My husband currently surviving cholangiocarcinoma

My husband, Neville, was diagnosed with this cancer in May.The specialist at the local hospital diagnosed it, said it was operable and curable and referred him to the liver unit in Birmingham.At the clinic there a week later he was told it was inoperable, palliative care only!! We paid £1000 for a private MRI scan, and a week later he was operated on (not as extensive as first thought).!! He had his op at the beggining of July,received 11 units of blood after haemorhaging, spent a week on a respirator after getting pneumonia, and came out of hospital looking like a Belsen case, a puff of wind would have blown him over. He cried when I tried to get him to eat - 1/2 a shortcake biscuit was all he could manage, but from that he went to liquidised food, then to teaplate sized meals, and now is back to normal. He still has to gain a little more weight, and his lungs seem to have been affected by the pneumonia, but the cancer op itself is looking good.Good margins around the tumour, and no lymph node involvement.

It is a great shock Michaela, and you think it will never end, but we are a good few months further on than you, and believe me it does get better. It does seem to bring home to you though, exactly what is important in life, and that's no bad thing.Will be thinking about you both, stay in touch.

Go to www.cholangiocarcinoma.org

You'll find a vast support group there.

My husband was diagnosed with cholangiocarcinoma. He had been loosing weight for about 3 months then I made him go to the doctors. at first they did not know what it was, he had extensive tests, then they said that he had cancer and it was untreatable. He went from being a 14 stone very healthy 42 year old person, never been ill, to looking like a 90 year old man weighing 8 stone in 5 months. We moved him to Queen Elizabeth in Birmingham and it was touch and go for a while. They asked if they could use him for trials as there was nothing else they could do for him. He agreed. He had very high doses of chemo (cisplatin), was very ill, many side effects but picked up brilliantly. we thought it was going to be all right. He was never the same as the side effects were quite bad but he was putting on weight and looking much better. for 18 months he went from strength to strength. Then he became ill again. We asked about another course of chemo but they were reluctent to give it because of the 12 people that were trialed, 4 had died and he only really helped 2, but they said yes. Again it was tough going but he managed it. he didnt pick up as well this time though, had numerous operations but to no avail. He died 4 years after bieng diagnosed aged 46 years old. This is not meant to be upsetting. The hospital were brilliant and the doctors amazing. If you can have experimental treatment please do as my husband said even if cant help you it may help someone some day. We have 2 children and one day they may get it but his treatment may have had some results that can help or it may have helped your families so just hang on in there and i hope it all goes well for you.

Hi Michaela.

My husband was diagnosed with intrahepatic cholangio carcinoma this July 2016. It took them a good month to find out he had this. It had metastasized to his lungs. The only sign something was wrong was that he was always tired.

We were told that surgery, radiation & immunotherapy was off the table & his only option was chemo. The put him on a combination of cisplatin & gembeticine .

During this time he developed a cough that became 24/7 & everything they gave him did not work. So after 5 treatments when they decided they should do a ct scan on his lungs to see what was going on. They found the cancer had spread in his lungs & some nodules had grown in size. After a liver scan they found the tumour had reduced in size.

So then it takes the 4 weeks with no chemo to figure everything out. We were told there was an opening for a clinical trial. But while waiting his oxygen level had become low & he had to have oxygen delivered at home. So now not only did they cancel his liver biopsy but he now could not participate in the trial. He will be starting chemo again but with a different combo of chemo.

This has been such a rollercoaster of emotions! My heart breaks for my husband. He has been through hell. Every time we see or talk to the doctor it is always bad news. We don't know how long he had this but he feels it was 9 months since he was diagnosed. We weren't given any time frame of months he has left.

There is no cure but they can stop or slow the cancer. I have done an exhaustive research & found a couple of things but they are down the road.

I would love to share with you in how you are doing. I find I have my meltdowns but I try & remain strong, positive but at times its hard and remind myself of what he is going through.

I pray for you & your husband. I can if your interested tell you what I've found in researching.

Take care

Lynn

Hi Michaela,

I am so sorry to hear how young your husband is and that this cruel disease has afflicted him. I hope the surgery was a success and that he is still strong. My 54 year old mom was recently diagnosed with the same form of cancer, but the oncologist has told us that there are no treatments for her. Over the past month she has endured a heart attack, multiple strokes, gallbladder removal, and another stroke that took her ability to speak and move her right side. Tragically, stroke victims can't receive chemotherapy and the cancer has already spread to her lungs, pancreas and possibly is on her right heart valve. She has basically been left for dead by her doctors. But I have not given up hope, she continues to fight. She has not wavered on trying to fight to live, she hasn't been able to eat the whole month of march but she struggles and continues trying to get her mobility in her right side back and trying to speak. She, like your husband, is a fighter and will not give up fighting so I will not stop believing in her. If you could please pray for her, her name is Carmen Salgado.

Thank you

Hi Michaela,

One of my family member is suffering with same cholangiocarcinoma with advanced stage. kindly please let us know if any better treatment is in progress currently.

Thanks i advance

Surender

Such sad stories.  I feel for you all.  Any type of cancer is hard to cope with and please all make sure that you all get the help and counselling that you deserve too.  Stay strong all of you and good luck