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.
Iain2 May 2018 at 8:57 am #57329
Thank you for this informative post. My husband is due to start PRRT this month, but we have some serious concerns about radioactivity following the treatment as we have children, and how it could affect them. I don’t know whether this is something that others may have considered before beginning the treatment?2 May 2018 at 3:17 pm #57337
My husband hasn’t had PRRT but from what others have said your husband will probably have to keep away from people for a period of time after his treatment. The hospital should have given you the instructions, if not then ask them as it is important and it might take a bit of organising. Once that period of time has gone by then there’s no problem as I understand it. I hope your husband’s treatment is successful.
Be aware that this forum is being taken down from Friday 4th May and you will have to use Facebook for information and chats with others. We are not happy about this because not everyone wishes to use Facebook but the decision was taken so that is that.
I wish you both well for the future.
Jenny2 May 2018 at 4:12 pm #57339
I was told to stay away from pregnant women and babies, so your husband may need to stay away from babies . I have an under 16 year old, I was told I could hug him briefly, but not sit next to him watching TV or at the dinner table. But was fine to be in the same room. This was from Friday-Monday so it’s possibly the same for babies. Also if you were to travel within 1-2 weeks of treatment you have to show a document, I didn’t ask about this but assume it might set of some of the detectors!
They will constantly monitor your husband but impossible to tell how radioactive he’ll be after treatment until he has it. He may not be able to sleep in a bed with you after for a couple of nights. I was, but my neighbour couldn’t sleep in same bed as her partner for one/two nights.
I’ve the number of my specialist nurse I was given on my consultation, hopefully he has the same maybe give him/her a ring and they will answer your questions.
That’s why I posted about my treatment ,because I felt I had questions about silly things that I didn’t want to bother my nurse with, but in retrospect I should have just asked her as you feel so much more confident when you have a few answers.
I wish you both well, it’s not as bad a treatment as I thought it would be and my nurse says it a lot more gentle than having chemotherapy. At least your in and out within a couple of days and it’s not ongoing over weeks.3 May 2018 at 11:40 pm #57352
Thank you so much for your replies. It’s such a shame that this forum is closing because it’s not as easy to find posts on topics on Facebook.
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