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Emma,
Welcome to the CC foundation boards where you will find a very nice bunch of people. None of us want a reason to be here, but thank goodness for these boards.Your mom as a patient and you as a caregiver, deserve to have more information from your doctors than just, “Google it on the interenet.” At the very least, that is lazy on their part and certainly not giving your mom the full information about her condition.
I strongly suggest getting another opinion, if possible, about your mom from a doctor who isn’t just blowing her off. There may be treatments available for your mom which will prolong her life considerably, but you need to first know the extent of her condition and then find out what is available. It doesn’t sound like your current doctor is willing to spend any time to explain any of this.
The cough: Duke is right. The cough could be a sign of pneumonia, or it could be a sign that the CC has metasticized to the lungs. If it is the former, it needs to be found and treated and if the latter, the doctor should have told you and your mom the full extent of her illness. Your mom tiring faster when walking may be due to problems in her lungs. That needs to be addressed.
Eating: Again, Duke is spot on…..a good appetite is essential to your mom maintaining her strength and being able to deal with the CC.
Hopefully, Gavin will be along soon to help you maneuver through the health care system and give you some suggestions.
Julie T.
You’ve come to the best place to find out about CCA. There’s a wealth of knowledge and even more compassion here. We are all patients or care givers and we’ve seen it all. We are your extended family. Express any emotions you want – joy, fear, frustration, calmness. CCA is a roller coaster of emotions, for both the patient and the care giver. Again, we’ve experienced it all.
One thing I suggest is that you get a copy of the results of any blood work and have them explain the significance of each item – and take notes. This will help you trend results.
A good appetite is a good sign I think. I lost my appetite (lost 20 pounds) and that was what drove me to my doctor for further. I lost more but have since returned to my initial weight (plus a little more).
Not sure if a cough is a symptom. You need to make sure it doesn’t go to pneumonia which can weaken the body.
As for timelines, we say, “There’s no expiration date stamped on our heals.” You can read all sorts of timelines. It depends on whether she has intrahepatic, Klatskin’s tumors, or distal CCA. Many of the “timelines” are old and do not reflect current knowledge and treatments. There is so much happening with treatment options so quickly, what was good info last year may be out of date today.
Gavin will be answering soon – he lives in Dundee and has a great knowledge of CCA and how it is treated in the UK and the best places to go for treatment. Use the Search function to read his posts.
Duke
Hi, I’m wondering my mum was diagnosed with cholangiocarcinoma three weeks ago, I asked the nurse how long she has and she wouldn’t tell me all she said google this cancer online, I have done this and can’t find a pacific timeline, I think they only thought she had weeks left, but my mum is eatting good and still able to do things apart from really walk a distance as she tires easy now is that a good sign she is still eatting? She has also developed a cough and I’m wondering if this is a sign the cancer is getting a hold? I’m terrified and the medical team aren’t doing much to support either of us in this situation many thanks Emma.
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