1993-1995 - First Flushes - Occurring a few months apart and lasting less than a minute. I was curious about them but not particularly concerned. At that time the flushes consisted only of slightly bloodshot eyes and hot red skin on my face and ears.

1995-1997 - Flushes becoming more frequent now - Towards the later part of the period they occurred after lunch at work several times a week. They lasted as much as a minute or two. I had someone take my blood pressure before and during a flush several times. It was normal both times and if anything may have been lower during a flush. I also began to have some digestive and bowel disturbances. This 2 week or so cycle is best described as a cycle of constipation for a couple of days, diarrhea for a few hours, no movement for a day and then normality for a few days. This concerned me a little but I guessed that it was caused by stress and aging. Also during this time period I also noted a lot of hair growing on and in my ears - another sign of age perhaps. I have only recently learned that it was probably caused by one of the chemicals released by the tumors - too bad it doesn't work on the top and back of the head.

1997-1998 - Flushes and Bowel Disturbances becoming more frequent and I began to be concerned about them. I finally mentioned them to my Family Doctor. At first we pointed at stress. The Danish company that I was VP of Manufacturing of was shutting down USA manufacturing operations which was going to leave me with no job. Needless to say my stress level was very high during this period. My family Doctor put me on several stress medications. They helped the stress problem but really did not alleviate the flushing and bowel disturbances.

1998-1999 - Medication for stress no longer needed - I became comfortable in my new job as an engineer and the medication for stress is no longer needed. The flushing has gotten much more frequent and is now occurring after most meals. The flushing has also worsened. Approximately 30 minutes after beginning to eat my face becomes red and feels hot, my eyes become bloodshot. The flushing is also accompanied by stomach and intestinal gas and occasionally by sneezing and temporary hearing reduction. Usually I feel temporary fatigue at the end of the attack. I also experience very frequent urination for an hour or two after eating. A large meal of "good" food usually causes a far worse attack than does "fast" food. We look at food allergy. I keep track of what I eat and decide that this is not the problem.

Now that the stress problem is out of the way my Doctor begins to look at other things. The usual physical exam things reveal nothing wrong. Fasting blood sugar and other blood tests reveal nothing either. Although my blood pressure tends to be borderline high and EKG reveals no problem and we rule out any connection here. Because of the connection with eating my Doctor orders a glucose tolerance test. AHA!! We find that I do have a problem here. About 30 minutes into the test my blood sugar level is WAY above normal. After an hour it is coming back down. After 2 hours it is below normal (the fatigue) and then at 2 1/2 hours it is solidly exactly where it should be in the middle of the normal range. He and I agree that this is probably the cause of the problem. (I now know that the glucose intolerance was probably due to the enzyme release by the tumors after eating) My Doctor has still never seen one of these occur and I doubt that he realizes how severe they are. He suggests that I try eating smaller meals more often. This does not help and is a large nuisance too.

Late 1999 - Elevated PSA - More blood tests are run and an elevated PSA is seen. Now a trip to the Urologist and prostate tests. A very enlarged prostate gland is discovered but no cancer. Still no help as to the flushing. My Doctor now suggests that maybe there is something to "male menopause". Tetesterone level is checked and found to be normal.

Dec. 27, 1999 - Six Nosebleeds in one day - Also sinus headaches. Back to the Doctor. He prescribes an antibiotic for the apparent sinus infection and after examination of my nose says that he sees no problem that requires medical intervention. During the same examination he remarks that my ears look like "they have been through a war." The nosebleeds probably were caused by the sinus infection and my constant blowing of my nose but they were no doubt made worse by the repeated dilation of the blood vessels because of the flushing. Rough looking skin on my ears was caused by the same thing.

Mid January 2000 - Flushing and Digestive Disturbances Are Becoming a Big Problem - Now that the sinus infection is done with and I have no other known illnesses the flushing and digestive disturbances are becoming a big problem. Splashing lukewarm water on my face gets rid of the flushing and eye drops clear the eyes but the fatigue afterward happens regardless.

Jan. 31, 2000 - To An Endocrinologist - Back to the Family Doctor - Because of the known Glucose Intolerance test results he sends me to an Endocrinologist. The Endocrinologist runs Thyroid and other tests and finds nothing amiss. He explains that the rapid rise in blood sugar is probably happening because I am probably missing the big pulse of insulin that is supposed to be released by the pancreas when I eat. He says it is not a common problem but it does occur sometimes. He puts me on Glucophage which is supposed to alter the absorption of sugar and should eliminate or reduce the problem.

Feb. 29, 2000 - Glucophage Doesn't Work - After one month I go back to the Endocrinologist and tell him that this has had no effect at all. This time I ate my lunch in the car on the way to the Doctor's office so that he would get to see a flush. I don't think that he had visualized before seeing it exactly what I had been trying to tell him. The Endocrinologist and his Physicians Assistant put their heads together and suggest a 5-HIAA test. The P.A. says that it is a long shot and will probably come back negative but that what I have is a symptom of Carcinoid Cancer. This is the first time anyone has used the big "C" word and I am very frightened.

Mar. 4, 2000 - 5-HIAA Test - Today I do the 5-HIAA test and then Monday will take it to the lab to be tested.

Mar. 10, 2000 - 5-HIAA Test VERY Positive - Phone call from the PA. The test 5-HIAA test has come back VERY positive - 90 - should be less than 10. I immediately go to the Internet to learn about the disease. The Doctor schedules me for a CT scan of the abdomen.

Mar. 16, 2000 - CT Scan of my abdomen - and pelvic region shows multiple cystic and solid lesions on/in my liver. The two largest are 4 and 5cm.

Mar. 22, 2000 - Needle Biopsy - of the largest tumors - Initial and subsequent examination of the tissue removed confirms the diagnosis of Carcinoid tumors.

Mar. 24, 2000 - CT Scan of my chest - the tumors on my liver were visible but my lungs and chest are clear..

Mar. 27, 2000 - A visit to an Oncologist - who schedules an Echocardiagram and an Octreoscan.

Mar. 29, 2000 - Echocardiagram - of my heart - all is OK. I have suffered no heart damage.

Mar. 31, 2000 - Octreoscan - to determine the presence of any tumors that the CT scans may have missed, including the probably very small primary/original tumor. This involves injection of a mildly radioactive isotope which is attracted to and settles in carcinoid tumors. A radiation scan is then made of my entire body and the tumors will "light up" and make their presence known even if they are small. Once these things are done my new Oncologist (cancer doc) will be able to make intelligent decisions about treatment.

The Octreoscan shows the known liver tumors and also a very bright spot in the center of my abdomen - this is probably the primary tumor. The radiologist feels that the primary is probably located in the "root of the mesentery midline" but the Octreoscan does not give clear enough definition to be sure of this.

Apr. 3, 2000 - A second visit to the Oncologist - We discuss various treatment options and he recommends that for the time being I try Sandostatin. It is his opinion that a new treatment being developed to cure Carcinoid Cancer will be ready for general use in about a year and that as long as we can control the tumors there is no need to go to "heroic" and painful measures at this time. He sends me back to the Endocrinologist for the dosage and such for Sandostatin.

Apr. 4, 2000 - Sandostatin SubQ 150 mcg/day - Tomorrow night I will begin self-administration (by me!!) of 3 times daily subcutaneous (in the fat on my stomach) injections of 50 mcg of Sandostatin. I have to wait until tomorrow because no drugstore in town has this very expensive medication on hand (Also thank goodness for medical insurance). These injections should control the symptoms and may retard or even regress the tumor growth. If my body tolerates this medication OK for a month, we may switch to a new form of Sandostatin which is administered monthly. Today I gave myself, under a nurses tutelage, a practice shot of saline. I did not feel so much as a pinprick - totally painless - ain't modern medicine great - those of you my age will remember bigger and duller needles in our youth that downright HURT. The tiny new ones do not. It remains to be seen if the medication will hurt.

April 11, 2000 - Sandostatin SubQ 300 mcg/day - Although there were some nasty side effects (headache, diarrhea, cramping, gas pains and difficulty urinating) for the first few days, they have cleared and I now seem to be tolerating the shots and the Sandostatin well. The flushing is just about gone. The Doctor tells me to increase the dosage to 100mcg three times a day. I decide to ramp up to it 10mcg at a time to help minimize the severity of the side effects and to hold at each level until the side effects clear. The side effects returned at a high level for the first 2 levels but then became tolerable and I moved on up to 100mcg in several days without undue difficulty.

April 17, 2000 - Sandostatin Side Effects Almost gone - Sandostatin at the 300mcg per day level that the Doctor wanted. I am still having some bowel disturbances but they are tolerable.

April 24, 2000 - Feeling Good! - are for all intents and purposes gone. I feel better than I have in a long time.

Apr. 26, 2000 - A Visit to a Cancer Surgeon - Now I am really scared. We talk about various treatment options as he does have some experience with this rare disease. He orders a Small Bowel Study.

May 5, 2000 - Xray Small Bowel Study - This procedure involved drinking some 10 large cups of a barium solution during the several hour procedure. Xrays were taken at 15-20 minute intervals throughout the procedure. At the end of the procedure a fluoroscopic procedure was done with live images on a TV monitor. As the radiologist pressed lightly on my abdomen the small intestine could be seen moving around. No obstruction, abnormal tethering or separation of the intestine loops was seen which means that at present at least I don't have to worry about intestinal blockage and the immediate surgery that would be required to correct it.

May 10, 2000 - Second Visit to the Cancer Surgeon - He explains that he cannot cure me with surgery because of the wide spread of the disease. He further explains that he could remove part of the tumors on my liver and perhaps find the primary and remove it. It is his recommendation that since the Sandostatin is working and his surgery would only be to reduce symptoms temporarily he sees no need for me to have to suffer through that. He further explains that since I have no intestinal blockage at all there is no need to do surgery for that reason either. We make an appointment for November unless of course I experience problems and need him sooner.

June 5, 2000 - Another Visit to the Endocrinologist - At this point I am very comfortable with the self injection of Sandostatin - about 270 self-injected shots by now. The shots very rarely hurt at all. Except for some pesky digestive problems it seems to be working well. I have not had any flushing at all for quite a while now. I do my shots at 6 AM, 2 PM and 10 PM We decide that for now my course of treatment is correct and schedule another appointment for October.

Late June - Flushing After Lunch - The digestive problems and a feeling of a little tiredness are still occurring after eating - especially after lunch. I alter my shot schedule to a couple of hours later to bring the shots closer to meals; 8 AM, 4 PM and midnight. This seems to help.

Early July - Sandostatin Failing in 7 hours on Weekdays - I am finding that I feel very tired and a little hot about the ears on many Weekdays at about 3 to 3:30PM; the effect is worse on more stressful days. When I give myself the 4 PM injection, I feel rejuvenated within 10 to 15 minutes. It seems that the Sandostatin may not be at a sufficient level to control the tumors at that time. Not wanting to increase the daily dosage unless I have to, I try giving myself that afternoon injection at around 3 PM and leaving the remaining schedule as it is. This works!! On weekends when I am relaxed at home I maintain the 4 PM schedule and even later without experiencing any difficulties.

July 29, 2000 - Excess Heart Rate After Exercise - I return home from vacation to find that a very large and out of control shrub (20 feet tall) has bloomed and collapsed across my next door neighbor's driveway. I decide to cut it almost to the ground and let it regrow but keep it under control. The cutting went fine but as I dragged the large branches up the hill and into the woods behind my house I found that my heart rate was far greater than it should be although I was not out of breath at all. I moved smaller loads and rested between them until my heart rate returned to normal. I had read that heavy exercise as well as stress could trigger the tumors and should be avoided but had not experienced it. I suspect that the tumors secreted enzymes which drove my heart rate way beyond what was needed by the exercise that I was getting. And instinctively I would guess that this would be harmful if it were allowed to continue. I mention this to warn other Carcinoid patients.

Aug. 30, 2000 - Increasing Digestive Difficulties - For the past several weeks I have had increasing difficulty with the digestive problems (gas, bloating and steatorrhea) and also have had some hints of flushing (warm ears) at times. I suspect that I may need a higher dosage level but am studying some recently found dietary information. I have already severely reduced my caffeine intake and that seems to be helping some and will do a few other food related things - more on this later. If you are a Carcinoid patient this dietary information can be found at the Carcinoid Cancer Foundation's Website. The presentation is entitled NUTRITIONAL CONCERNS FOR THE CARCINOID PATIENT and was presented by Monica E. Warner, MS, RD, CDN. I have already validated some of her material by my own experience and intend to try more of it.

If my food related experiments do not do the job then it will be back to the Doctor before October to talk about increasing the Sandostatin. For the Carcinoid patient: If you have not figured this one out already, you MUST be pro-active in your treatment and learn all you can. Because this is such a rare disease there is very little in the way of standard treatment for it. I feel as if I may know nearly as much about how the disease usually acts as my Doctor although his knowledge of what goes on in my body is far greater than mine so I must rely on him to determine what will work and not work in my body to control the tumors. We are learning together what works and what does not work.

Sept. 8, 2000 - Dr. Warner - of the Carcinoid Cancer Foundation called me on the telephone today on a subject related to my website. While on the telephone I asked him his opinion of my Sandostatin dosage as relates to controling tumor growth. He indicated that for maximum theraputic effect, and if my body can tolerate it, I should probably ramp up to 600mcg per day of the daily version and then work towards 30mg per month of the LAR monthly version. The LAR should stabalize the peaks and valleys of medication in the body that occur with the daily version of Sandostatin. The actual dosage must be determined by my Doctor who is monitoring my body chemistry, gall bladder condition and the like.

Sept. 11, 2000 - Oncologist Visit - I visited my Oncologist today and passed along the information from Dr. Warner as well as some other printed material from the CCF site. He was glad to have the info from the CCF. I also told him that I was having some symptoms such as digestive discomfort and hints of the beginnings of flushing near the end of my medication cycle. He agrees that I need to be at a higher level of Sandostatin and on the LAR (monthly) version too. He will talk to the Endicrinologist about this tmw and one of them will call me. The amount of increase will depend somewhat on tests that the Endicrinologist has and will run - ie gallbladder condition. We have also scheduled a follow-up CT scan late this month to see what the tumors are doing if anything.

He was not particularly surprised at my complaint of digestive discomfort, gas, bloating and steatarhhea. He said it could be the tumors or a side effect of the Sandostatin. I did have some of this before I had ever even heard of Carcinoid Cancer so I suspect it is probably mostly the tumors. If so increasing the Sandostatin may help. It is not debilitating, only annoying and uncomfortable. My Oncologist also recently checked on the status of the "cure" and it is still about a year from release. For more information on this "cure", please go to my Carcinoid Described page and read the first paragraph of the Future Developments section.

Sept. 14, 2000 - Switch to Sandostatin LAR - I talked to my Endicrinologist's nurse today and have set an appointment for next Thursday to begin Sandostatin LAR. My wife, Lois, will go with me and be instructed in the administration of the LAR. According to the nurse I cannot do this one myself because I can neither see nor reach the proper location - We will see about that, but to begin with Lois will learn to do it. We start with 20mg of LAR once a month and for the first two weeks I will continue the subcutaneous version too at the current 300 mcg per day level. After that maybe rescue injections - maybe not. The goal is to eventually go up to 30 mg per month of LAR. Hopefully this will completely control the symptoms and retard or stop tumor growth as well.

A side note about how well Sandostatin works: This morning I ate breakfast in the car as I was leaving town for work in DC (I usually don't eat breakfast but today I was hungry). Normally I am at work before 8AM and give myself the first injection of the day at 8 AM. This morning I was stuck in traffic and did not arrive at work until almost 9 AM. At 8:10 AM in the car I had a full blown Carcinoid Crisis - a flush the likes of which I had not seen since before I started Sandostatin...red face and eyes, sneezing and stuffy head. Also was very bloated and needed a restroom. I was unable to easily get off of the road; we were nearly stationary for 30 minutes but not enough so that I could do the injection. I arrived at work at 8:50 still "in crisis" and after a quick trip to the restroom did my morning Sandostatin injection. Within 10 minutes the "crisis" was waning and in 20 it was completely gone. The stuff really does work!!

Sept. 19, 2000 - Visit to the Urologist - All is well here for now. Prostate is still enlarged but the Urologist feels that there is no problem to be concerned about. Because it is 60ml though, it does need to be watched. Surprise, Surprise! this doctor is very familiar with Carcinoid Disease. We scheduled another appointment in one year.

Follow up - Results of the PSA are in - 9.6 this time as opposed to 6.8 early this year. Since he got a negative biopsy 6 months ago and cannot feel any abnormality other than the large size, we will recheck it in 6 months. Not good but maybe just due to the large 60ml size.

Sept. 21, 2000 - First LAR Injection - The claims of pain are over-rated - I am glad of that!!! Today we visited my Endicrinologist's office and were instructed in the administration of Sandostatin LAR at the 20mg level. I mixed it and my wife gave me the injection. Two nurses watched and prompted us where the package instructions were not sufficient or we were not adept enough. No real issues with the mixing except that it settles out of suspension very rapidly. Just before sucking it up into the syringe we had to "swirl" it again to insure an even mix; the instructions don't say that. As for the injection itself, there was very little pain; it felt more like a minor muscle cramp. I have had other shots that hurt much more than this one, even though the needle is LARGE. In this case quick is better. How well will it work? That I will have to tell you later. For the next two weeks I will continue the Sandostatin SubQ shots. After that I will try stopping them and if symptoms do not occur will not do them anymore. Failures of the LAR are possible though so I will have to keep the SubQ available and if I experiance the syndrome go back to it for two or three days. I will post more explicit material on method on the Procedures page shortly.

Sept. 28, 2000 - CT Scan of Chest, Abdomen and Pelvis -
Chest: All clear
Abdomen:
1. Liver - multiple lesions - some cystic and some solid. NO NEW LESIONS IDENTIFIED! Several lesions were measured, including the biggest 5cm one. As best they can tell they are THE SAME SIZE THAT THEY WERE IN MARCH!
2. Root of the Mesentary - "At the root of the mesentary there is an approximately 2.5cm soft tissue mass smaller than before, previously 3cm. No new lesions identified."
Pelvis: "There is no free fluid in the pelvis (whatever that means?). the prostate gland is enlarged and prominent." This was not news as I also visited the URologist this week.
The Radiologist's final comment is: "Stable lesions in the liver. Slightly smaller soft tissue mass at the root of the mesentary."

The mesentary mass was not initially identified on the CT scan. It showed up brightly on the Octreoscan and I would assume that they went back to the original ct and found it. Since it is soft tissue, very similar to the normal tissue, it would not be easy to see if you did not know where to look.
I don't want to read to much into the shrinkage at this point as nothing has been done that would have caused it and the 5mm change is pretty small. The most important thing overall is that no new tumors have been found and there is no discernable growth in a 6 month period.

Oct.14, 2000 - Sandostatin LAR Progress -
At the two week point after the first LAR injection, I attempted to stop the SubQ injections. It is obvious that the LAR level is building in my body but also obvious that it is not high enough yet; After about 10 hours without a SubQ injection, I began to have the first symptoms of a flush - warm ears and stuffy nose. Before the LAR injection this would have happened at about 6 to 8 hours. I tried again the next day with similar results and then decided to continue the SubQ for another week. As the week progressed I had increasing digestive system distress in the form of severe bloating, gas and frequent and very smelly bowel movements. I suspected that this might be because of the Sandostatin rather than the tumors as the discomfort was similar to what I experienced when I first started the SubQ injections of Sandostatin.

Wednesday night - 3 weeks after the LAR shot - I discontinued the SubQ again. This time there was no flushing until midday Friday. And the digestive discomfort went away almost immediately. Late Friday afternoon I gave myself another SubQ injection. The flush faded but the digestive discomfort in the form of some cramping and bloating returned. I decided that the minor flushing was easier to tolerate than the other and did not do another injection. Today the flushing symptoms have almost completely subsided as has the digestive discomfort. On thursday my wife will give me the next LAR injection.

Oct.20, 2000 - Sandostatin LAR 20mg Second Shot -
This afternoon my wife gave me the second shot of LAR. As before there was no significant pain at the time of the injection. As before after about 30 minutes I developed what I will call a "hitch in my get-along"; not really pain but some stiffness and perhaps a dull ache, especially when climbing steps. I have experianced something similar after doing some mountain climbing. If it goes as before it will clear up in a few days. It is position related so it does not really interfere with doing anything, including sleeping, as a slight change in position will usually stop any ache from it.

We also had the nurse do some drawing on my buttocks so that I could produce a "check picture" for future use at home. This technique will allow us to be certain that we are in a "safe" location for the next injection. See my Procedures page for more on how to do this.

Nov 8, 2000 - Progress Report -
I have not done an update recently because there really is not much to say but several people have asked so hear goes. Several times during the last 2 months I have experianced some "breakthrough" of Carcinoid Syndrome primarily in the form of flushing, "stuffy" nose and fatigue. the first couple of times I gave myself a 100mcg injection of Sandostatin SubQ. Both times I experianced rather "heavy" digestive system distress that was similar to what I experianced when I first started the SubQ. I decided that the "cure" was worse than the disease and that unless the breakthrough continued for awhile and was especially severe I would simply wait for it to subside by itself. That has worked until today.

For the past several days I have had a lot of bloating and some occasional feeling of hot ears. Today my ears have felt hot all day and I have had the warmth begin to creep into my checks several times. This afternoon someone told me that my face appeared a bit red and my eyes were bloodshot. So tonight I did a 75mcg SubQ shot. Within 15 minutes the flushing and fatigue were gone. As before the bloating became a bit worse but this time the benefit exceeded the discomfort. I will probably do a couple more SubQ shots and we will see where we go from there.

My perception is that since I never really had the diahrea part of Carcinoid Syndrome that the slowdown of the digestive system is more than I need and that this slowdown and inability to easily clear my bowels is probably what is causing my "most-of-the-time" digestive system discomfort. At the same time I did have pretty severe flushing and fatigue and the Sandostatin does an excellent job of controling that. If any other Carcinoid patient has experienced and successfully dealt with this "mismatch" I would really like to hear from you. The discomfort is not debilitating but it sure is annoying.

Nov 18, 2000 - Sandostatin LAR 20mg Third Shot (at home) -
On Wednesday of this week I saw my Endicrinologist and my Surgeon. Both were pleased with my progress or rather the lack of progress of the tumors. The Endicrinologist seemed mildly surprised that I had not had much "breakthrough of symptoms with the LAR. The Surgeon re-iterated the symptoms of blockage and told me to contact him immediately if they occur. Symptoms are serious vomiting, abdominal pain and inability to pass gas. Since almost all gas is air ingested through the mouth, if you are passing gas then you do not have a blockage.

Today we did the third LAR shot and the first one at home without the nurse's help. We used the photo method detailed on the procedures page to confirm the correct location, my wife practiced her thrust with a capped needle and then I mixed the LAR. My mix was much more uniform than last time and my wife did a superb job with the injection. She even missed all of the blood vessels - no bleeding this time and no pain at all during the injection. My hip is slightly sore now so I know that she did get it in the muscle as it is supposed to be.

Dec 16, 2000 - Sandostatin LAR 20mg Fourth Shot (at home) -
Today we did the fourth LAR shot and the second at home. We learned the importance of keeping a spare needle on hand too! We prepared for the shot and located it using the photo method detailed on the procedures page. I mixed the Sandostatin and loaded the syringe. My wife stuck the needle in the appropriate spot BUT when she tried to inject the Sandostatin she was unable to move the plunger. She quickly removed the needle from me, changed to one of the spare needles we had purchased, swirled the syringe to insure a good suspension and reinjected the LAR in a diferent spot. This time it worked OK. Had we not purchased the spare needle we would have wasted $1300.00 worth of Sandostatin.

The past month has been a very comfortable one. Except for the last couple of days there has been no breakthrough of symptoms and the side effects of the Sandostatin have been less too. I used three 60 mcg shots of the SubQ during the last couple of days to control the small amount of symptoms. My Oncologist seems pleased with my progress.

Jan 13, 2001 - Sandostatin LAR 20mg Fifth Shot (at home) -
Unlike last month, the shot yesterday went great. Got a good mix with no residue left in the syringe afterwards. Those of you who take this medication know that this is something of an accomplishment as it is difficult to get a uniform suspension and to inject it while it is still in that form.

The past month has been less than a comfortable one. The first 2 weeks were OK but by the third I began experiencing some digestive distress. During the early part of the fourth week I began to experience some flushing also and started supplementary SubQ injections which I continued through yesterday morning. I expect that the reason for this is that we lost part of the Sandostatin last month in the needle failure.

As usual, I experienced no discomfort at the time of the injection but had a sore hip beginning about 1 hour afterwards. I also experianced some intestinal cramping and mild pain about two hours after the shot that continued until this morning. I am back to normal now and looking forward (I hope) to a month with little or no discomfort.

Feb 12, 2001 - Sandostatin LAR 30mg Sixth Shot (at home) -
Like last month, the shot Saturday went great. Got a good mix with no residue left in the syringe afterwards. You will note that the dosage has been increased from 20mg to 30mg. Even though I got a good January injection, I began experiencing the same dificulties as before at the end of the third week. These problems included diahrea/cramping and some minor flushing - the 2 main Carcinoid Syndrome symptoms. I did a couple of low level SubQ injections but the diahrea continued. My Doc agreed with me that the level needed to be increased to 30mg and wrote a new prescription. Hopefully this will alleviate the problems once and for all.

Be sure to keep your medical insurance in force. The price of the 20mg was bad enough but the SINGLE 30mg shot costs $ 1932.00!!! Even though my insurance is paying the tab, this price is positively obscene!

Mar 12, 2001 - Sandostatin LAR 30mg Seventh Shot (at home and then at the Doctor's office) -
The shot did not go well this time. In fact we had a totally failed injection on Saturday with the loss of the entire $1923.44 dose of 30mg LAR. I mixed it just like I have always done, changed the needle, handed the syringe to my wife and "assumed the position". When she tried to inject, the plunger would not move. This is the second time this has happened and I had extra needles on hand.

I assumed a stopped up needle, changed it, agitated it in the syringe and we tried again. And again we had the same result.

This time I changed the needle, upended it and squirted a tiny bit out to insure that the needle was clear - It was. And a third time, same result.

Out of desperation I tried the needle that I used to mix as I knew it was open. No go again. By this time we had lost 1/2 of the LAR and I was at a loss as to what to do next.

I turned the needle up and found that it was indeed open and so assumed that the problem was with the LAR itself or the syringe. By this time there was not enough left to do the injection so I took it to the druggist. He ordered another kit to arrive today and said that he would call Novartis first thing Monday. Novartis immediately agreed to replace the kit free and gave him the new mixing techniques that will be found on my procedures page. I later talked to them myself and they gave me the info directly. They said that the brochure needs to be rewritten as "this is a new drug and they are just learning about the best techniques now."

Although she has been doing and excellent job with the injection, my wife refused to do it again as it really has been causing her a lot of stress anyway, so I went to the Doc and I mixed it and had the nurse do the injection. We had no problem whatsoever with the additional techniques above. The nurse was very interested in the info because they have another Carcinoid patient and had a similar experience in the office with her last month although they did manage to get the injection done anyway.

Last month's 30 mg dose of LAR worked well -- no breakthrough at all. The prior month on the 20 mg it failed at the 3 week point, I went on SubQ and it was 1.5 weeks into this month before the new 30 mg level injection took hold and brought everything fully under control. This time I made it through the month and hopefully everything will continue to remain under control. It is a great drug. Thank you Novartis!

I visited my Oncologist today, Mar.13, and he says that he can still feel no liver enlargement. Based on how I feel, which is pretty good, it is his opinion that I have no significant new tumor growth. I see him again in 3 months.

April 9, 2001 - Sandostatin LAR 30mg Sixth Shot (at the Docs office) -
A very competant nurse gave me the shot at the Docs office this time. I mixed and she stuck. Using the new procedures from Novartis, we had no problems at all. The past month has been largly uneventful. I had no "breakthrough" of symptoms at all thanks to the 30mg LAR and the constipation, diahrea and bloating problems, while not gone, seem to have eased a bit. Hopefully it will continue to be so.

June 11, 2001 - CT Scan of Abdomen and Pelvis, etc.
The report from this CT-scan was somewhat disturbing at first. The radiologist reported that the largest tumor had increased in size from 5cm to 4 x 6cm and also that the other lesions seemed to be "more apparent" and "greater in number". She also said that the primary mesentary tumor was unchanged. Everything else looked OK to her. My Oncologist pointed out that in nature things do not grow at a constant rate and this may just be a "growth spurt." In his opinion the change is very small and not something to be concerned about unless the advancement continues.

The Sandostatin LAR 30mg shots continue to go well. I mix and the nurse injects. It is controlling the symptoms relatively well, I think. The flushing is completely gone although I still alternate between multiple loose stools per day and constipation with little in-between. Gas and bloating are an almost daily issue but that seems to be the way of this disease. It is not pleasent but is tolerable. Otherwise my health continues to be excellent.

Sept. 12, 2001 - CT Scan of Abdomen and Pelvis, etc.
The report from this CT-series is much better. The size of the large tumor is once again reported to be 5cm, which is the same size that it was when first found 2 years ago. There are no new lesions on my liver and the primary mesentary tumor is unchanged in size too. So I seem to have stability and can afford to wait for a cure to be discovered.

The Sandostatin 30mg LAR shots continue to do their job. I have not had to do a rescue injection of the quick acting Sandostatin in many months. I highly recommend the LAR to any Carcinoid patient. The medication level stability and hence comfort is far better than with the 3 times daily SubQ version.

Oct. 26, 2001 - Visit to Urologist
I visited the Urologist about a week ago and he feels that my above normal PSA reading (which has dropped from 9.6 to 7.2 since the last visit) is due to my very enlarged prostate and nothing else. He has put me on Flomax to control the urinary retention and frequent urination problems that my prostate is causing.

After a week I can tell you that this drug works and without any side-effects. The very first night that I took it I slept 4 hours without waking - something that I have not done in a few years. And a couple of days ago I was stuck in traffic on the infamous I-95 for 2 hours without any significant distress - Also something that 2 weeks ago would have been excruciating. Finally, I usually have very bad urinary retention problems the first day or two after my LAR shot - this time there were none! So for the men out there who have an enlarged prostate and if your urologist suggests Flomax, Try it, You'll like it!

Mar. 27, 2002 - CT Scan of Abdomen and Pelvis and Chest
Super News!! The scans show the tumors at the same size they were when I was first diagnosed 2 years ago; and there are no new tumors either. Apparently I am in the group of people for who Sandostatin provides not only symptom relief but growth control as well. For this, I am very thankful. The scan also shows further enlargement of my prostate and the recommendation is that more testing needs to be done to check for a possible malignancy here. I am already scheduled to see the Urologist soon and will find out about this then.

April 23, 2002 - Visit to Urologist
More Good News!! The Urologist does not think that the additional prostate enlargement is anything unusual. He says that what he sees is just a natural progression and that I should not be concerned about it. My PSA remains around nine which is high but not dramatically so. This seems to be a normal reading for me and my 60ml prostate. The Flomax continues to do what it is supposed to do most of the time and although I do make more trips to the bathroom than most people it is much better than it was without it.

February 2007 - Various
A full set of CT scans last month (JAn 2007) look exactly like the original ones done in March of 2000. This makes seven years now with no new tumors and no measurable increase in size of the existing ones. Since I have had no treatment except Sandostatin (currently LAR 30mg) I have to credit the Sando with controling not only the symptoms but tumor growth as well. This reinforces my strong belief that ALL Carcinoid patients should be on Sandostatin of one form or the other.

Most of the Carcinoid experts think so too and a study is currently under way by the The Carcinoid Cancer Foundation, Inc. that they hope will prove that Sando offers growth control at various levels to as many as 80% of Carcinoid patients.

My PSA continues to be high and I have to make more trips to the bathroom than most people but so far there is still no evidence of anything other than age related enlargement. For this I am grateful.

Don't look for frequent updates to this page. There really has been no change in anything Carcinoid related in a long, long time and I hope that it continues to be so.

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