Hello all,
I'm new to the group as a caregiver. My husband is suffering from this horrible disease. We both want to know if there is anyone out there that has lost their loved one to this cancer and what to expect in the end. Because our Dr CAN'T tell us? and he's the LEADING WORLD AUTHORITY ON THIS. Dr. Larry Kvoles from Tampa Moffitt. We have a leg up on most of you for my husband is a Dr himself. We are currently seeing a great Oncologist here in Celebration Florida, both these Dr's have collaborated with really no answers . All my husbands test results believe it or not come back normal. My husband feels far from normal!! Carcinoid is highly miss diagnosed and is called the Zebra of cancers. Dr Kvoles told us that he most likely had this cancer for 25 years being miss treated. About 10/11 years ago it was realized Carcinoid. In the colon metastasized to his Liver. Had it cut out but never found the primary. Lived with these weird symptoms for ever it seemed. Up till over 2 years ago things started getting worse, small carcinoid crises but never treated for them.
This past 7 months have been hell on my husband. Ended up in the hosp for 3 weeks with the worst carcinoid crises ever! That's when he received the SAR via IV, because sub-q made him vomit! he was doing pretty good with this therapy BUT couldn't go home unless they found a way to get the SAR at home. He still has his PICC LINE in from this and is able to give IV bolus, yes he still gets a bit sick from this. In addition he's on the pump AND LAR about 3000 micrograms a day and rising. He still feels sick. Remember when one goes on the pump and the SAR/LAD you are no longer able to get that Octri scan. We feel his tumors have progressed and spilling out all of these hormones. We heard that possibly with a constant flow of this drug may stall the tumors? one can only pray.
HERE IS SOME VERY STRONG ADVISED I'D LIKE TO GIVE.. IF ANYONE OF YOU THAT HAS THIS CANCER OR KNOWS OF ONE AND THE CANCER PERSON NEEDS TO HAVE ANY KIND OF SURGERY..PLEASE MAKE SURE YOUR SURGEON PREPS THAT PERSON WITH SAR/LAR BEFORE GOING UNDER THE KNIFE. This happened to my husband 2 years ago and sent him into a huge crises that aided in a 9 min cardiac arrest. The doc knew before hand of my husbands cancer but did nothing.
Is there anyone out there with the same stage as my husband or worse. What levels are you all on. Tell me your symptoms and the like. I'm not sure how much longer I have with my husband. He'll turn 47 in July.
Miss Geri