Tagged: #carcinoid #Serotonin #labwork
11 October 2017 at 7:52 pm #55611
My mother was diagnosed with carcinoid NETs in 1995 at age 27. Rare case of beginning in the kidney (that’s the theory anyway). She is turning 50 in a few weeks! The majority of the tumors are now in her liver (50+), then some in lymph nodes and on bones. Over 10 years ago she switched doctors & hospitals, and since then no one has checked her serotonin 5HIAA levels or any other NET involved biomarker levels, only routine scans and basic blood work are done every 3 months. I am a 2nd year medical student and I firmly believe she has severe carcinoid syndrome. But her doctor’s NP that she sees at her appointments, tells her that the shortness of breath is from gaining weight (85 lbs to 104 lbs, but she is still underweight) and that her nightsweats, daytime sweating episodes, severe muscle cramps, severe mood changes, itching, facial swelling, and DVTs are all just side effects of her chemotherapies. I’m not saying it isn’t, but shouldn’t she be having her Serotonin, 5HIAA levels checked to be sure and to prevent heart damage? Or is it pointless to monitor her Serotonin because her case is so advanced? I’d appreciate any insite on this. To simplify, my question is how often are hormones and biomarkers measured & monitored in NET patients based on your experience?13 October 2017 at 9:25 am #55614
Sorry nobody has answered your question yet, not sure I know the answer either. You could email the Nurses direct so you will be sure of a reply.
I was diagnosed with Lung NET with 3 Liver Mets in April this year and had all the tests you mentioned at that time, not been repeated since but I have no symptoms at all.
I am currently having Chemo, about to have 4th Cycle if my Platelets come up!! My last CT showed almost 20% reduction after 3rd Cycle. I had Ga-68 Scan at Royal Free last week but I do not have receptors so I didn’t light up. This site has a lot of really useful information and you can download the book lin pdf format. It’s a great reference point
I’m sure someone will be along who can answer your questions
Best wishes to you and your Mum
Chris x14 October 2017 at 9:17 am #55622
Good morning Macy, Chris is right, perhaps you should contact our specialist nurses, I am sure they will be able to help you, not a question we, as patients can answer for you. Not sure where you live, but I, probably wrongly, assume it is not in Great Britain? The only question I would normally ask, is, is your mum being treated at a specialist NET Centre, in which case she should have contact with a specialist nurse/team who should help with some answers for you. Also I would second Chris’s advice and suggest you download our fabulous booklet, there is so much information in there. I hope this helps, a little, there is usually someone on here to chat to, and I am sorry that I have not been around for a while, but hopefully I am back!! Carole14 October 2017 at 9:32 pm #55628
Thank you for your responses, I found the answer to my question!16 October 2017 at 7:58 am #55632
Hi Macy is your mum having octreotide injections to help relieve the symptoms? My hormone levels are checked every 6 months.I hope your mum gets some help.
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