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 Gluten Intolerance, Lactose Intolerance, IBS and Crohn’s, 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 local Cornwall hospital where Dr. M. performed an exploratory operation. A large nasty tumour (as described to me) was removed from her upper intestine along with about 2 feet of the intestine, the ileocal 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. (We are now down to 91 pounds).
We received the diagnosis of Carcinoid Syndrome on Oct. 21st and met Dr. J. at an Ottawa hospital 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. An 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-arm” subcutaneous of 100ml. There’s just no fatty tissue anywhere else.
In April of 2006, Lillian suffered a full-blown stroke yet recovered quickly with no known after-effects, luckily.
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 measures 16 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. J. on October 31st, 2007 we requested a consult with Dr. K. and his team in London, Ontario. This past Tuesday we received a call for the first test in London, December 14th and 17th, 2007. A second test is scheduled for January 8th and 9th, 2008.
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 things, such as Imodium, Cholestramine, naturopathic products, to name a few. Our latest experiment was 2 capsules per day each containing 30 billion acidophilus bacteria to see if Lillian can conquer her extreme malabsorption – it didn’t work. We accidentally discovered at the outset of all this, 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 the hospitals in 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.
UPDATE JUNE 16, 2009
We made the two trips to London both in terrible weather but without incident and Lillian had an MBGH and an Octreotide test in spite of the Chalk River isotope problem.
On January 30th, 2008 we received word from London that Lillian was NOT a candidate for treatment to her liver tumours (Halce Procedure). They offered a future meeting with Dr. K. but we decided to wait and see what Dr. J. in Ottawa would say after seeing the London report.
We did meet with Drs. K. and R. in London in June and got the explanation we were looking for as to why she is not a candidate. In short, not enough cancer cells in concentration showing up in the tests. I suppose this could be looked upon as positive but somewhere along the line the liver lesions will have to be dealt with.
For some years, Lillian has also been having kidney problems and that has now finally been resolved. It turns out that a 25 year old operation for a damaged bladder uterer resulted in a clip being left in, which, over the years, had cut off the blood supply, so the right kidney is now fully out of commission and can’t be fixed Nothing to do with carcinoid but yet another glitch in the order of things.
In September 2008, new phenomena began - bowel blockages. Scar tissue from 2005 seems to be the prime culprit. These are very painful and sickening episodes that usually require hospitalization. We’ve had several 911 calls and have dealt with some at home ourselves. The latest local surgeon, Dr. M. to see Lillian on this subject has made some telling suggestions and so far, it seems to be working. It’s all about diet and it’s pretty stringent; small meals, small bites, drink fluids with the meal, and no fibrous food. This rules out most vegetables and all fruit. He also prescribed Lactulose and we’ve now worked out the doses to take, and when, in order to prevent an episode if possible.
On October 30, 2008, Dr. J. recommended a consult with Dr. M. a liver surgeon, at an Ottawa hospital. It was determined that Lillian was too frail to undergo surgery due to potentially more weight loss so it was decided to try Radio Frequency Ablation. Dr. P. carried this out successfully in Ottawa on April 29, 2009.
Meanwhile in January of this year, a CAT scan showed a lesion on vertebrae L2. It’s impossible to operate so if any pain or discomfort becomes evident, it will be treated in a palliative way by radiation. So here we are in mid June hoping for a rest from any more problems for a while. Lillian is still about 88 pounds and has shrunk somewhat in height She has mostly good days starting out with good energy but sinking as the day wears on. Still has diarrhea from 4 to 10 times a day, but we get out with the help of her Tylenol friend and, best of all, her spirit and her attitude is great. So far, over the recent years, we’ve seen 15 doctors/specialists/surgeons (not counting ER physicians). Stay tuned.
UPDATE DECEMBER 26, 2009
Lillian passed away today from complications after a series of intestinal blockages. Eating had become more difficult in the past months as so many foods were not digesting properly and ultimately pain again entered the picture. The final blockage was very severe and she was rushed to the ER and from there to ICU. An attempt was made to fit her with a Hickman shunt so that she could be fed through an artery but this created its own problems and unfortunately too many vital organs were compromised and she was too frail to win the battle.