Advanced Cholangiocarcinoma; no treatment.
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It’s good to joke Christian, we need to laugh still. Hubby only takes one dex tablet daily, he’s very slight so there has not been any weight gain, but it does help with appetite, and maintaining what weight he has. Although not a hearty appetite, but better than he had and a spark of energy now and again, which has been beneficial. Oh boy, fever! Glad your mum is in hospital and I hope that everything goes well, could have been the underlying infection that made her feel so awful and like giving up. Her case so much like my husband’s, once on antibiotic drip and clearing blocked stents he bounced back and is on permanent antibiotic tabs which have worked really well. Wishing you all the best hope your mum bounces back soon.
Take care, regards Mandy.Thank you all for the replies!
I’m sorry to hear your husband is battling this terrible disease, Blodynbach. It sounds like we are at similar points in this journey. Mum is no longer seeing her oncologist, and is now receiving care from a palliative care team. She has not been any pain, so far, thankfully. I did mention the Dexamethasone to her, but she is not willing to try it. I was on both Prednisone and Dexamethasone earlier this year (sinus and tonsil issues, all better), so she is familiar with the weight gain properties. To say I turned into Elsie the cow is an understatement (almost 50 lbs in a couple of months! yikes!) Sorry, had to joke a little.
Thank you Lainy for the suggestions with the supplement drinks. We have tried that with the fruit to no avail. She is basically limited now to canned soups, and seems to do well with anything with vinegar (salads, bruschetta without bread, etc.). This is so not her, this woman could eat like nobody’s business before.
I’m sorry to say, but I do have some news tonight. This morning, mum seemed to be a bit better from the past 48 hours when she was doing poorly. She actually drank a shake by herself overnight! To say I was elated, was an understatement. Unfortunately, it was short lived. I left the house for a few hours while some family visited her this afternoon, and when I came home, she was feeling warm, so I took her temperature. It was almost 40°C. I was instructed to get her to hospital immediately if her temperature was over 38, so I took her in. She was not pleased with me, and said I was overreacting. By the time we got to the hospital, her temperature had come down and I felt like a proper idiot. About an hour later in hospital, she began to get extremely hot, to the point where sweat was running down her body. They took multiple blood samples, a urine sample, did an ECG. She is also hooked up to a saline IV. She’s been admitted, for which I am grateful. Her hand felt swollen and clammy when I was holding it as I said goodnight, and left her to rest. She said to me, as I went to leave, “you did the right thing bringing me in,” which was wonderful. It’s always a fine line between being paranoid and doing the right thing. I just hope this isn’t a serious infection, or related to her stent or bile duct catheter.
One last thing – a friend of mum’s, who didn’t know mum has been ill called today. Mum has put off calling this friend because her birthday is coming up, and she didn’t want to ruin it. Her friend is now battling breast Cancer, and in chemo. I feel horrible for her, and wish her a successful recovery, but I am glad that mum will now have a friend who she can talk to and will understand, as I have found this community here.
Thank you all so much for being here.
– Christian
Dear Christian, I must say you have dealt with a lot but I am sure your Mum is so grateful to have you caring for her. First on the nutrient drinks, have you tried adding fruit and blending it. My husband didn’t like them either until I tried Carnation Instant Breakfast in vanilla and blended in a banana. He loved that.
We all felt helpless in the beginning but it doesn’t take long, unfortunately, when you will feel like you graduated from CC101. It sounds to me like you are doing great and have it all under control but you never mentioned any pain. Is she not in pain? If so that is great but should she start getting uncomfortable call the ONC right away as it is important to keep her comfortable.
Please do keep us updated and like I said in the 1st post, you are NOT alone as we are all right with you!Dear Christian,
Thank you so much for sharing the details of what is going on with your mom . I am so sorry for what you have all had to deal with the past few years and now this. I do totally understand as I lost my husband to this disease and have lost several other close friends and relatives since and although we do begin to handle things differently than others who have not been through any great loss in their lives, it still is not easy.
Stick with us, we are all here for you and truly understand what you are dealing with and going through. Let us know how mom is doing and how things are going. We truly do care.
Love & Hugs,
DarlaDearest Christian
My heart goes out to you and your mum. My husband (age 57) was diagnosed in April and unable to have a resection due to mets in the peritoneum. He had stents inserted but chemo was interrupted due to infection, then resumed. With chemo the tumour doubled in size, such a blow. Then stents blocked and he became severely jaundiced, the stents were cleared and he improved. Tried another chemo but no luck and he also had 12 rounds of radiotherapy to try and shrink tumour. He could have tried one more chemo but decided against it as it is a ruthless one and he wasn’t strong enough to take it. Stents are working well but mets spreading and causing ascites (fluid build up) in the abdomen which is being tapped every week. Appetite is also an issue and weight loss significant. He has been prescribed dexmethasone (steroid), this helps with appetite and energy so I recommend your mum try this drug if at all possible. We were given 3-6 months late July, nothing can prepare you for such a heartbreaking prognosis. We have palliative (hospice) care nurse visiting once a week at present and they are fantastic. Pain management is crucial and they monitor this. it’s such a hideous disease and I can totally relate to your feeling of powerlessness and helplessness. I hope that your mum can find comfort and relief, you are doing a fantastic job, being there to love, support and care for her.I ordered a book online, called “Lean on Me – Cancer Through a Carer’s Eyes” by Lorraine Kember, a lady from Western Australia who cared for her husband with terminal cancer. It’s a wonderful book. I think you can download an e-version of the book.
http://www.cancerthroughacarerseyes.jkwh.comSending you and your mum love, strength and courage Christian.
Kind regards
MandyThank you for the warm welcome over in the “introductions” section. I’m so glad to have found a community of other people who are going through the same thing.
It all started with a rash, for my mum. She had been referred to a dermatologist (if you can call this incompetent person that), for a rash that was driving her crazy with this chronic and spreading itch. This “dermatologist” spent all of 2 minutes with mum, and sent her away with a steroid cream for dermatitis. 3 months later, this rash had not cleared up, and at the same time, mum started to not be able to eat or drink some of her favourite things. Coffee and Ice cream were the first to go, followed by various carbohydrates especially bread, and then proteins started to go. She would gag and be nauseated at just the thought of them. She always loved these things! I advised her to contact the dermatologist again, which she did. The doctor refused to see her, saying she needed another referral! I started doing some research online, and none of the pictures of dermatitis looked like what she had. I looked at all the different rashes I could find, until I found one that looked like hers, called a “liver rash”. Mum decided to go have a full physical after I told her what I found, and the doctor also issued another referral to the dermatologist.
The doctor called her in and told her some of her liver metrics were high on her blood work, and he wanted a CT scan. By this time, she was jaundice. This scan confirmed there was a “spot” on her liver. She was referred to an oncologist team, and also had a biopsy scheduled. It was originally supposed to be a month later, but they moved it up to a week. After she came home from the biopsy, things got horrific. Over the following 4 days, she consumed maybe 800 calories and not even a litre of water. I called 911 and she was taken to hospital. She could barely stand. On September 19, she and I had been on a several kilometre hike, and on October 19, she couldn’t walk. This was frightening. She first saw the dermatologist on May 20. This all happened so fast!
While in hospital, it was confirmed she had advanced Cholangiocarcinoma, which is what I was afraid of. I had really hoped it was something else – anything else. Also, due to dehydration, her kidneys were failing. The inserted a stent into her liver, and an external drainage catheter. She was sent home 2 weeks later, and in better shape. No rash, improving colour. Still walking with a walker, but at least walking. It’s been almost a month since she got home, and I would say she is averaging 800-1000 calories per day, which is a challenge to get into her. There are only about 20 foods she will eat, and her portions are toddler size. She is down 50 lbs since July. Supplement shakes are making up the majority of her calories, but are a constant battle with us, as she hates them with a passion – all brands, all flavours. Her external bile catheter is still hooked up to her, but not operational. It’s draining internally for now, but it’s there as a backup.
The past 48 hours, she has started to not do well. She is drinking water like crazy, but only eating maybe 500 calories per day, and sleeping most of the time. Her tumour was over 10cm in size, and non-resectable. Chemo, the oncologist indicated, is not a wise choice as in her case, it would likely do more harm than good. The oncologist also said she would give mum chemo, if she decided that was what she wanted to do. It isn’t, so mum is not pursuing any treatment. Her timeline was 6 months from Oct 21. I have moved home, and am here with her 24/7 providing her care. We also get a nurse 2x per week, and PSW support 3x per week to help with hygiene etc.
This is all so sudden, I feel ill prepared. I know I am giving her the best care I can, and so are the professionals. I’m glad to have a place to come and discuss things, and share. Friends and family are great, but they have no idea what mum is going through (she puts on a great performance for visitors), or what I am going through as her caregiver. The grief part I can handle, I lost my fiancé and my grandmother on the same day in December of 2012, so on that front, I am hardened. But watching her fade and knowing all the effort she is putting into fighting, and I am putting into care, won’t affect the outcome, has me feeling so powerless.
Thank you so much to everyone who has posted their experiences on here. I find reading your journeys a constant source of comfort, and the knowledge useful beyond words in helping her, and myself as we now are on this journey, too. I will keep this thread updated as we travel this difficult road.
– Christian
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