patti77
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My brother Bruce is currently taking Octreotide (monthly injections) with what appears to be some success. Octreotide is a growth hormone inhibitor. I believe that my brother’s insurance covers this, but I will confirm and re-post.
Here is some information on Octreotide. The first two articles offer some hopeful conclusions and the third article provides a good summary of what Octreotide is and what it does:
http://www.ncbi.nlm.nih.gov/pubmed/12483273
http://www.ncbi.nlm.nih.gov/pubmed/7768398
http://www.chemocare.com/bio/octreotide.asp
Thanks Randi! This website has been of much help to us throughout this journey. Will continue to post as we learn more. My brother is also taking several supplements, which I will post here as well. Will be talking to him today, so should be able to provide the full list. I know that Milk Thistle is one of the herbal supplements and Avamar…but there are several others.
Thanks again for responding and for your kind wishes and prayers.
Hi folks,
The Cancernetwork site above did not cause me any issues…However, I would recommend that you follow Lainy’s advice.
Not sure what the issue is, but would exercise caution, as Lainy mentioned. The information that was on this page is as follows:
Cholangiocarcinoma: Rare, refractory, and rising
July 20, 2010
FEATURED SEARCH: cholangiocarcinoma
The increasing incidence of the liver malignancy cholangiocarcinoma is troubling, especially because it’s difficult to detect and treatments have a high failure rate. But oncology is making inroads against it, according to reports from the field. In the review below, authors from Texas A&M point out tremendous progress in finding molecular strategies to control the growth of this rare cancer. There’s also cause for cautious cheer on the clinical front: the kinase inhibitor sorafenib is showing promising results, food-based polyphenols are in testing as adjuvants to boost the effects of chemotherapy, and results of neoadjuvant treatment followed by liver transplant have been encouraging. In the second article, Italian surgeons have verified that responding aggressively to recurrences of intrahepatic cholangiocarcoma (IHCC) is worth the effort.
RESULT: Recent advances in the regulation of cholangiocarcinoma growth
American Journal of PhysiologyThanks Lainy, for the excellent assessment. We have not pursued the clinical trials here, but uncovered this information in our research. I appreciate the feedback. We have also been checking information at MD Anderson, Mayo Clinic, Sloan Kettering, and Dana Farber in Boston.
Hi everyone! My brother Bruce (Pittsburgh, PA) has an outstanding trio of doctors:
Surgeon: Dr. Wallis Marsh (UPMC)
Oncologist: Dr. Stanley Marks (UPMC – Hillman Center)
General Physician: Dr. Jim GleasonThanks for the quick replies, Jim and Lainy! Jim, Bruce was actually talking to Dr. Kato, too, and we heard great things about him. Dr. Wallis Marsh, in Pittsburgh, is a very humble, unassuming gentleman, who is highly embarrassed by any public accolades that we make, so I state this informtion with the hope that he does not see this post and I embarrass him again. I cannot begin to tell you the above-and-beyond care and treatment he provided to my brother. I have never in all my life seen such extraordinary medical care.
Lainy, to answer your question, Bruce’s outstanding medical trio (in Pittsburgh) are the following:
Surgeon: Dr. Wallis Marsh
Oncologist: Dr. Marks
General Physician: Dr. Jim GleasonDr. Gleason, a close friend of my brothers, found the cancer early and intuitively. Dr. Marks has worked to provide the right treatments at the right time, and Dr. Marsh has truly become our family hero.
Thank you for all that you are providing to the many folks (patients and their supporters/families) who are battling cholangiocarcinoma. I can’t begin to tell you how grateful I personally am for what you are doing and for the people who have taken time to post on this site to help others. It is my time to give back.
Warmest regards, prayers, and love,
Patti
Hi Bob…congratulations on your outstanding news! I am a new member of the discussion board, but have been monitoring this website over the past 21 months, ever since my brother was diagnosed with cholangio.
I just wanted to let you know that your postings have been of great help – and have provided my brother, and my family, with hope!!!! Although he does not post on this site, I copy and paste information that you and others have shared and send this to him often via email.
I am so grateful to know that you found Dr. Koep (or he found you)…and share with you the thought that sometimes we are led to the right doctor.
Will keep you in my prayers!
Patti
