30 March 2018 at 7:42 pm #57058
I’d like to tell you about my first PRRT treatment ,just for anyone who might be offered it.
Having been told about 2 months ago my tumours were much bigger and that I would be offered treatment following a multi disaplinery meeting. So ,I had googled what it might be and come up with PRRT although I didn’t think I’d be offered it as I thought it wasn’t used by NHS anymore.
I was very pleased then, to be offered treatment within a couple of weeks!
You stay in hospital for 3 nights in your own lead-lined room with ensuite bathroom. I’d recommend you take good reading material as it’s not always possible to get Wi-Fi and luckily the TV worked fine in my room. Don’t bother bringing night clothes,dressing gown or under wear as if they are radioactive still by the time you leave hospital you’ll have to leave them there. The hospital gives you their own to pyjamas and gown .
The first day/night was just blood tests and admission and very nice supper,have what you like first day then keep it real plain and simple.
The second day started with canula inserted and amino-acid intravenously for 8 hours in total, they protect your kidneys from the radiation and have lots of nutrients, but they also make you feel nauseous,pee a lot and tired. Half way through the nurse and physicist interrupt this and administer the radiation ,it’s clear and I didn’t feel anything but shortly after felt ever so hot /cold.
That night I was sick twice and had a bad headache, but the nurses will give medication if you need it and I couldn’t eat that day.
The third day my sickness had passed and I could eat a little but next time I order my food it’ll be plain stuff like bread or potato. I had two long scans on this day, morning and afternoon and the radiation had gone to all my tumour areas. I felt very tired and even reading was an effort so I just listened to the TV/radio.
On the last day I had one more scan and was discharged with anti-sickness pills. That weekend I was tired and nauseous, I didn’t take my anti-sickness pills as I didn’t feel it warrented that.I have been quite flushed after treatment especially after eating and my appetite has been poor with a weird taste in my mouth. The night I came home I had a lot of pain at night in my stomach/abdomen I got up and took paracetamol but next time if I get pain I’m going for Co-dyamol as paracetamol didn’t help .
The nuclear doctor thought I’d be well enough to work the next week and I was. I only work 2 days from home don’t know if you would be able to work though if you have to commute or physical job I think nausea could be a problem for some people.
Another lady had the treatment at the same time as me and she didn’t suffer sickness , so everyone is different . A week on I’m feeling much better appetite improving and my stamina back.
I hope this account helps you if your going for treatment cause I really didn’t have a clue and hope you’re as well cared for as I was,the staff were so lovely and kind.30 March 2018 at 11:43 pm #57059
Hello SC, many thanks for your account of your PRRT treatment, it is always helpful to understand how these treatments affect us all and as you say, we are all different. I didn’t think you stayed in hospital for three nights, but of course they have to be sure you are safe and not radio active when you go home. You were certainly well looked after, how wonderful. Keep in touch and let us know how you go on, Carole.3 April 2018 at 10:03 pm #57065
Hi SC, thanks for sharing your experience of prrt. I’ve not been offered anything as exotic as that yet. I’ve got tumours in my pancreas liver and stomach but the lanreotide seems to be keeping everything in check so far.
As you said, we all suffer from different symptoms, even when our tumours are in the same places. Weird disease!
Please keep posting to let us know how things are going.
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