BigBlueBill's Message Board Messages

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RE: Carcinoid

by BigBlueBill - September 15, 2015

Hi Kelly, Thanks for the reply. I will join that group. I am now on monthly shots of Lanreotide. It has stopped the facial flushing straight away. I am not sure if it just helps with the syndrome symptoms or actually stops the growth/spread of the tumours. I have never heard of Chemo pills. Any side effects from those ? Regards. Bill 

Hi Jodi. I see your post is old in 2007. How are things today ? I live in perth Australia and have just been told I have stage 4 carcinoid cancer with the syndrome. It is in my lower gut, liver and a lymph node. I have just started treatment with an injection of Lanreotide every 28 days. Operating is not an option at this stage apparently. I am male and 54 years old. The biopsy was low diff grade 1. Hope to hear from you. I have not met anyone on Lanreotide. Regards. Bill.

Lanreotide Injections

by BigBlueBill - September 08, 2015

Hi, I have just started these 28 day injections for Carcinoid Cancer with Syndrome symptoms. I would love to hear from anyone who has had these or similar regular injections and how well they worked or not for you, and what if any side effects it gave you. Thanks, Bill, Westen Australia.  


by BigBlueBill - September 01, 2015

Hi, I live in Perth WA. Three years ago I had a large Liposarcoma removed from my left thigh. Yearly scans of my thigh and chest followed. Recently the chest scan revealed concerns in my abdomen. A further abdomen scan revealed "several area's of concern " A biopsy from my groin has confirmed 8/9 carcinoid tumours. Most are in my lower gut one is on my liver and one in a lymph node. My surgeon has signed me off as far as an operation and sent me to a cancer team as I nead Chemo. My appointment to meet the team and then start Chemo is five weeks away.!!  I am not sleeping with worry. I do have diarrhoea now controlled by a good diet. I do have face flushing when angry/upset etc. I have read Chemo does not work with this cancer. I have read the best method is operate and get them out.!! Also read the syndrome I have can lead to heart damage and crisis ? The biopsy was well diff low count. I would like to hear from people who have had this rare cancer especially if Chemo worked ? I am not sure what the plan B is as I have not sat down and discussed this with anyone and am desparate for that appointment in five weeks time. I am male fit and healthy and 54 years old. 

Hi Rob. I live in Perth Wa and also have carcinoid cancer with the syndrome. I have just been diagnosed in the last few days. I have tumours in my lower gut, one on my liver and one in my lymph node making 9 in total. My surgeon from Charlie Gairdiners has sent me to a cancer team for chemo no surgery yet. Not sure when the Chemo starts. Would like to hesr from you about your condition your treatments and how you are now please.

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About BigBlueBill

Patient, Survivor
Other Cancer, Sarcoma
Chemotherapy, Clinical Trials and Research, Conventional Treatments, Diet

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