Daisy’s story
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Hi Daisy, A fellow Aussie!
Sorry I wish I could perform miracles and make your mum and my husband well again. Just know that I can relate to what you are going through. Cancer had reared it’s ugly head in my family, but I’d never heard of it occurring in the bile ducts, until my husband was diagnosed at the end of Jan this year.
You just have to try and soldier on day by day as best you can. I am glad that your mum will be admitted to a nearby hospital. While she feels strong enough, she will enjoy the normality of having friends and family around. Having people around will also allow her to focus on other things besides her condition.
Thinking of you both and hoping everything goes as well as it possibly can for your mum.
Regards
Lynn From DownunderDaisy…..thanks for reporting back. Good to hear that vomiting, nausea and pain are under control. Opioids are very effective for treating and managing pain, but their use frequently results in opioid-induced constipation. Rather than taking in 3 big meals a day, it has been suggested to spread the food intake throughout the day. Small meals, 6 times per day. Once your Mom gets stronger, she may need to walk a bit, not big walks, but small enough movements to stimulate her digestive tract. In more complicated cases, it has been advised to eat while standing up. Our JeffG used to take a stool softener (up to three per day) and then reduce to two per day and he faired rather well. but everyone responds differently. In any case, dear Daisy, I know that it will be worked out.
Although, 3 to 6 months may be a good time frame, please remember that many people outlive these predictions. Excellent symptom control will allow for good quality of life and knowing your, Daisy, you will make sure for this to happen.
You are in my thoughts.
Hugs,
MarionAfter another meeting, it was decided absolutely that there would be no chemo. It won’t give either quality or quantity so what’s the point of putting her through it. They won’t release her home either so I have negotiated with them to send to her our local community hospital (her house is around the corner) which will give her peace and quality of life. They have a small palliative care unit and she will have loads of her friends and neighbours popping in to visit and make her life happy as it can be under the circumstances. I first heard of cholangiocarcinoma a couple of weeks ago and there’s no hope. How can your world fall apart in two weeks?
Hello Marion,
The hospital she is in has an oncology ward and treatment centre. She is cared for by an oncology team. They have given her 3-6 months and no chemo as it would decrease her quality of life and not increase her quantity. Unfortunately it has metastisised to her liver, possibly pancreas and they are looking to see if it’s gone to her lungs and brain.
So far she has had two biopsies, 2 ct scans, 1 xray and will have a brain scan today to see if there is a spot on the brain causing the nausea. They cannot find a blockage on any of the scans. She is so much better since being in hospital – they have stopped her nausea and vomiting which has enabled her eat full meals, her pain is being managed better and although her constipation is still a struggle to treat, she has had a couple of tiny BMs. They are going to wait a couple of days to see if her big meals she’s keeping down, get processed and she has a bigger BM. She’s been taking all sorts of laxatives and hopefully they start working soon.
I just want her to have quality of life from here on end. I knew, after reading up on this evil disease, that her time would be short. Her symptoms appear to be end stage and not early stage as I first hoped.Daisy…..the vomiting may be related to a biliary obstruction. What type of tests are they taking? I am concerned that the local hospital has little or no experience with this cancer.
Hugs,
MarionMum was admitted to the oncology ward at our hospital last night. At this stage they are looking for symptom relief so they can start chemo. Her feet are terribly swollen and they are not sure of the cause of her nausea. It could be pain meds or it could be that she has a spot on her brain. She will be having more tests this morning. She doesn’t have jaundice which is a good thing but I am concerned about her lack of bowel movement. She has multiple hard lumps in her tummy that we can feel but the doctor thinks it may be pieces of poo floating around. I wasn’t sure what to make of this as I thought the bowel was in one are and I can feel these lumps from one side of her stomach to the other.
Can someone please tell me what the stages of this disease are? Is there a timeline for symptoms?Daisy,
I don’t have medical advice to offer, but wanted to welcome you to our group. I hope when you get your mother to the hospital (or maybe the cancer center Marion recommended), you can find out further information. One thing with this disease, is the need to try and understand as much as we can. However, it’s very understandable that when you first hear cholangiocarcinoma, most people (and many doctors) do not know much about it.
If you have time, I’d suggest going to our homepage and reading what you can under the newly diagnosed section. It might help you with knowing what questions you want to ask.
http://cholangiocarcinoma.org/newly-dx/
Let us know how you make out.
best wishes,
CatherineI am about to take her to hospital for a direct admittance, just waiting for the phone call to say the bed is ready. Took her to the oncologist today, confirmed diagnosis of cholangiocarcinoma but I don’t have any further information. Was too scared to ask in front of mum who doesn’t handle things well. I have no idea what stage, what her expected outcome is or anything else other than it’s not operable. Feeling sick to my stomach. Would like to know what to expect from here.
Daisy…..considering your Mom’s current condition (vomiting, no bowel movement and swelling in abdomen and lower extremities) it would be best to take her to a cancer center. Is it possible for you to take her to the Emergency of the Peter MacCullum Cancer Center?
http://www.petermac.org/
Please keep us posted, we care.Hugs,
MarionHello everyone,
My mum has been unwell for a couple of months. Started off with pain in the midsection and heartburn. She was put on nexium and sent for a gastroscopy which showed a little gastritis but nothing worrying. She then started bringing up bile every morning so her GP sent her for a scan which showed lesions on the liver. He sent her to an oncologist for further investigation and mum had blood tests and a liver biopsy. When we went for a follow up visit the oncologist said “well Beverley, I’m here to tell you that you don’t have cancer”. Relief and joy. Once this feeling settled I asked why all the symptoms and what exactly was the lesion on her liver. We were told to wait a few months and then go for another scan to see if the lesions had spread. This didn’t sit right with me so I pushed for more immediate investigation. We were sent to an upper GI surgeon who booked mum in for another biopsy hinting that the first one was not done well. We have just received the results of the biopsy and I’m sure they have been sent to us in error, they should have gone to her oncologist. Anyway, the report states that mum does have cancer. Can you imagine how awful it is to be told “you have cancer, very happy to tell you you don’t have cancer, you have cancer”?
Anyway, the report states the following:The pattern of immunostains is somewhat equivocal. However, given the positive staining for the CK19 and negative staining for the Hepar-1 and in the absence of canalicular pattern staining for p-CEA and CD10, a diagnosis of adenocarcinoma of pancreatobiliary origin (including cholangiocarcinoma) is favoured over hepatocellular carcinoma.
Can anyone tell me exactly what that means? My understanding is that it is Pancreatic and bile duct cancer that has metastisised to the liver. We were told that it’s inoperable.
Mum is getting sicker by the day. She vomits anything she eats, has not had a bowel movement for a couple of weeks despite every medication being taken to relieve this. She is losing weight fast apart from her lower belly and her feet and ankles are hugely swollen.I can’t seem to get a diagnosis, only continual investigations. We seem to get passed from doctor to doctor. The upper GI surgeon wanted us to go back to our oncologist without telling us too much. Our GP just wanted to give mum pain meds and constipation meds along with the wafer they give for chemo patients. He has sent us back to the oncologist too without an actual diagnosis. We see the oncologist today but she told us at our first visit that she only treats women’s cancers so if mum did have liver cancer she would be sent on to someone else.
Meanwhile, mum is getting sicker and sicker and is yet to have access to chemo or radiation. I feel helpless, scared and frustrated.
Mum will be 79 in July, we are from Melbourne, Australia.
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