jimtumor
10-24-2007, 02:06 AM
Hello,
I was first diagnosed with IBS, then with Carcinoid Syndrome.....
They told me to deal with it. Then a smart doctor was listening to me one day and then ordered a CT, then two CT guided biopsies. Then a Octreoscan with radioactive isotopes. On the first biopsy they thought found Lymphoma,the second ruled that out to find three Endocrine tumors within a twenty-three lymph nodes in a 18" inches right colon. I had a right hemicolectomy.
Last month I had another Octreoscan, and they found another Tumor,on the front outside of my rectum, between there and the seminal vesicles.
My Onocologist, the G.I.,and general surgeon all agree I needed to be on Sandostain injections long time ago,but because of my insurance, they are taking their time,except that today, they finally approved it and I will start taking the injections soon. This Friday I have another CT scheduled because they told me this was not a text book case,and they also need to go before a TUMOR BOARD to decide the next course of action,since this new tumor is in such a precarious place. From what the doctor told me,they will try to remove the tumor without touching the rectal wall,if so, an ileostomy, if worse, a Colostomy.
I'm afraid that this surgery will be a rectal resection to remove the tumor and leave me with an ostomy.
They put me on LOMOTIL, CHOLESTYRAMINE,and IMODIUM, but that had some,but not a lot of effect on the diarrhea, which isn't that bad. Since my last surgery in October of 2006, I have had maybe two solid stools. They too are also monitoring my Chromogrannin-A, and 5HIaa levels, but the later was from 10.8 before surgery,to 4.3 at present.
_____________________________ Question _____________________
Has anyone been on the SANDOSTATIN injections and have it NOT worked for you? I have been taking 150mcgs twice daily for about ten days now and even though I have lessened my BM movements from 5-7 down to 1 or 2, it is still the Diarrhea. Thank you!
I was first diagnosed with IBS, then with Carcinoid Syndrome.....
They told me to deal with it. Then a smart doctor was listening to me one day and then ordered a CT, then two CT guided biopsies. Then a Octreoscan with radioactive isotopes. On the first biopsy they thought found Lymphoma,the second ruled that out to find three Endocrine tumors within a twenty-three lymph nodes in a 18" inches right colon. I had a right hemicolectomy.
Last month I had another Octreoscan, and they found another Tumor,on the front outside of my rectum, between there and the seminal vesicles.
My Onocologist, the G.I.,and general surgeon all agree I needed to be on Sandostain injections long time ago,but because of my insurance, they are taking their time,except that today, they finally approved it and I will start taking the injections soon. This Friday I have another CT scheduled because they told me this was not a text book case,and they also need to go before a TUMOR BOARD to decide the next course of action,since this new tumor is in such a precarious place. From what the doctor told me,they will try to remove the tumor without touching the rectal wall,if so, an ileostomy, if worse, a Colostomy.
I'm afraid that this surgery will be a rectal resection to remove the tumor and leave me with an ostomy.
They put me on LOMOTIL, CHOLESTYRAMINE,and IMODIUM, but that had some,but not a lot of effect on the diarrhea, which isn't that bad. Since my last surgery in October of 2006, I have had maybe two solid stools. They too are also monitoring my Chromogrannin-A, and 5HIaa levels, but the later was from 10.8 before surgery,to 4.3 at present.
_____________________________ Question _____________________
Has anyone been on the SANDOSTATIN injections and have it NOT worked for you? I have been taking 150mcgs twice daily for about ten days now and even though I have lessened my BM movements from 5-7 down to 1 or 2, it is still the Diarrhea. Thank you!