December 14, 2006 at 6:57 pm #14205ukmemberMember
It seems to me that everyone’s symptoms are different and there is no ‘usual’ way. My husband’s decline at the end was quite quick and painless. Since he didn’t have any chemotherapy he didn’t have any of the side effects. Ascities – they treated by drainage, rigors (severe trembling) – I just piled many covers on him until the trembling stopped, fatigue – I don’t think there is anything that can be done about that.
One week before he died my husband was still having business meetings.
Thursday before he died we went to see an alternative doctor. He was able to walk short distance only to her surgery. When he came home he was feeling more positive and he asked for a fried egg and beans, to try and build up his weight. (At this time he was skin and bone.) This was the last time he ate anything of substance. He climbed up the stairs to bed. At this point he was weak but alert and mobile.
The next day (Friday) he started to decline. He wasn’t able to eat or drink anything but he was awake able to converse and had a visitor. I guess I must have realised that things were nearing the end because on Sat I asked the children to come home and stay.
Saturday Sunday and Monday he ate nothing and was only able to sip a little liquid but he was able to talk, On Monday he had four visitors and was quite lively. His ascities had been getting worse and he was feeling uncomfortable. He hadn’t eaten anything since Friday and I was really worried. On Monday night he started to pass stools like tar, which I now know to be a sign of internal bleeding high in the GI system. Either a result of the tumour growing into the vein or maybe the single (low dose) steroids he took to stimulate his appetite, caused bleeding from a stomach ulcer, no-one will ever know.
On Tuesday morning he asked me to arrange for his ascites to be drained but because he wasn’t prepared to go to hospital I tried to arrange it at home. One minute he was talking to me and a minute later he died.. What I think – and don’t know – is that this internal bleeding in his already very weakened state, caused organ failure.
I don’t know what to say to you. if the chemo helps alleviate symptoms then clearly it is of value, otherwise …. Trips to the hospital must be exhausting in themselves not to mention that effects of the chemo. If I were in your shoes I would want to find someone who understood about caring for the dying and try make her last weeks as comfortable as possible.
I hope this has been a little help and my thoughts are with you and your mother.December 14, 2006 at 5:41 am #14204
UK member – I don’t know if I’m replying to you or to the board in general, but I wanted you to know I read some of your posts and your ‘in remembrance’ and I was very touched. Your husband was so lucky to have your love and the love of his family and to know that until the very end. I see that you say you might have wanted, in hindsight, to try Gemcitabine, as it seems to be tolerated well – so it may make you feel a bit better to know that my mother didn’t tolerate it well at all, though it did seem to alleviate some symptoms for a while. I don’t know if the side effects of the chemo are worth it for her, though. She only had one round of chemo and they can’t give her another one yet because her bilirubin levels shot up and now we have to go for an ultrasound to see if there’s blockage or something else going on. Dragging her to doctor after doctor is just too fatiguing and depressing, and I see why someone would decide to forego all the treatments and have as good a death as they can.
My question is: were your husbands’ symptoms very bad the few months before he passed? I don’t want to be my mother’s executioner by urging her to continue with chemo, but her symptoms without chemo are pretty bad, and I don’t know of any other way to alleviate her discomfort. Is there anything you can recommend for nausea, bloating, fevers, fatigue? We’re trying to get her to eat a healthy diet to boost her immune system since she’s anemic, but what else is there to do?
Thank you for sharing your story and letting all of us know that we’re not alone in this.
– JoyceDecember 12, 2006 at 9:50 am #14203ukmemberMember
My husband had ascites for the last five or six weeks of his life. They drained 7 litres and then a couple of weeks later 5 and on the day he died we were preparing to drain again. The fluid build-up became quicker. I think one indicator of ascities is the hardness of the swelling. My husband’s stomach was stretched like a drum prior to the drainage.
Draining is not without risk, as the loss of so much fluid is a shock to the system and may cause blood pressure to fall to a dangerous level. Also I believe there is a loss of proteins and minerals which the body finds hard to adjust to.
I agree with your decision to make her quality of life the best it can be at this stage.
My husband was regularly visited by an nurse from India whom he met in the hospital. She was experienced in nursing cancer patients but also had a different and more indian approach to terminal illness. In addition to nursing care she would sit with patients listening to them when she could, soothing them and making them as comfortable as possible. In UK hospitals this is not usually a part of hospital care. Too much emphasis is placed on doing things to patients and not enough on being with them. She stressed the importance of family being around and expressing their love for the person who is dying; this she sees as a validation of the life they lived and a great comfort to a person who knows their life is at an end.
I don’t think that you are a ‘downer’ for all those who are fighting. They are at a different stage and make different choices. At some point my husband made a choice not to go into a hospital again, because his experiences were all so negative. I don’t think the outcome would have been different had he gone back into hospital. I think it would have just prolonged the process, increased his discomfort and sense of isolation. You can read about his end in the In Rememberance section – A good death.
I hope your mother enjoys your love and care and the presence of her family and the joy of her granddaughter and her final days are filled with love and compassion and an easeful death.December 12, 2006 at 6:58 am #14202
Thank you both for your thoughtful replies – my mother hasn’t had any draining and they DID say her liver was just swollen, but I wonder how much more it can swell at this point. They (the docs) didn’t mention ascites so I’ll assume she doesn’t have them – yet. Her PET/CAT scan was pretty recent, so hopefully they would know. But they haven’t even told me if she has intrahepatic or extrahepatic yet – her doctor, who is a real bigwig and expert, is on vacation for two weeks – isn’t that nice? so we can’t get very specific answers until his return. All my research seems to indicate that jaundice isn’t that common in intrahepatic tumors, so that would help answer some of my questions.
Yes, Moneypenny is my real name ! – and it’s of British/Scottish origin – though I’ve been to Great Britain many times and they get as many laughs out of my name as Americans do. I’ve heard all the James Bond jokes, but feel free to come up with some of your own – I don’t mind! I never understand people who are sensitive about their names – I’m so proud of mine and I gladly put up with the same James Bond references over and over, through the years!
Thanks for the support in these forums – though I hate to say it, we’re actually hoping the end is near, as my mother has so many complicating autoimmune problems and has had constant hives and itching for years and I’m just afraid to see her go through more of that – her body overreacts to all medicines and treatments and she’s not taking the chemo well and her quality of life is already pretty bad – a few hours a day feeling decent, that’s all. But without chemo she was in very bad shape, too – though she’s still living on her own and able to function. I know everyone hopes for a cure and continues fighting bravely, and I applaud all of you, and many of you will win the fight– but I just know my mother isn’t going to fight this, not now, not after going through autoimmune hepatitis, then breast cancer, then losing my stepfather to cancer. Her case seems to be unique, even for this rare disease. So I’m just looking at ways to improve her QUALITY of life so she can smile at my daughter and laugh with us for a while again. I don’t want to be a downer to all the fighters out there and survivors who have beat this terrible thing – or at least kept it at bay. I hope for the best for all of you.December 11, 2006 at 7:44 pm #14201saraMember
I am glad you found this board, although I will echo Peter’s statement that I’m sorry that you had to find the board.
My friend didn’t have any stents placed in the ducts to help open them up. I don’t know if it’s because she had intrahepatic bile duct cancer or not. But I did notice that she started to appear a bit jaundiced towards the end. (in the last 3 months)
For the following information, please keep in mind that I have ZERO medical training. This is just what I picked up along the way during my friend’s fight. There’s probably some truths intermixed with some erroneous information. I imagine the best policy is to remain silent, but I remember the helplessness feeling of just wondering “when.” so, I ‘ll take my best stab: Is she retaining fluid in her abdomen? If so, then she has ascites. I cannot tell for certain, but your original post seems to imply that the doctors said she does not have ascites. Obviously they should know better than anyone on this board. However, if the doctors just haven’t said that word yet, there are some signs you can look for. If they prescribe a diuretic, or they are draining fluid from the abdomen, she likely has ascites. If the diuretics work on relieving the swelling, then she’s not as far along. (relatively speaking…maybe several months) However, if the doctors have started draining the fluid regularly, you’re probably looking at weeks. If the swelling is not fluid induced, then I imagine the swelling is coming from the swollen liver, which will grow to compensate for the reduced operating capacity. And I’d guess that you’d be looking at many months in this scenario.
Your mom, you, and your entire family is in my thoughts and prayers.December 11, 2006 at 6:37 pm #14200peterMember
What a great logname! Are you British?
I have to assume that with no jaundice that none of the tumors are blocking the flow of bile. The jaundice many of us have is because the bile is restricted as a secondary symptom of the cancer.
The bloating sounds like it could be ascites and even a simple ultrasound can determine this. You may want to ask for one although the Doctors must have done some kind of scan (CAT or MRI) to give you the information you now have. If the scan covered the abdomen at all they can tell you if Ascities was present.
I’m sorry you have had to find your way to this board but there is a lot of god information here. Best wishes to you Mom and your entire family.December 10, 2006 at 5:34 am #133
My mother was diagnosed last month (nov 2006), has stage IV bile duct cancer, all of her liver is involved, innumerable tumors, metastasis to lungs also. No symptoms except fatigue and tenderness of liver until about a week ago – now constantly fighting fevers, chills, nausea – horrible. We started chemo this week (Gemzar, Xeloda), just to alleviate symptoms, hoping for some respite, hoping the chemo doesn’t make her quality of life worse. Not really hoping for a cure, though I know others would, but she has autoimmune hepatitis and various autoimmune issues that most doctors don’t even understand and I don’t believe it would help her to drag her to more doctors, tests, procedures. She’s only 64, wants so badly to see my 4-yr old daughter (her only grandchild) grow up, but we’re realists, and she’s too fatigued and nauseous to do much. We have the best care from NYU and Sloan Kettering here in NY.
After researching for weeks, I can’t find any cases where jaundice/blockage isn’t an issue. Her doc just said it won’t be an issue, no need for stents, but doesn’t adequately explain why. Is it because it’s too advanced? I thought blockage and jaundice were usually some of the first symptoms, or at least would show up by stage IV. Anyone else have a similar experience? I want to know what to expect next, and I know each individual has different experiences depending on the location and spread of cancer, but I hate the feeling of helplessness. Should I be looking for signs of liver failure? She’s so swollen and bloated but they didn’t say she had ascites – how do I know if she has ascites or just regular swelling from her liver? Also has good appetite when she’s not nauseous. Sorry for all these questions but I just can’t get enough information and I’m so frustrated. Acunpuncture worked wonders for nausea – for about 8 hours only, though!
Please let me know if anyone has similar symptoms – it seems the cancer has completely invaded her liver but her ducts are still working somehow and I don’t know why her bilirubin is fine and jaundice hasn’t set in.
Thanks for this website – it’s the only helpful thing I’ve found.
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