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carcinoid cancer w/liver involvement

rew
Posts: 1
Joined: Jul 2011

Interested in communicating with others with similar problem. I am presently taking 40mg Octreotide monthly. Started about 18 months ago. It stopped the facial flushing but never had the diarrhea that many others have. Feel very lethargic and run out of steam when getting up after sitting or driving for a while. Condition improves if stay on feet, but deteriorates when climbing stairs or carrying anything. Blood pressure has been elevated for about a year so was on 2 B/P medications. Strangely B/P has reduced so I have, for now at least, discontinued them. I have put myself on a strong fruit diet particularly alot of blueberries and red grapes. I've cut out red meats for the most part. Eat much more fish than before. The rest is chicken and pasta, American cheese and raisin or whole wheat bread and also alot of cottege cheese.I also do oatmeal when I can. Doctor says my cholesterol is that of a 20 year old. I replied I wish everything else was that good. I'm 79. Since taking Pravistatin my cholesterol level has significantly gone down. Appetite has diminished over past 3 weeks and have lost about 8 pounds. This has coincided with reduction in B/P. I am looking into freeze dried BLACK rasberries which google indicates are helpful for my condition. They appear to be expensive. Anyone out there have a good source?

Hope to hear from you, REW

pbwtok
Posts: 3
Joined: Oct 2011

We are new to this site. My husband was diagnosed with carcinoid mets to his liver on 11/11/09, 1 large tumor(about 6 cm) and 4 or 5 smaller ones within his liver. We went to M D Anderson. They recommended monthly Octreotide injections to reduce flushing/diarrhea and hopefully to slow down the growth. They have helped with the symptoms, but the tumors continued to grow, largest now 10 cm. They recommended we proceed with the y-90 (sirs spheres) which we did on 10/12/11. My husband felt very bad for about 1 week, I am happy to say he is beginning to feel better now. We will have a follow-up scan in several weeks to monitor his progress. He had the procedure locally, we did not travel to Houston. They say in about 4 weeks, he should have the left side of the liver done. Hope it will go well. His BP (which used to be fairly low) has increased steadily over the past year, we assume it is due to the injections, but we are not totally sure. His cholesterol has been well under control with pravachol for several years. He did not seem to have fatigue until after the radiation procedure, hopefully that will resolve. He has regular ct scans to make sure the cancer has not migrated to his lungs, so far, so good. Have you had a recent scan ? Are you a candidate for the yttrium? Have they suggested any other treatments? We are all learning as we go!

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