My Wife’s Carcinoid”
December 7, 2007 (by Vernon Holt)
As far as we can recall, Lillian has had problems with diarrhea for about 12 years. As the situation worsened the local doctors suspected and tested for Lactose Intolerance, IBS and Crohns, all with negative results. Throughout 2005 the situation worsened (average 14 episodes a day) until, by September, pain then entered the picture. Throughout that month Lillian couldn’t eat any solid food at all and subsisted solely on small bowls of clear soup. Finally, intense pain landed her in the hospital where a surgeon was chosen to perform an exploratory operation. A large nasty tumour (as described to me) was removed from her upper intestine along with about 2 feet of intestine, the ileocecal valve and about 1 foot of the lower bowel. That was October 6th 2005. Going into the operation she was down from 149 pounds to 108 pounds. (Now down to 91 pounds).
We received the diagnosis of Carcinoid Syndrome on Oct. 21st and met Dr. X at the X Cancer clinic on November 14th. Since then we’ve had many visits to the clinic with all the various scans etc. and after a few months of sub-cutaneous started on LAR 20 then LAR 30. A recent attempt at LAR 40 fell through when we realized it would take 2 separate needles. The target areas are so small now and Lillian’s frailty make it quite a problem for her so we are now doing LAR30 with a few “under-the-top-of-the-arm” subcutaneous of 100ml. There’s just no fatty tissue anywhere else.
A CAT scan of October 24th, 2007 showed an enlargement of an arterial enhancing lesion near the junction of segments 6 & 7 in the right lobe of her liver. It now measures16 x 13 mm compared with the dimensions in 2005 of 10 x 11mm. There is also now a new early enhancing lesion located in segment 4 and measures 6 x 6mm.
On hearing this, at the last meeting with Dr. X on October 31st we requested a consult with X and his team at the X Health Science Centre. This past Tuesday we received a call for the first test in X, December 14th and 17th. A second test is scheduled for January 8th and 9th.
Lillian’s daily diarrhea incidents are now 8 per day on average and we’re hoping we can get some ideas on that. So far we’ve tried many many things, such as Imodium, Cholestyramine, naturopathic products to name a few. Our latest experiment is 2 capsules per day each containing 30 billion acidophilus bacteria to see if Lillian can conquer her extreme malabsorption. We accidently discovered at the outset through a minor painful incident that Tylenol 3 gave her about 8 hours relief and that’s how we’ve been able to get out for lunch or dinner and trips to Ottawa (we are in Cornwall). In preparation for the 5HIAA tests we have to switch to straight codeine, which doesn’t provide quite as long a window. These days she’s only getting about 5 hours relief so going to X is going to be quite a challenge and we’ll be travelling in stages with hotel stays along the way.