jacquiepurple

Just joined this site tonight and was wondering how your doing?

Hi Jacquiepurple, thank you for responding to my question. I will definitely be praying for you. I did not see other carcinoids on this site at first. I left my DX under small intestine cancer, tried to change it now...This has been called a rare cancer, at the beginning Oncologists I saw called this neuroendocrine cancer, I was not sure carcinoid and neuroendocrine were same. Well, the pathology from my liver biopsy in the beginning was believed by two pathology groups, one at UCSF, a top rated cancer center, to be very aggressive. After pathology reports from surgery they believed, based on Ki-67 levels, it is intermediate, well differentiated. So thankful for changed report, first I realized that even biopsies could be wrong.
I see that you are on octreotide. I was getting monthly injections beginning at 20 a month, increased to 40, until my insurance refused to pay for the higher dose. Scans showed continued growth of tumors in liver throughout sandostatin injections. That was when same surgeon who said liver was inoperable decided it was best option. I had some low blood sugar episodes during sandostatin injections, first week after was the worst at the high dosage. In the last months on it I was having extreme fatigue, painful joints... Painful episodes in abdomen had returned, diarrhea was intense, so didn't see that the sandostatin was helpful. Could have been that the tumor load in liver was the real culprit. After recovery from liver surgery no carcinoid symptoms, only episodes of intense abdominal pain,maybe food related?
For the last nine months I have not had sandostatin, or any treatment, just take occasional pain med, if needed.
I am glad to hear that the sandostatin is working for you. I have seen many with carcinoid that live many years. My faith is in God, I am a believer in Jesus Christ. I trust in Him, His peace, His love helps me in the darkest hour!
I pray you will experience His love for you more and more, you are never alone, He is with you!
Blessings,
Psalm 103 is very encouraging. Psalm 118:5,14,17 encouraged me in a very dark time.
"Out of my distress I called upon The Lord; The Lord answered me and set me free in a large place.
The Lord is on my side; I will not fear, What can man do to me?" Ps. 118:5-6
"The Lord is my Strength and Song;And He has become my Salvation.
I shall not die but live, and shall declare the works and recount the illustrious acts of The Lord." Ps. 118:14, 17
Julie

Hi Jacquiepurple:
I am a 2 time carcinoid cancer survivor also. My first diagnosis was in June 2001 and my second was in July 2010. I am on Sandostatin injections once a month as well. My question is does it effect you differently every other month? It only effect me when I receive it on my right gluteus maximus. I become sore at the site, tired and upset in the stomach.

Jacquie, I am finding it difficult to identify carcinoid patients who are active on What Next. Any suggestions? How are things going with you? You've had a rough road. Several tumors. I had one and so far nothing new to deal with. I still feel almost ridiculous to even be on this site. And yet, my oncologist reminds me that I AM a cancer patient. Do others feel this way I wonder.

I will have my monthly SANDOSTATIN injection tomorrow and an appointment tomorrow and will also meet with my oncologist. I don't expect any surprises.

Hi Jacquie, How are you doing? Is the Sandostatin helping? It is working well for me.

Hi Jacquie, Seems were are in a similar position. Let me know how you are doing.