My dear daddy
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Hi Sam
My dad was in the same place. He was diagnosed and was told 6 months with and 1 year with chemo. Sadly he passed away this year…1 year after diagnosis.
Please feel free to ask me any questions.
Hi Sammie,
Thanks for the update on your dad and sorry to hear about the infection in his toe, grrrr to that. Glad to hear that you will speak with your dad about a second opinion and I hope that goes well. I k
now that the culture we have over here is not the same as it is in the US about getting further opinions on things but I do feel that it should be done. Sometimes we should all be more proactive I feel in the UK about stuff like that, especially when it comes to CC and the rarer diseases like Marion says.Please let us know how things go and how your dad feels about this. We are here for you.
Hugs to you too,
Gavin
Sammi…..Contrary to the believe that a second opinion is based on mistrust of the diagnoses, it is widely recognized that a rare or life-threatening condition demands a consult with an institution specializing in a particular condition. Not necessarily are these physicians smarter than others rather, they are comprised of a team of experts experienced with a larger volume of patients. In addition to, these major centers will have the latest in technology available for treatment.
Good luck today and please stay in touch.
Hugs,
MarionSammi, thanks for the update on your Dad. As if the CC is not enough the toe has to act up! Hope it starts healing. Mainly I just want to say once more how important that 2nd opinion can be. If it validates what you are doing now all the better to rest your mind that all is being done for Dad. They may also have different ideas for treatment. I never heard of a disease as like CC where even the Doctors recommend another opinion because it is so rare. Much goo luck to you and DAD.
Thanks so much to you all for taking the time to reply. Your comments and words of advice and support have lifted me when I needed it most.
I’m heading to Dads soon to go to his meeting for the results. I don’t know how he will feel about a second opinion but I’ll find out today as I think that would be good – I had no idea he could do this and through the NHS too.
Gavin – he’s been diagnosed and treated at Stoke Mandeville hospital. I’ve heard that the John Radcliffe in Oxford has a great cancer unit but at the time of diagnosis he didn’t want to transfer.
Back at diagnosis he had a blocked bile duct so they did an ERCP and inserted a metal stent – he contracted pancreatitis following this procedure, but eventually recovered.
More recently, he got an Infection on his big toe (of all places) and because his white blood cell count was so low they took him into hospital and pumped him full of antibiotics. They were really indecisive over whether to operate or not and in the end chose not to as they said the healing process could take up to 6 months and would affect future chemo treatment.
That’s the latest and I’ll let you know how we get on today.
Lots of love and hugs to you all.
XSammie
I am so sorry to hear about your precious dad.
Please, please get a second opinion. Prof Valle at the Christie is excellent and Helen at AMMF can also point you in the direction of other avenues.
I wish both you and your dad the best.
Sandie
Hi Sammie,
Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad. But I am very glad that you have joined in with us all as you are in the right place for support and help and you will get loads of each from everyone here. Having been where you are with your dad right now 5 years ago myself with my dad I so know how you are feeling and what you are going through at the moment. I know it was a big step for you to register and join us all and I am glad that you did.
I too am from the UK, in Dundee up here in Scotland and my dad was diagnosed and treated up here with PDT. Can I ask where your dad was diagnosed and where is being given his chemo and by whom? Sorry for the questions but the more info we have the better we can help.
Has your dad sought a second opinion for his CC and how would he feel about that? If not, I highly recommend he seek and opinion from Juan Valle at the Christie in Manchester. He is so very very experienced in treating patients with CC and your dad would be in very good hands with him. He has helped a few of our members and they only have such good things to say about him.
Here is a few links for you about Prof Valle and he can be found through this link –
http://www.christie.nhs.uk/about-the-christie/whos-who/our-consultants/juan-valle.aspx
Juan also is vice chair of our medical advisory board – http://cholangiocarcinoma.org/juan-valle/
Another great link that is totally UK specific is AMMF and you will also find lots of info re hospitals and treatment centres in the UK – http://www.ammf.org.uk/cholangiocarcinoma/specialist-treatment-centres/
I know that you are anxious about getting the latest ct results for your dad, that is so very common and we all go through that. Please do not give up hope though! I know it can be tough sometimes but please stay strong as your dad and your kids as well will need you to be strong.
You have reached out for help and we are here for you, you are not alone in this anymore. If you have questions just ask and we will do what we can to help. Helen who runs AMMF is a gem and should you wish me to I will contact her on your behalf if you like. I know that under the NHS system your dad is entitled to a second opinion from someone of his choice and I am sure that your dads current onc or gp would be able to refer your dad to Prof Valle and I am sure that he would be happy also to see your dad.
Please keep coming back Sammie and keep us updated on everything. We care.
My best to you and your dad,
Gavin
Sammi,
My wife was diagnosed in March with metastatic, inoperable, and non-curable cholangiocarcinoma. However, none of her doctors ever attached a time frame. She is undergoing a palliative chemo combo of gem and 5fu. She also has the complications of short bowel syndrome after most of her small bowel was resected (in March when the cholangiocarcinoma was detected). I appreciate each day, although I evaluate her condition each day (energy level, skin tone, etc.) for any changes.
One day at a time. I’ll pray for your dad’s health and strength for you.
Sam,
I, too, was told the same thing this year! It is a scary scary thing to hear. That was only 3 months ago on July 24th. I feel that my doctor was a little hasty in his prognosis. I am currently on the same chemo that your dad is. I have read the study that my onc got his information from. I was so scared at first. This site has really helped me understand more about my situation and where I really stand. I got a second opinion very quickly and, while there is still no cure for me, I know that I’m going to be here longer than a year. There aren’t many options out there RIGHT NOW to treat this canccer. BUT there are things in the works. You will find trials here that have helped some people, some have also responded very well to the Gem/Cis protocol. No two people are alike. You guys just can’t let the doctors get you down. Yes this is a rare cancer, yes it is SO scary, and yes you are both going to have good and bad days trying to handle this. Stay informed, don’t be afraid to research and ask questions and make sure your dad is in charge of his treatment. Don’t let doctors brush off your concerns. I wish you all the luck and I will be praying for your family as well!!
Cillie/Tabytha
Dear Sammie
We are the same boat with my husband being diagnosed in April and a prognosis of 3-6 months given in July. I know exactly what you are going through and how helpless you are feeling. I’m with Duke, help your dad to stay positive as much as possible and look at at as many options as you can. My husband just finished radiotherapy and the tumour markers have come down after a week of finishing. The radio will continue to do it’s job for up to six weeks after cessation. So there is always hope! Best wishes to you and all the luck in the world to your dear dad!Mandy
Dear Sammie, I am so sorry about your Dad but you have come to the right place for CC support and I also agree with Duke and will add a big AMEN to what he told you. It is good that you are open as Dad does not have to feel he has to hide what he is thinking. My husband and I used to talk and talk about the CC, treatments and future plans. We laughed a lot! It’s true that attitude is everything. We are big believers here in 2nd opinions and we do have members from the UK with lots of experience. I am glad you have been so open with the girls and the only suggestion I can give at this point is let them be a help in taking care of Granddad. Please keep us posted on how Dad is doing as we really care.
Been there, done that, heard the same diagnosis. I’m still here 15 months later and still going strong. This is way too early to give up. Gavin and others are familiar with the UK health system so they can give you specifics on what you should be looking for in terms of a second opinion, but your oncologist seems to be just a bit negative. There may be reasons to support the 6-12 month but the one thing that will maximize your Dad’s life is a positive attitude, which is what you and he need to be concentrating on.
You believe in the power of prayer. Great. Now multiply that by all those who will read your post and will add their prayers to yours. You and your Dad are not alone in this fight. We can’t be there to physically hug you and dry your tears, but we are there in spirit.
You Dad has been getting chemo for only about three months. Some people respond quickly, others may take longer to see results. There is no reason to panic if the CT scan does not show a decrease in tumor size or numbers. The best help you can be is to show your Dad a positive attitude and give him lots of smiles and hugs. You’ve got a week before meeting with the onc. It will be the longest week of your life but the two of you will get through it. As a patient I know that I worry more about my wife than I do about me. Your Dad probably feels the same about you. Talk about your hopes and fears and face the future together.
Duke
Hi,
I’m Sam and my darling daddy was diagnosed with Cholangiocarcinoma on 4th July 2014. I’ve been looking at the discussions on here for some time but have only just plucked up the courage to register.
Sadly, my dad’s cancer is terminal and there is no possibility of surgery or cure so he is currently having gem/cist to extend his life for as long as possible. He’s been told 5-6 months if the chemo doesn’t work and 6-12 if it does.
He has recently had a CT scan and we are meeting with the Oncologist on 30th to discuss the results and establish if the chemo is working. I’m so anxious about this meeting as my dad doesn’t think it’s worked – I’m praying that it has.
I’m a single mum of two daughters aged 9 and 7 and both girls know their beloved grandad has cancer. I’ve answered their questions honestly as we are a very open family. I struggle daily with the situation and find myself in tears most days. I try to take one day at a time but I’m totally devastated at the prospect of losing my father so soon.
Well that’s me, I’m sure I’ll be popping up elsewhere.
Thanks
S x
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