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.
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