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Just thought I’d let you know my Dad got great news today.
You may recall my Dad was diagnosed with stage iv bile duct cancer at Easter, with mets to the lungs. He completed his fourth session of gem/ cisplatin regime chemo today. His Consultant visited him on the chemo ward to say that his bloods show that the tumour in the bile duct has reduced significantly ( 60%). While he cannot comment on his lungs, the hope is Dad is responding very well as he has no respiratory issues at the moment. It’s the best piece of news he has got in weeks and he is over the moon. So far no nasty side effects either ( save a rash on his face).
He is a warrior and I hope this post gives other warriors hope .
I’m delighted for you. Enjoy the chemo holiday .
Thank you again for taking the time to email me. I really do appreciate it. I am going to share your email with my Mum and Dad as I know they will benefit from your advice.
By way of update, Dad met his oncologist Mr. Bird on Tuesday. It is the first time in 5 weeks that I have seen the twinkle back in my Dad’s eyes. They felt very reassured by him, and for the first time since this awful prognosis Dad felt that he was being given a fighting chance. The Oncologist spent a great deal of time with my parents explaining the treatment. Dad has stage 4 CC, and it has spread to the lungs. He will be starting the chemotherapy ( the gem/cis regime) next Monday. He has to get a hearing test, flu vaccine, and his teeth checked before then. Even though he is going for Chemo, he is so positive about it and wants to get started ASAP. He is not going to take this disease lying down!
He discussed immunotherapy with Mr. Bird but at the moment, it may not realise any better results. He would need to get a sample of the cancer cells from the lungs or bile duct, which may be difficult to get and these must be sent to Manchester. While this is being done, his Chemo would be delayed. But if the Chemo goes well , and he gets to a stable stage, then it would certainly be worth looking into.
Thank you again for your insight and advice.
My Dad had a metal stent procedure done today ( they had to replace the plastic one before chemo). He was hoping to see Oncologist this week but he is pretty wiped after the procedure, he was in a bit of pain afterwards. Hopefully that will improve tomorrow . He is so anxious to start treatment as his lungs now have mets and I know he is terrified of it spreading further.
You are right to take time off, I’m going to see if my hours could be reduced to help my Mum and dad. There are five adult chikdren in our house so plenty of help.
I really hope your dad gets some relief from his jaundice symptoms soon. When dad got the plastic stent in , he got immediate relief . Bloods are now at 46 bilirubin so hopefully next week he could be ready for chemo. We had to ask the nurse on a number of times today for the blood results so we could get them over to the oncologist. Our family have never been unwell but it appears that you have to be proactive and dare I say , pushy, to get matters progressed.
I’ll keep you posted . Best of luck – keep in touch . X
Sorry to hear about your Dad, my Dad was diagnosed with bile duct cancer 4 weeks ago.
My Dad has no appointment for oncologist yet either. My understanding is that they need to get the jaundice under control before chemo can start. They should check bloods regularly. There is some good information about stents in the treatment section of this website.
I am in Ireland but the team had to discuss my dads case in a multi disciplinary meeting. That meeting was last week. I would get a second opinion if you have concerns . I hope your dad gets relief from his jaundice treatment soon.
Best of luck.
Thank you for taking the time to reply to my email. I hope you have a lovely holiday in Brittany.
Dad is meeting the oncologist the week after next and his jaundice has fully cleared. I would love to receive more advice on attitude and tips re chemo . I’m trying to keep positive at the moment and would love nothing more than to be able to keep Dads spirits up. I am happy to share my email if this could be done. If not, I will follow your posts on this forum.
Thanks again and enjoy France .
Thanks for your message Julie
Your posts have given me such hope.
My father was diagnosed with suspected CC on Good Friday. He presented with the same symptoms that most people describe ( jaundice, tiredness, flu like symptoms, yellow eyes). The MRI showed the blockage in the bile duct. He was discharged on Easter Sunday with limited information and we were all so shell shocked and devastated. The prognosis was poor, we were and still are terrified. My sister is a GP so unlike your story, we got to see a specialist in the area the following Tuesday. He provided some hope that the tumour could be removed by surgery due to it’s location. My father had a plastic stent fitted, and then they did some further routine scans. Unfortunately, the consultant advised that my father had secondary mets to the Lungs and surgery would no longer be an option. The consultant that we had put our faith and hope in was no longer going to be of use to us. He was fantastic delivering the news. He advised that the cancer was incurable and advanced. He did not give us an indication of how much time our father would have, he said Dad was not a statistic and each case was unique. he said it would be a case of quality over quantity. Given my Dad’s age ( 60) and his general good health, he said they would “throw the book of chemotherapy ” at him.
I can’t imagine the lonely night he spent in hospital the night before after being delivered that news. I cried myself to sleep, not for myself, but for him and how scared he was. He is the strongest and most positive man I know- I have never seen him so terrified. He was discharged the last Thursday and was told that once the jaundice had cleared, he could start chemotherapy. They also advised they would replace the plastic stent with a metal stent as this would be more resilient ( in circumstances where surgery is no longer an option). We were given no appointment date of when he will meet the Oncologist. It appears that no matter what connections you have to the medical field, everyone becomes part of a system and patience is required. I believe there is a mdm tomorrow where my dad’s case will be discussed. I worry that the time that is being lost since Good Friday may cause the cancer to spread further. I take solace reading your posts that your tumour did not grow in the time you were waiting to start chemo.
I should say that the day after my father was discharged he went to see a GP. His GP had retired, and my sister cannot act as his GP. The GP he met did more damage and hurt than any of the bad news delivered before. He told my Dad with conviction that he had 3/4 weeks to live and he should go home and spend the time with his family and get his affairs in order. He also spoke about the chemotherapy being so awful he will not be able to think or make memories he will be so unwell. He spoke about end of life care. My father is a successful business man, the type that works 6 days of week and then farms on his spare time. He left the GP practice completely dejected and overwhelmed. I am sure he believed that my sister conspired with the consultant and us to shield him from the truth. I will never forgive that GP for what he did to my Dad. At the moment, the whole family feels paralysed, afraid to do anything or go anywhere. I feel my father would feel safer in a medical environment as he is worried about his mortality with no one giving him an indication of what time is left. I suppose no one can, can they? Each person is different. I take hope that you did not get any major adverse affects to chemotherapy. I feel in my gut that my Dad will respond well. He was eating a few hours after the stent, and has a really strong pain threshold.
So you can see from my post, my Dad is beginning his CC journey. I never participate in forums so I apologise if I am rambling..
I was hoping you could answer some of my questions:
1. Did you change your diet in anyway?
2. Are you satisfied with your treatment? We are in Ireland and I wonder would the treatment in the UK be more advanced? It would appear that the same chemotherapy for CC is given worldwide.
Thank you for sharing your story and advice in such detail. Your positivity is infectious and I really hope you keep well.