Carcinoid Tumors

[Richie]

Whey protein by Body Fortress is a highly concentrated protein powder that can be mixed with plain yogurt or just about anything you like. I added this to a high protein, low fat diet along with niacinamide and 400mcg of octreotide (4 X 100mcg daily). Also I use androderm patches for added
energy and to slow wasting. Medications used besides the octreotide and androderm are 30mg of prevacid (PPI), 150mg zantac (H-2 blocker), 25mg hydroxyzine (an antihistamine 4 X daily). And for control of pain I use a 25mg fentanyl patch. Pangestyme is also used as a digestive aid.
This carcinoid syndrome began in 1988 and went undiscovered for 12 years (it was misdiagnosed from gastritis, pancreatitis, gall stones, ulcers and even prostatitis )
For about 19 years now the battle has worn on and optimism always prevails. A positive and super strong outlook with the support of God almighty gives me the courage to carry on. Even the worst days are good days when you awake on this side of the grass. Although I'm sixty four now and had four heart attacks in the 1980's and am blind in one eye and have almost critical aortic stenosis, I
just could never imagine giving up. My personal physicician of 31 years can't understand why I'm
still here and I've yet to tell him...it's all abouth faith and mind over matter.

[UroDoc]

Thanks for sharing your positive outlook, good luck

[meygarden]

You do have a great positive outlook, your are strong. Thanks for posting your story.

[takorosh]

Hallo fellow patients, I'm nearly 55 years; a woman and have just been diagnozed with carcinoid syndrome in the intestines. According to the PET-scan there is a tumour there. But to my surprise, I have to have an enteroscope (spelling??). I have so many questions that I really don't know where to start. Would one or more of you be willing to answer my questions, of course, only when possible.
I would appreciate this very much. Although I grew up in Australia until my 18th year, I have lived in The Netherlands ever since, so if my English is a bit squeaky, please forgive me.
Thank you for reading my story and I hope that I may be so fortunate to "meet" people who know what I'm in for in the very near future. Greetings, takorosh

[stephalee]

Dear Richie,

thanks for sharing your story. It's great to read about a long term survivor. And I wholeheartedly agree that with your religious perspective. Without God in my life, this would be so much harder to face (diagnosed with metastatic carcinoid at 35). Faith and hope and resignation to God's will are keeping me going. Best wishes to you.