12 August 2017 at 8:07 am #55089
I’m having a bad day. Diarrhoea caused flushing (nothing new there) I almost blacked out. I called my husband for help and he gave me my octreotide rescue shot. It took a while to stop the palpitations .I’m only one day overdue for my sandostatin analogue injection. I’m having PRRT on Tuesday, I can’t have any more octreotide injections until next weekend. Is there anything I can do to help me through the next few days to relieve/prevent the symptoms.13 August 2017 at 4:37 am #55093
Have you had PRRT before? You may be getting stressed with the treatment so close, I am six years into my journey and just spent ten days awaiting surgery in hospital only to be sent home to await a date. Which has put on hold my 5th round of PRRT at the end of the month. I still get bad days and put it down to stress of this illness. All the best for Tuesday and hope you are feeling a bit better when you read this let me know how you are. Tricia13 August 2017 at 10:51 am #55094
This is my first time Tricia. I am feeling anxious. I’ll be glad when it’s done. I’m having a better day today. I’ve often felt lightheaded when I’m flushing but ive not had everything go black. It was scary. So sorry you’re having to wait for your surgery. It must’ve been horrible being sent home. Do you mean you’ve had PRRT 4 times or 4 lots of 3? I’m not sure how often you can have this. I’m really hoping to have some more energy and be able to walk without having to sit down because I’m flushing and be able to eat more. Does it take you long to recover from the PRRT? It’s really reassuring that you’re talking about 6 years.I hope you hear about your surgery soon.
Elaine13 August 2017 at 12:15 pm #55095
Dear Elaine, I was on the net natter trial at The Royal Free I had four rounds of PRRT starting in Nov 2013 and the fourth one was 12th May 2014 so after each treatment I felt more tired but once recovered I had a good quality of life until late last year when Tumour on my overies became a big problem they grew at a fast rate and I had to have complicated surgery on 21 st Feb this year, only then to find That other tumours have grown that’s when they decided to give me two more rounds of PRRT but since then have had a blocked small bowel and now need surgery before treatment. Like you I am a grandmother of six little ones between the ages of seven and two so I cannot wait to feel stable again. And do things with the family. this year has been awful for me so cannot wait to get surgery then treatment. I am sure you will be fine, one thing I was sick after the radiation but every one is different just listen to your body and rest if you need to, Let me know how you get on Elaine with the treatment and if you need to chat I am here with lots of experience from embolization to inoperable liver Mets and primary plus a bypass op (this will be removed when surgeon does the other blockage). YOu will feel a lot better when you have completed your PRRT are you having four rounds? I have a friend who has had seven rounds in the last six years but she has insurance. MY other two friends who were on the net natter trial are also having another two rounds. We are also having a monthly injections every three weeks now to calm the tumour growth before treatment. All the best Elaine keep positive it will get better, I did find tea and coffee red wine made me flush and getting hot but at present I am on a fibre free diet so it passes through me –13 August 2017 at 8:29 pm #55096
Oh gosh Tricin, you have been through a lot. I think I’m having 4 lots over 8 months as long as my blood count and kidneys ate OK. I have sandostatin every 3 weeks but it’s never stopped the flushing or diarrhoea and more mets have appeared.I assume things would be worse without them. I’m feeling positve about the treatment just anxious about going through it. I hope you get sorted out quickly and you start to feel more normal. We’re driving up to Liverpool tomorrow. I’ll let you know how it goes. Thanks for the support.
Elaine14 August 2017 at 10:23 am #55099
Dear Elaine my daughter had 4 infusions of PRRT (lutate) for the insulinoma she has (last infusion a year ago) and had no more hypos within days of the first treatment. She did need anti-sickness medication during and after and her blood platelet count went down but has been creeping up again. i wish you well with your treatment
Colin14 August 2017 at 1:52 pm #55100
Thank you Colin that’s reassuring. I’m pleased for your daughter. It’s horrible going through all of this but I’d find it even harder to watch my daughter going through it. I hope your daughter continues to improve.
Elaine20 August 2017 at 4:54 pm #55162
PRRT went well. Still struggling with nausea and sickness on day 5 despite trying different anti sick tablets. Struggling to eat and drink anything. A cup of tea is a no no. I think I was being too optimistic to think I might be fit for work tomorrow. Did anyone else still have this problem on day 5. Can I expect to feel better anytime soon?22 August 2017 at 9:22 am #55164
Hi there lanemole, hope you are feeling better. The nausea and sickness can sometimes last up to 2 weeks. Unfortunately some people find anti-sickness tablets dont make any difference but it worth trying different ones. Be kind to yourself and have as much rest as you can.
Lindsey22 August 2017 at 12:59 pm #55167
Just a thought, would those bands you wear around your wrist, usually used for travel sickness, be any use?
CD23 August 2017 at 6:51 pm #55174
Thank you Lyndsey things are starting to improve. 4th antisick tablets I’ve tried and they’re making a difference. I’ve stoppedal feeling nauseous the whole time and started to eat a bit. I had my analogue injection on Monday which seems to have made the diarrhoea and flushing worse. Almost passed out this morning but the rest of the day has been better. I need to rebuild my strength now.
Elaine23 August 2017 at 8:22 pm #55182
Hi Elaine, glad to hear something is finally working for you. Sometimes your symptoms seem to get worse after PRRT, this can be a ‘flare response’ so as the tumours start to break down they can release hormones. So although you feel terrible, it means the treatments working by breaking down the tumours.
Lindsey24 August 2017 at 4:06 pm #55184
Hi Lyndsey, I didn’t know that. I can tell myself the pain and flushing is the treatment working. I have lots of tiny mets, I’m hoping it might wipe some of them out altogether. It’s day 10 so still early days.
Elaine29 August 2017 at 2:05 pm #55196
2 weeks since PRRT. Still flushing badly in the mornings causing nausea.my appetite is really poor and my stomach sounds like a washing machine most of the time. I keep getting pain in the middle of my stomach under my ribs. Just walking up the stairs feels like I’ve climbed Everest. Is this still normal? Luckily I’m on holiday this week. I’m certainly not fit for work. Can I hope to feel better soon? I’m trying to stay positive but I’m struggling.4 September 2017 at 4:42 pm #55203
3 weeks since PRRT and still really fatigued. Any exertion, that can be just standing after sitting for a while, causes flushing. Not usually as bad as the morning flush. Trying to walk anywhere causes flushing. I dread getting up in the morning because the flushing is bad, my heart is pounding,there’s a knot in my chest and stomach and I start retching. on really bad days everything whirls around and I can’t make it back to bed. I have longer periods of feeling OK but it seems to be taking a long time. Did anyone else take this long to get over the treatment? I feel that I should be doing more but I can’t.4 September 2017 at 9:21 pm #55209
I am sorry you are having such a rough time. I do not have any experience of PRRT. Just try to take it one day at a time. Thinking of you. Take care, Veronica5 September 2017 at 12:31 pm #55216
Thank you Veronica. I’m trying to eat more and build up my strength. My family keep telling me I’m improving, they’ve been amazing. I just has no idea it was going to be like this. Praying that it’s working. Elaine5 September 2017 at 11:38 pm #55220
Trust your family, they see things in us that we cannot recognise when we are feeling unwell and low. X6 September 2017 at 10:07 am #55222
Hi Elaine, I’m sorry to hear you’re still suffering side effects. Have you been in touch with your GP or consultant? If someone is really struggling like you are sometimes a short course of steroids is recommended to get you over this period. It might be worth speaking to them to see if this would suit you.
Lindsey7 September 2017 at 4:18 pm #55258
I’ll bear that in mind Lndsey. I’ve had 24 hours in hospital. After a bad bout of diarrhoea, flushing and sickness, I had to sit on the floor because I couldn’t see, everything had gone black. Luckily my sister was with me. She put cold flannels on my head and neck and I slowly got my sight back and I could give myself the rescue shot. (My sister has never done it) we contacted Liverpool hospital and they said get an ambulance. I had blood tests, chest X-ray and head ct, luckily they didn’t find anything. I gave them he details of the treatment and contract numbers. I had intravenous antibiotics and 12 hours saline. I was allowed home this morning with another anti sick tablet. They said they couldn’t be sure if it was to do with the PRRT or a virus but I’d be better at home. It was such a scary experience and I’m so glad I wasn’t on my own.
Elaine28 September 2017 at 2:30 pm #55454
Any suggestions for getting my appetite back. 6 weeks after treatment, I’m lacking energy because I’m not eating enough. I’m still off work because I start to flush as soon as I move around or try to do anything. I’ve managed to do some paperwork and IT at home but really want to be able to do more and get back to work. Anyone else take this long to get back to normal after PRRT? Any ideas please?
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