Somewhere around 1993, I began to experience flushing after eating. At first they lasted less than a minute and were several months apart. I wondered about them but really did not pay much attention to them.

By 1996 or 1997 the flushes were happening more frequently. Typically they would occur at work after eating a light lunch and might last for several minutes. I had someone take my blood pressure immediately before eating and then again during a flush. There was no indication of a problem here because there was little if any change in BP; if anything it may have been slightly lower during a flush. During the same period, I also began to have what can best be described as bowel disturbances. I would be constipated for a couple of days, then have diarrhea for a few hours, no movement for a day and then back to normal for a week or so before the cycle repeated itself again. I was a little concerned about this but this was a high stress period in my work life and I guessed that to be the cause. I had also noticed a lot of hair growing in and on my ears - another sign of age perhaps. I have now learned that this may be caused by the same chemical that causes flushing and sometimes heart damage.

In 1998, the flushes and bowel disturbances were becoming much more frequent and severe and I finally mentioned them to my family Doctor. The first thought was stress as the company that I was working for was in the process of shutting down manufacturing operations, which would ultimately leave me with no job. He put me on several stress medications, which helped the stress but did nothing to alleviate the flushing or bowel disturbances.

In 1999 the factory shutdown was complete and I had secured and was comfortable with new employment; the stress factor was gone. The flushing had gotten much worse, occured after every meal and lasted as much as an hour. Typically, I also had stomach and intestinal gas at the same time and occasionally sneezing and temporary hearing reduction. A large meal of "good" food usually caused a far worse attack than did "fast" food. I tracked what I ate and we looked for a food allergy with no success.

My Doctor ran all sorts of blood and other tests again with no useful results until we tried a glucose tolerance test. We found that my blood sugar went very high about 30 minutes into the test and then dropped below normal and finally returned to right smack in the middle of the normal range after 2 hours. Because of the timing, he and I both agreed that this was probably the source of the flushing and other problems. He suggested that I try eating smaller meals more often. This was a huge nuisance and did not help either. The next step was to suggest that there may be something to "male menopause". Testosterone level was checked and found normal.

In January of 2000 the flushing continued to get worse and was becoming almost debilitating so I was back to the Doctor again. He had no idea what else to try and sent me to an Endocrinologist. The Endocrinologist ran thyroid and other tests and found nothing amiss. Because of the known Glucose Tolerance problem he decided to have me try Glucophage to see if it would control the blood sugar swings and stop the flushing.

After one month I went back to see him with the report that Glucophage had no effect at all. This time I ate my lunch in the car just before arriving at the Endocrinologists office so that he would get to see a flush. He was surprised at what he saw and I do not think that he had actually visualized what I was trying to tell him. The Doctor and his PA put their heads together and suggested a 5-HIAA test. The PA said that it was a long shot and would probably come back negative but that what I was experiencing was one of the symptoms of Carcinoid Cancer. This was the first time that anyone had used the big "C" word and I was very frightened.

The 5-HIAA test came back VERY positive and the PA said that there was really no doubt as to the source of the problem. I immediately went to the Internet to learn about Carcinoid Cancer and the Doc scheduled me for a series of CT scans.

By March 16, 2000 the results were in and I found that I had multiple cystic and solid lesions on my liver the largest of which was 5 cm. On March 22, 2000 a needle biopsy was done on the largest tumor and it was identified positively as a Carcinoid tumor. Chest CTs and Echocardiograms of my heart showed all was OK. Thankfully, I had suffered no heart damage from the tumor secretions.

On March 31, 2000 I had an Octreoscan which showed the same liver tumors shown by the CTs and also a 3 cm tumor at the "root of the mesentery midline". This is probably the primary tumor. My Oncologist and I discussed various treatment options and decided that for the time being we should treat the symptoms with Sandostatin and monitor the tumors to see what they are going to do. I began self-administration of Sandostatin SubQ in three 50mcg injections per day. After about 10 days, I ramped the level gradually up to 300 mcg per day in three injections.

There were some nasty side effects (headache, diarrhea, cramping, gas pains and difficulty urinating) for the first few days but that quickly cleared as I became adjusted to the Sandostatin. Blood tests also indicated that the Sandostatin was having no adverse effect on my Gall Bladder. The flushing subsided almost immediately and the bowel disturbances that I had been having were reduced to a tolerable level. I felt better than I had in a long time.

Shortly after this my Oncologist referred me to a Cancer Surgeon who had some experience with Carcinoid. He ordered a Small Bowel Study which revealed no tumors inside of my intestines and hence no blockages present or even imminent. He indicated that although he could debulk the largest tumors surgically, he could not cure me with surgery. His recommendation was that we do nothing surgically now but just be watchful.

After awhile I found that the flushing and difficulties after lunch had not quite cleared up. I reasoned that perhaps during an active workday more Sando was required. I altered my shot schedule so that during the day the time between shots was 6 hours and at night was 10 hours; the evening time remained at 8 hours. This worked and I continued this schedule until Sept 2000 when, at the recommendation of Dr. Richard Warner of the The Carcinoid Cancer Foundation, I switched to 20mg LAR.

In Feb of 2001 I switched to the LAR 30mg - mostly for the possible additional therapeutic effect. At first we did the LAR shots at home, but my wife was never comfortable giving them to me and when we had a complete failure due to clogging of the needle that we could not unclog she flat refused to do it again. I finally agreed to have them done by the nurse at my Docs office. A pleasent epilog to the clogging incident is that Novartis graciously replaced the dose at no charge. Their rep gave me further and very important instructions over the telephone. This additional instruction mostly involved making sure that the Sando is fully at room temperature before mixing and also involved agitation methods.

I have continued with the LAR 30mg and periodic CT scans. The last set done on August 20, 2007 shows my largest liver metasteses slightly larger by 1/2 cm and root of the mesentary primary unchanged from the last CT in Jan. 2007, however we have seen the slight increase before and the next time it was back to the original 5cm and so I will not worry about it unless the increases continue. They are both maintaining the same average of 5cm and 3cm respectively that they have since my diagnosis in early 2000. Since I have had no treatments of any kind other than Sandostatin, I have to credit it with keeping the tumors supressed and dormant as far as growth or further metastizing are concerned.

I continue to have almost constant problems with gas, diarhea and constipation but the flushing and it's associated other symptoms are a thing of the past. I have tried various things to control the digestive distubances including walking after eating, diet modification, a couple of prescribed medications and various over-the-counter products but none has really provided a solution. I do go easy on things which produce gas for me such as carbonation, highly spiced foods, beans and several other foods that have always given me indigestion. This helps but has not solved the problem. It is my opinion that some of this difficulty may be Sandostatin related but if so it is a small price to pay for the apparent tumor growth control that I am getting from it. So for now, I continue to work, play and do most of the things that I have always done. Hopefully before the tumors start to move again someone is going to find a cure for this disease.

Please feel free to send me Email at asimmsjr@aol.com