very laid back and calm, nothing to get het up about, so just sit back and relax.

Today most people seem to be a day case, although when I had my 5th and 6th doses at Guys Hospital I went in on a Wednesday, had the treatment Thursday morning and allowed home on Friday.

The medics main concern is the trip home as you will be highly radioactive and a danger to people of child-bearing age, young children, as well as your partner. In my own experience, and from talking to others, they prefer you travel by car and in a back seat with only the driver in the front. This was not an issue during the trial when the simple instruction was not to sit near young women and try and not be close to people – a difficult task when sent home during the rush hour! I had to travel by train then and after my 5th and 6th doses, but this was easy as it was during lockdown, and I had the whole of a 100-seat carriage to myself apart from a handful of others.

Understandably the period after the treatment is a concern to many. It takes two weeks for the radioactive level to subside and after that you still have to be careful about being in contact with young children.

Think of it as lockdown mark? (What number have we got to?). For couples living in a one-bedroomed property it will be a problem, but otherwise you must stay away from your partner as much as possible, eat alone and not share things such as towels, etc. Plan in advance and it is easy.

If, like me, you live alone, then do stock up for meals for the fortnight and chat up a neighbour, relative or friend to do your essential fresh-food shopping.

The treatment day itself can be long but I would advise against taking a good book. There are so many interruptions during the day that you will be frustrated and never get into the story flow. I’m heavily into Sudoku so I armed myself with a pencil and many puzzles. I also took in my tablet but hospital wi-fi is rather flaky, so unless you have one that uses data this can be frustrating. I tried to watch a Champions League match one evening and each time a goal was scored the wi-fi seemed to lose signal! Good job I didn’t support either team.

Rooms are equipped with a terrestrial television so just hope the programmes aren’t too dire and you can find one to enjoy.

Everyone seems to suffer from different side effects from a NET and this seems to apply to PRRT too. With the former we have diarrhoea and fatigue as the most common denominators and with PRRT it seems to be fatigue. Don’t overdo it, if you feel tired have a rest, there is always tomorrow or next week.

Sickness in the 48 hours following treatment is possible but this has been reduced by the use of an injection beforehand, and then anti-sickness tablets afterwards and also the speed with which the dose is administered. It was a problem for me during the trial but not at all during the 5th and 6th treatments.

At the end of 2019 my lesions again started to become angry and a little more active.

Unfortunately, the governing body that rules on treatments, NICE, have decided that four treatments are the maximum you can receive on the NHS. My outlook was disappointing and with COVID affecting cancer treatments the door was firmly shut on any inpatient help. However, a year later GUYS hospital agreed to give patients a 5th and 6th dose to be able to present NICE with statistics that there was mileage in extending the treatment period.

Thanks to a recommendation from the Royal Free I was accepted as one of those and had my treatments in February and April 2021. Since then, I have had two Gallium PET Scans which show that my position has stabilised.

Hopefully, NICE will see sense. There is considerable work going on in the background in a bid to change their minds. Data from the Netherlands shows tremendously encouraging results from the extra treatments as does Germany where one patient is up to treatment 11.

Finally, my advice to anyone offered PRRT: accept it gratefully and don’t worry. 

Yes, I am aware of people for whom it has not been successful but for the vast majority it is a lifeline not to be refused.