Carcinoid

7 Posts | Page(s): 1 

Carcinoid

by BigBlueBill on Tue Sep 01, 2015 07:07 AM

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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. 

RE: Carcinoid

by beingcelestial on Wed Sep 02, 2015 07:24 PM

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hi bill. sorry to read of your issue. there are many more people than we think that have this not so "rare" disease/cancer. i suggest you go on thewww.carcinoid.orgsit e and look for specialists (they are highlighted in blue) in your area or in an area that you are able to travel to see them. the site gives you very important info. regarding carcinoid and NETs.

also check outwww.interscienceinstitute.com . you can download and order a complimentary copy of the book Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management. they list everything in there: symptoms, tests, side-effects, insurance codes.

i will message you some other info. in a private reply.

RE: Carcinoid

by beingcelestial on Wed Sep 02, 2015 07:27 PM

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websites shoud bewww.interscienceinstitute.com  andwww.carcinoid.org. keyboard is not picking up my hits probably because it is not on a hard enough surface.

RE: Carcinoid

by kellyyz on Wed Sep 02, 2015 10:26 PM

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On Sep 01, 2015 7:07 AM BigBlueBill wrote:

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 Bill, I was diagnosed with neuro endocrine tumors in April. I have tumors in my stomach, liver, lymph nodes and spine. My tumors are considered advanced. Most people it seems have slow growing tumors and chemo won't usually work. I am on chemo pills (there are 2 and it's known as CapTem). It is working on my tumors. I also get a monthly shot of Sandostatin. Can you get into see an oncologist sooner? I am trying to get an appointment to see a specialist now. I was told I am inoperable. But I'd like to meet with someone who has more experience with this cancer. Dr. Eric Liu in Denver is supposed to be great. I live in NC. Once I get copies of my current scans and mail them, I can schedule an appointment. The group on ACOR.org is wonderful. I just found them a couple weeks ago and there are people with a great deal of knowledge about this cancer. I suggest you join and post there. Kelly

RE: Carcinoid

by Jiggs52 on Wed Sep 02, 2015 11:51 PM

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Afternoon Bill, my husband was diagnosed with carsnoid tumor in the fall of 2012. . We were told that this is a very rare cancer and could live many years without any concerns.They started us on Octroitide injections of 30 mg a month. Last November we found out his cancer was galloping along. We have been through a bunch of tests and scans you jname it we've done it. With the scans we found out that the largest tumor in his liver was 8.9 cm. Two thirds of his liver is covered with tumors. In May of this year we went to Toronto and had what is called a bland Embolization on The right liver lobe. We are back in Toronto the middle of this month for another bland embolization on the left lobe of the liver. This does not cure the cancer it just slows it down the tumors will grow back and we will have to do the same thing over and over again. My husband has been diagnosed with other lesions in the abdomen the stomach and upper clavicle. There is a new treatment coming to Canada at the end of this year or the beginning of next year called PRRT. This is the only treatment that will work on his carcinoid tumor. Praying this helps you

RE: Carcinoid

by BigBlueBill on Tue Sep 15, 2015 06:22 AM

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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 

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