Supporting the

Neuroendocrine Cancer Community

EXPERIENCES OF PRRT 

We were very grateful to be given the opportunity of fighting Ian’s Neuroendocrine Cancer liver mets through PRRT.  Ian had been diagnosed in 2012 and, at the time the PRRT treatment started, his liver was at least 60% compromised by tumours.  We were made aware that the treatment involved four cycles of Lutetium and would begin in September 2020 and end in April 2021.

Despite the many restrictions placed on the NHS during 2020/21 due to Covid-19, we very much appreciated that all four cycles of PRRT took place on time and that throughout we were given every guidance and support possible.

Cycle 1 in September 2020 involved an overnight stay, so that Ian was monitored.  He tolerated the treatment very well and was discharged the following day, then recovered very well at home with no ill effects.

Cycle 2 in November 2020 again went well and Ian had the infusion as a day case patient, feeling well enough to drive home afterwards and again recovered well at home with no ill effects, apart from a slight increase in fatigue.  By then however Ian was having more of an issue with weight loss.

Cycle 3 in February 2021 again went well and Ian again felt well enough to drive home.  The fatigue was much more of an issue by then however and Ian was noticeably weaker.  It took a while for his stamina to build up again, but his appetite remained good and gradually he increased his daily walks, eventually managing between 7000 and 10,000 steps.  His weight loss continued though, it had been around 78kg well before the start of the treatments and was now around 75kg. As weight loss could also be due to natural progression of the disease in the bones etc, we cannot put this entirely down to the effects of PRRT. We were told that his white blood cell count had dropped a little since Cycle 3.

Cycle 4 in April 2021 again went well and Ian drove home, feeling pretty well that evening.  However, 24 hours later he was exhausted, feeling extremely weak and collapsed in the bathroom that night, also feeling very nauseous and experiencing stomach pain. Anti sickness medication helped ease this, his temperature was normal and he recovered over the next 24 hours.  

Since Cycle 4, the fatigue and weakness have been much more of an issue.  Ian also experiences breathlessness and needs to sleep most afternoons for an hour or two. The breathlessness became enough of an issue last week to warrant a visit to our GP who confirmed there was something amiss with the breathing (exhaling as opposed to inhaling and an inability to properly ventilate). Ian had a chest x ray and bloods two days later and we are awaiting the results. Flushing had increased prior to re-starting the fortnightly Octreotide and with an increase in loose bowel movements as well.  His weight two weeks ago, taken at the GP surgery, was 73.8kg, and on the 26th May was 73kg.

Walking has been somewhat restricted as Ian struggles when he becomes breathless and has to stop for a few minutes to recover before carrying on, but we are hopeful that this will improve over time, as it is still early days since the treatments ended.

Diarrohea has also become much more of a problem in the last two weeks with Ian getting very little warning, despite the Creon and Telotristat, which is of course adding to his general fatigue and weakened state at the moment while recovering from PRRT.

The main reason for writing this is in the hope that it may be of help in monitoring other patients in the future who may experience similar issues, but also, very importantly, to express our sincere thanks and appreciation to the Nuclear Medicine Team – Dr Geh, Chris Coldham, Vicky Butler, Phil Anderson and Joanne Kemp-Blake, with apologies to anyone else we have inadvertently missed.  We have made every effort not to ring unless it was really necessary, but have always felt that nothing was too much trouble and the reassurance and care given have been much appreciated by both of us.  Thank you all.

Sue & Ian