Husband, 55 y.o. diagnosed with cholangiocarcinoma

Discussion Board Forums Introductions! Husband, 55 y.o. diagnosed with cholangiocarcinoma

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    Hi  everyone, call me Jules. I am new to this forum.


    In March this year my husband started to feel sick. We thought it was his diverticulitis again but ended up that the ultrasound found nothing in the intestines and found a tennis ball sized tumour on the left lobe of his liver. Back then all his blood tests were normal (or relatively normal), except by the levels of ferritine (it was above 3500) and Ca 19-9 (592).  Liver enzymes were just a little bit above the normal level, what surprised the doctor. No hepatitis of any kind, no cirrhosis, no auto imune disease, no hemochromatosis. My husband doesn’t drink or smoke.


    As the tumour was too big even if it was benign and as my husband was in a relatively good condition, the doctor decided to do the resection of the left lobe of his liver + gallbladder + 1 local lymphnode and do the biopsy of the tumour after the operation. The operation happened in the second half of April and the biopsy confirmed it was malignant and the lymph node had metastasis (pT2pN1).


    He went through 8 cycles of chemotherapy (Xeloda), that ended last week. His Ca 19-9 levels were 52 in May and 31 in June. Today he went through tomography scan (we don’t know the results yet) and the blood tests  from yesterday were all normal, except by Ca 19-9 (it should be lower than 37 and his level was 38.5).


    Apart from the cancer, he has benign cysts on liver.


    Now I don’t really know what to think about it. My husband has a good appearance at the moment. Xeloda doesn’t cause hair loss, so looking at him he really doesn’t look like he is fighting against a cancer, he isn’t pale or have jaundice at all, he even gained weight during his treatment. He is still having some side effects of the chemo. But I was expecting the Ca 19-9 would be a lot lower… especially because in June (2 months after the resection) it was lower than now. I know that 31 to 38.5 is not a big difference and it is only 1.5 above the limit but still… I read somewhere that benign liver cysts can raise the levels of Ca 19-9, so I really hope that’s the reason why it is not lower. But he said he now is feeling like the same he was in March…


    Anyone has /had a similar story and had a happy end? I love my husband like crazy, we are married for only 2.5years and we have a 1.5 years baby. I try to stay positive as much as I can, but it breaks my heart seeing him down sometimes or seeing our baby wanting to be more with his dad and can’t because my husband is feeling unwell…

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