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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 6
I cant believe that it has been 4 years since I posted on this site. My husband George was first diagnosed with CC in December 2010 and had surgery Feb 2011. He then became a patient of palliative care in February 2013. Well he is still here!! It has been a real roller coaster but he is alive. When he first became palliative he was in serious pain and was very very ill even though he had successful resection in Feb 2011. His oncologist was no longer treating him so he was referred to Palliative. At that time, they told me to reduce my work hours, a hospital bed went into our living room and doctors and nurses were there daily. But he didn't die! Well he got better, took out the bed, cancelled the daily medical staff and went back to living. His pain has always been a struggle, since the surgery. Its been very hard to control. Since that time he has remained on disability but still managed to have a life. We have had a nurse come in once every 4 days to keep an eye on him as he is on strong pain meds. Over the last 3 years he has been in constant liver failure and now they say he is at End Stage Liver Failure but he has remained cancer free. His last scan was Dec 15 2016. Because it has been over 5 years since the cancer diagnosis he is now eligible to pursue a liver transplant so we have been seeing the Liver Transplant doctors although after much thought and discussion he has decided to NOT pursue a liver transplant. He has recently suffered Adrenal failure and is taking meds for that as well. Its a rollercoaster ride and its hectic but his day has not come yet. I know it will one day for he is getting VERY tired so we take it one day at a time.....
just thought i would give a brief update. since last post George has been hospitalized at least 8 times for delirium. He is in the hospital right now recovering from a horrendous episode on Saturday. he gets very agitated and starts flailing and hittting himself. he gets a very high fever and shivers uncontrollably and bowel incontinence. i worked with palliative care on the phone until i needed to call an ambulance. after injecting him with a large dose of haldol they got him under control. they did a ct scan on his head and then an ultrasound on his abdomen. no mets to his brain but the ab scan confirms liver and bowel mets which explains the toxins being dumped into the bloodstream. they are sending him home tomorrow on haldol 4x a day along with his paid meds. they have not indicated how much time is he has or what to expect next. has anyone had this type of experience?
He still has a lot of strength. We went to a Blue Jays game on Saturday and he managed well. He could not understand the scoreboard which is alarming because he eats, sleeps and breathes baseball. He is getting alot of small red dots on his abdomen now and his ascites seems to come and go. So all in all, he is still very stable. Lainy, he doesn't see his oncologist anymore, just palliative care.
My husband is quite stable still but has developed difficulty swallowing. Not all the time but sometimes....has anyone else experienced this?
Thanks Lainy. His oncologist, surgeon and palliative care doctor all believe this is the case. They believe the cancer has mets to his bowels and stomach. His newest sympton is sulphur smelling burps that could clear a room.....is that the cancer? I forgot to mention that he was hospitalized for 2 weeks in April with sepsis...the symptoms for that came on in only a couple of hours. Lainy please send me the list. Any information i can get will help me.
but sometimes I think he is getting better. I am so confused. George was diagnosed with cc in December 2010. He had a resection in February 2011 followed by agreesive chemo and radiation until November 2011. He never fully recovered from the operation or treatments and always felt unwell. In his scan of Jan 2012 they thought the cancer may have returned but then said no. In January 2013 they see "haziness" but think its fine again. He was referred to Palliative Care for pain management that months as well. In February he woke up on a sunday morning extremely agitated and threatened to rip down the walls and smash out the windows. I called Palliative who sent in a prescription to calm him down. He took it and went to bed, he then started towards a coma. The palliative care told me that this is the end and gave me the DNR stuff for him. Another nurse came and said i should get him to the hospital as he could have suffered a stroke or a seizure....so i called an ambulance. He as there for about 8 hours and determined he was in liver failure and gave him some narcan and lactulose and he has been good ever since. We went to see his oncologist as they believe he has a recurring cancer hence the feeling of unwellness but do not believe chemo will help and gave him a few months to live. That was in April and while he does have a hospital bed in the living room and cannot work, he is pretty good. He took a weeks trip to Nova Scotia (from Toronto) to see relatives and putters around the house. They still believe he is living on borrowed time but i look at him and he is LIVING! He has no appetite, takes huge amounts of lactulose everyday with over 30mg of Morphine everyday for pain. I know his symptoms are just well managed and it wont last. If he even misses a dose of lactulose he starts slurring his speech and he gets confused really easily. His ascites comes and goes, I get alarmed then it dissappears. I don't really know what his happening or what i should expect. Has anyone else dealt with anyone like this? I have been reading these forums since the beginning and this is my first time posting my situation....Thanks!
Posts found: 6