I HAVE LIVER CYSTS, WHAT CAN I DO

SOMATOSTATIN - OCTREOTIDE - SANDOSTATIN
Here is the latest medical article on animal studies with Octreotide and liver cysts.

A first, a clinical trial to test if liver cyst growth is diminished by a drug. If liver cysts are lessened through the administration of once monthly intramuscular injections of Octreotide this is a great breakthrough for individuals with severe liver cysts.This is an ongoing trial and will run for two (2) years. A few more participants are needed. This new exciting not yet released drug seems to diminish both liver cysts and kidney cysts. The medication is called Octreotide (a long acting intramuscular form); also called Somatostatin, Sandostatin LAR depot. A previous short acting intravenous form of Somatostatin has been successfully used to diminish ascites from liver cysts. This earlier intravenous form lasted only as long as it was being infused, approximately three (3) minutes. Another form can be given subcutaneously. Now we are hopeful that this long lasting monthly injection of Octreotide will have more practical applications in reducing liver cyst size and growth. The beauty of it, is the intramuscular form of Octreotide lasts continuously for a month.

For those times when we might bemoan the fact that we have liver cysts; here is a short story about a stone in the road. For your reading is a second article about Altruistic donors. This piece is dedicated to some dear brave friends–- Anne - Leo and - Brenda, all died from cystic liver complications before receiving a liver transplant. Hong Kong has a rapid screening four (4) step process that has been successful in increasing their altruistic liver organ donations. To read more click the following underlined link: Rapid Liver Donor Workup, When Altruism Is High, Gets Organs.

HOW DOES OCTREOTIDE WORK?
Liver cysts arise from cholangiocytes cells. These cholangiocytes make up only 3% of all of our liver cells. Cholangiocytes are very important. They produce 40% of all bile. Liver tissue is composed of either hepatocytes or cholangiocytes. Hepatocytes however make up 80-90% of total liver tissue.
Cholangiocytes are the cells that can eventually become liver cysts. These developed liver cysts have both hormone receptors and somatostatin receptors on their exterior cellular surface. Within the interior of liver cysts there is cyclic AMP. Cyclic AMP is extremely elevated within cysts. We know that caffeine will elevate cyclic AMP and it is for this reason that many of us try to avoid chocolate, coffee, de-caf and other caffeinated beverages, herbs, and foods.
Exciting results were published by the Mayo Clinic in the Gastro Enterology Journal with animal studies, liver cysts, and Octreotide. Animal studies with Octreotide dramatically decreased both liver and kidney cyst growth. Octreotide is a somatostatin analogue. It stimulates somatostatin receptors on the exterior of liver cysts. By increasing somatostatin Octreotide receptors, this decreases cyclic AMP within the cyst.
Decreasing cyclic AMP diminishes cyst growth, stops the oozing of fluid within cyst cells and in humans has resulted in a slowing of kidney cysts. In animal studies it has been shown to decrease liver cysts.
According to the article in Gastro Enterology, within liver cholangiocytes and within the serum of polycystic rats, their cysts contained approximately two (2) times higher concentrations of cAMP than in the normal non-cystic rats.
Tolvaptan, another not yet released experimental drug, blocks vasopressin. The vasopressin receptor site is located on the exterior of kidney cysts. Tolvaptan's blocking of vasopressin results in a decrease of cyclic AMP. Elevated Cyclic AMP plays a major role in cyst development and cyst proliferation. However tolvaptan has no effect on liver cysts whereas Octreotide diminishes both kidney and liver cysts.

CLINICAL TRIALS

Information: Clinical Trial
Clinical Trial Mayo Clinic

PARTICIPANTS: This trial is ongoing. It has begun May, 2007. Those interested should expect a phone call or email by June. Researchers have begun with a small group of about 5. The cost of octreotide is about $2750 per shot, should we have to pay full cost for the drug. This cost is covered by Novartis sponsoring this trial with Octreotide.

United States, Minnesota
Mayo Clinic, Rochester, Minnesota, 55905, United States; Recruiting
Page J. Linda 507-538-9851 page.linda@mayo.edu
Marie C. Hogan, M.D., Ph.D., Principal Investigator

OCREOTIDE CLINICAL TRIAL This trial takes place in the United States at the Mayo Clinic in Rochester Minnesota. Researchers are looking at the possibility that Octreotide will diminish liver cysts. Octreotide reduces both liver and kidney cysts. Anyone interested in participating kindly send an email requesting more information.

PURPOSE: This is a Mayo Clinic Rochester Minnesota USA (2) year clinical trial to check that Octreotide once monthly injections 20 mg in each buttock will diminish liver cyst growth. The budget is so limited for this trial that unfortunately there will not be a travel stipend. It has gone through the institutional review board. They are waiting for a contract from Novartis who will supply the drug for testing. The expected start date for interview screening is spring 2007. Two out of three participants will receive the drug. Should participants wish to continue a second year, at that time all participants will receive Octreotide, should it prove useful.

PRIMARY RESEARCHER : Dr. Marie Hogan - is the primary researcher. Her secretary Cindy Hanberg (507) 266 1963. Contact person for this trial is Linda Page at 507 255 -0406 Mayo Clinic Rochester Minnesota USA

CRITERIA
••18 years to 80 years old
•• Creatinine less than 3 (normal kidney functioning)
•• Symptomatic liver cysts
•• ADPLD or ADPKD
•• Willing to travel returning to the Mayo Clinic in Rochester Minnesota quarterly for the length of the study (24 months).
•• Arrangements will need to made by participants to receive once monthly injections of Octreotide/Placebo through their local doctors.
EXCLUSION
•• Uncontrolled diabetes
•• Cyclosporin
•• Symptomatic gallstones or biliary sludge
•• Creatinine greater than 3 or dialysis
•• Received Octreotide within past 6 months

Sandostatin LAR (Octreotide/IM injection an analog of somatostatin) will be used as a once monthly injection in the Mayo Clinic Octreotide Clinical Trial. Somatostatin injections have been used effectively in treating both lupus and acromegaly, and rare endocrine tumors. The Mayo Clinic Octreotide Clinical Trial is the only one looking specifically at liver cysts and the role of Octreotide in reducing and diminishing liver cyst growth. This is a first for us, PLD'rs. We hold out the hope that Octreotide will prove beneficial for reducing liver cysts. There is another clinical trial going on in Bergamo, Italy at the Mario Negri Center. Mario Negri completed the previous small clinical Octreotide trial with 12 patients that showed Octreotide LAR was safe and it reduced kidney cysts. One participant withdrew from nonsymptomatic gall stones. Another withdrew from asthenia.

SIDE EFFECTS include: diarrhea, abdominal pain, gallstones, and rare allergic reactions. Somatostatin has been observed to slow kidney cyst growth in persons with ADPKD. It blocks cyclic AMP formation. Cyclic AMP is a trigger hormone produced by the body, that signals cysts to grow, expand, and fill with fluid.

If liver cysts have been marsupilized, and Octreotide or Somatostatin is given - one may possibly experience a slowing down of the liver fluid drainage from oozing fenestrated liver cysts. This form of Octreotide is subcutaneous or intravenous injections.

OCTREOTIDE TRIALS USA Mayo Clinic Trial to diminish liver cysts.

OCTREOTIDE: This site is for participation in the 3 year follow up Octreotide clinical trial in Bergamo Italy. Contact Norberto Perico, M.D.

The Italians previously completed a small clinical trial of 21 individuals showing that Octreotide - Somatostatin Sandostatin LAR Depot decreased kidney cysts and diminished their size. Mario Negri Institute is recruiting participants in Italy and neighboring countries for a three (3) year follow up clinical trial. To read about the previous Italian study click here. The previous trial looked at kidney cysts.

Dedicated to anyone who may have thought one drop of water does not make a river. . .

I HAVE LIVER CYSTS, WHAT CAN I DO

Polycystic kidney disease, PLD polycystic liver disease, and certain rare endocrine tumors are among those that have used a long acting injectable once a month analog of somatostatin known as Octreotide. We are awaiting the trial for Polycystic Liver Disease showing that somatostatin slows down liver cyst formation. This start date is thought to be January 2007. For more information send an email.

ARTICLES OCTREOTIDE
ADPKD This is the study that started it all - Original study from Italy ADPKD: Safety and efficacy of long-acting somatostatin treatment in autosomal-dominant polycystic kidney disease. CONCLUSION: In PKD patients, 6-month somatostatin therapy is safe and may slow renal volume expansion. This may reflect an inhibited growth in particular of the smallest cysts beyond the detection threshold of a CT scan evaluation.
ADPKD Dr. Grantham: "Technological advances now allow cyst and kidney volumes to be accurately measured in individual patients using MRI. The course of PKD can be determined within a short period of time. Ruggenenti et al have certainly made a large crack in the wall that has hitherto prevented effective therapy for ADPKD."
OCTREOTIDE Scroll to to page 18 - 19 Somatostatin study. PKD research update by Dr. Perrone.
PRESCRIBING info Sandostatin LAR once monthly injections
PRESCRIBING short acting IV intravenous Octreotide.
OCTREOTIDE Drug information for long acting octreotide.
SOMATOSTATIN Extended long release octreotide ADPKD
SOMATOSTATIN useful in dieting women
SOMATOSTATIN Many articles using Octreotide in acromegaly
OCTREOTIDE enhances immunosuppression
OCTREOTIDE decreases cyclosporin concentration.
PANCREATIC EFFECTS pancreatic neuroendocrine tumors
ORTHOSTATIC HYPERTENSION helped by Octreotide
OCTREOTIDE prevents increase in portal pressure after meal
OCTREOTIDE Ascites diminished
OCTREOTIDE sandostatin LAR prescribing info
OCTREOTIDE Short acting prescribing info

Octreotide animal model reduces liver cysts full article
Octreotide animal studies abstract
Octreotide Clinical Trial
Octreotide more on Mayo Clinical Trial
Octreotide Bergamo Italy Octreotide Clinical Trial
Octreotide Safety and efficacy - helps reduce kidney cysts
Octreotide
Octreotide helps Weight loss
Octreotide helps Orthostatic hypotension
Octreotide helps Ascites
Octreotide helps diminish portal pressure after meal
Octreotide Acromegaly articles
Octreotide LAR
Octreotide short acting IV Rx
Octreotide Sandostatin LAR
Octreotide Grantham MD
Octreotide enhances immunosuppressive
Octreotide decreases cyclosporin concentration
Octreotide pancreatic neuroendocrine tumors
Octreotide pancreatic injuries adjunctive role
Octreotide Hepatic artery Portal vein reconstruction
Octreotide PCK rat (ARPKD) and liver cyst development
Octreotide Biliary Dysgenesis ARPKD
Octreotide Intrahepatic bile duct transport
Octreotide Human Liver Stem Cells: Recent Developments
PLD LISTEN TO LECTURE
PLD polycystic liver listen to taped lecture on PLD.

 last updated: Wed March 5, 2008