COCOACITY

COCOACITY's Recent CancerCompass Activity

• COCOACITY has replied to a post on the message board

  Kenny's, I just saw there was a message board and I am not sure if I answered you or not as I had many unread messages. My email is Message edited by CancerCompass staff. For personal protection,email address removed. Consider private reply. Please review CancerCompass Member Guidelines athttp://www.cancercompass.com/common/guidelines.html  ifyou want to write me directly about the PRRT Sorry if I ignored your...

  September 14 at 1:25 AM view post

• COCOACITY has replied to a post on the message board

  I hope that you look into Hospice as it is a free program paid for thru Medicare or Medicaid. Drs write an order for this and don't put them on it until they feel they have 6 months to a year only left to live. As a former Hospice nurse, I can tell you that you will be very pleased with this program as their goal is to help make him pain free and have support available for the family. good lick and God bless you, ...

  September 06 at 10:34 AM view post

• COCOACITY has replied to a post on the message board

  Just had an Octreoscan and ct done and results show that my tumors are the same as the scans done in 2007 so looks like the PRRT might just be worth adding a few more years on to my life. Amazing, huh? Just isn't fair though that the people who have money can get this done and the people that don't can't. Doesn't seem fair. I understand that Novartis is trying to keep this out of the US....it's always a money thing,...

  July 29 at 11:59 AM view post

• COCOACITY has replied to a post on the message board

  I take pancreatic enzymes (3 creon) before eating anything but I still get diarrhea...the floating poop! There is very little that I eat that doesn't cause this. I met with the carcinoid nutritionist that works with dr Woltering and she suggested rice and dry baked potato. I really do try to be somewhat compliant but doubt I eat more than 600 calories a day. I have marinol for appetite stimulation as I seldom feel h...

  June 17 at 2:58 AM view post

• COCOACITY has replied to a post on the message board

  Why hasn't your doctor out you on sandostatin for the symptoms?? You need to see a specialist in carcinoid like the dream team docs in Kenner , Louisiana. They are the pros and well worth the visit. Goodnluck to you, Rhonda

  June 16 at 7:24 AM view post

• COCOACITY has replied to a post on the message board

  Boy I wish someone would post an answer to this one. I've consistently lost 1/2 lb a month since 2006 I started out at 126 lbs....I am 5'7" and currently am 87 lbs. I try to avoid sugars and fat and stick with the carcinoid diet avoiding tyramine. I am sure that I won't die from carcinoid but will croak from malnutrition! I'm a picky eater anyway and taking my sugar and fats away is a problem. It's hard to gain we...

  June 16 at 7:19 AM view post

• COCOACITY has replied to a post on the message board

  Please add me as a friend. I am new to using this and not sure how this is done. This was my first post so let me know what to do Rhonda

  June 15 at 10:24 AM view post

• COCOACITY has replied to a post on the message board

  I had the PRRT last year in Switzerland. They gave me 2 treatments a couple of months apart. The cost was $10,000 for each treatment plus expenses such as air and hotel, etc. they want you to stay in the hospital 3 days and then remain in the country for another few days. The treatment was an IV push that took about 15 seconds. This is supposedly going to give you another 5 years till tumors start growing and ano...

  June 14 at 2:52 AM view post