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Date of last update: 10/21/2017.

Forum Name: Carcinoid Tumor

Question: When Sandostatin doesn't work

 johnandmarla - Mon Mar 07, 2005 1:40 am

My wife has been treated for carcinoid cancer for the last 18+ months. The primary tumor has not been located, and the only place it seems to have spread is her bones.
She has gone thru many radiation treatments She has tried sandostatin alone and with interferon. Chemo seemed to work for a while between trying sandostatin alone and mixed. She is going thru another round of chemo. Her doctor is excellent and very scientific about his approach. He is very much concerned for her quality of life.
I see so much about chemo not being effective for this type cancer.
Is there any other treatment?
 Dr. Shank - Thu Sep 22, 2005 10:10 pm

Dear johnandmaria:

You say that your wife was diagnosed with carcinoid cancer that has spread to her bones. How was this carcinoid diagnosed? How is the response to therapy being determined? That information could hold important clues for her treatment.

As you may know, carcinoid tumors are usually not malignant, but they produce any of a large variety of hormones and hormone-like substances. They are usually very small, but they may make enormous quantities of these powerful chemicals. With rare exceptions, carcinoids can only be detected by the chemicals that they produce. Likewise, it is the chemicals that they produce, rather than their size or their location, that usually cause problems. .

Most carcinoids that are recognized during life originate in the pancreas or parts of the intestinal tract that were derived from the "hindgut" of the embryo. In that case, the the blood draining from them goes through the liver, which is usually able to remove the substances secreted by the carcinoid. This has led to the widespread, but mistaken, belief that carcinoid tumors only cause symptoms when they have metastasize to the liver or beyond. Metastases to the bones are well-described, but uncommon. When they do occur, the chemicals produced by the carcinoid tumors bypass the liver.

From your description, surgery is not an option for your wife's carcinoid. As you mentioned, conventional chemotherapy is not very effective. Conventional radiation therapy may give partial temporary relief for local symptoms. However, almost all carcinoid tumors have receptors for somatostatin, a hormone that reduces the production of these chemical substances by carcinoid tumors and usually tends to shrink the tumors, or at least slow their growth. Octreotide (Sandostatin) is a synthetic version of somatostatin that can be given in a long-acting form (LAR), usually 10 to 30 mg once a month. It seems to be more effective than the other synthetic versions of somatostatin. From your description, I suspect that one of the diagnostic tools has been an octreotide scan, which would imply that the tumor has high levels of somatostatin receptors. On occasion, massive quantities of octreotide may be needed to control the tumor (I have one patient who requires 20 mg of Sandostatin LAR every 7 days, and gets into severe distress if the dose is delayed just 1 day.). Interferon has been reported to work with octreotide. Octreotide can be used to selectively carry radioactive substances to the tumor cells (such as with Indium-111-octreotide). Strontium-89 has been reported to give relief of bone pain. High dose chemotherapy plushigh dose radiation therapy, followed by transplantation of a patient's own blood forming cells has been described. [131I]-metaiodobenzylguanidine (131I-MIBG) is commonly used in the diagnosis of other types of hormone-secreting tumors, but some benefit has been reported with using it in high doses for carcinoid tumors.

Except for those few cases in which the tumor can be located and surgically removed completely, treatment is lifelong. The primary goal of treatment should be to control the production of the chemicals by the carcinoid or to block their effects--tumor effects, rather than tumor size. Depending upon what the tumor is producing, many drugs can be used to block the effects of the chemicals that are produced. Unfortunately, without knowing what your wife's carcinoid is producing, I cannot make suggestions for blocking medications. However, many carcinoids produce large quantities of prostaglandins, which may be responsible for (among other things) bone pain; if, as I suspect, your wife is experiencing bone pain from her metastases, I would suggest using non-steroidal anti-inflammatory drugs, which are likely to be far more effective than narcotics. I would not give up on octreotide, unless she is unable to tolerate gradually increasing to extremey high levels or does not respond even to them.

Thiazoladinediones are drugs that are most commonly used to treat diabetes. Two of them are available: rosiglitazone (Avandia) and pioglitazone (ACTOS). Both of them have been shown to have very favorable effects on abnormal cell growths, including some tumors and even cancers. There is one report that pioglitazone reduced the growth and caused a special type of cell death called apoptosis (analogous to suicide) in carcinoid cells grown in the laboratory. Since the thiazoladinediones are extremely safe, they would be well worth a try. I would consider using more than the doses that are recommended for diabetes.

Apparently, your wife is seeing oncologists. Endocrinologists have more training in dealing with endocrine tumors than oncologists do. I would suggest that your wife see an endocrinologist with extensive experience in treating carcinoid syndrome (and in diagnosing and treating the little-known endocrine and nutritional side effects of long-term octreotide therapy).

I hope that this is helpful.

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