My Dad has CC
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It seems to be one step forward, two steps back. Dad had his metal stent in Minday and whilst initially it was working and his bilirubin levels were falling, they have now stopped! He has got to have an x-ray tomorrow to find out why.
Feel so helpless as he really wants to get home and also start his Chemo, which until his level is 50 he can’t.
He is still feeling well, no pain, itching and still eating lots. Which I am counting as a blessing.
He has made a friend in hospital who also has CC so they have been sharing their progress together.
Thanks for listening
Hello Andie
I’m glad you reposted with the “UK” in the title ‘cos I missed this thread first time round – my sister’s cc is deemed “inoperable”; she was diagnosed at Kings (you can see my thread in the Intro section under “My Lovely Sister – by LaLupes”). She was diagnosed in August. We actually found out what she had by reading the diagnosis on the “Day Release Sheet” she was given when I took her home on a 24 hour pass for August Bank Holiday. Until then, the hospital had just said “we don’t know yet”.
As I’ve said elsewhere, it’s her last chemo tomorrow & she’s doing very well. I really hope your dad gets treatment quickly.
I only really know the London hospital but I’ve definitely heard good things of Prof Lodge in Leeds.
Pauline (also in London) has done a lot of research & told me about a Dr. Harpreet Wasan at Hammersmith, whom you might like to contact.
GOOD LUCK!!!
Julia x
Andie,
Just saw your message and wanted to welcome you here also. I too am a fairly new person here. I was diagnosed a little over a year ago, and didn’t know about this site then. I came on board a short time ago after my cancer returned following surgery. I wished that I had known about this site then. BUT I do now and so do you. This is the BEST place to be to find out things about CC and to get the much needed support.
Welcome again.
Linda Z.
Andie, you have no idea how big your family has grown…..we are all here for you! I think you will relax a little once your father is moved to a good hospital where they are familiar with CC. You are doing all the right things and help is just a day away. Good luck on the move and please keep us posted.
Andie,
You are NOT alone! We are all here to walk this journey with you and your family. Come here anytime with your questions…feel free to vent, celebrate, anything you need!
You and your family will be in my thoughts and prayers.
Hugs!
PamThank you everybody for your kind words of support. The good news is that after a week of waiting to be moved Dad is definately going to the QE Hospital today and having his stent put in tomorrow, hopefully this time it will work.
We haven’t been told anything about his condition by his current hospital, probably because they know anything about it. I wrote a list of questions for them to answer and they couldn’t even answer one! Including what stage it was and where, surely that should have been in the report! I will be taking the same questions to the QE. It was this hospital that looked at Dads CT scan and said it was inoperable, we still don’t know why so hopefully after the stent tomorrow they will tell us more. I think it came as a shock to the doctors as they just thought it was scar tissue on his scan. My Dad is 62 and still feels fit and healthy. He did have colon cancer 10 years again but fully recovered from that.
I have looked into specialists and found a Peter Lodge at St James Hospital, Leeds, a Prof David Cunningham at Royal Marsden and also a Dr Valle at Manchester. When I find out more we are definately going to get a second opinion. Mainly because the treatment we have had so far has not been great but also for peace of mind that we have searched all options.
When my Dad was told he had CC the doctors never even mentioned treatment to him and when dad asked he was told “it won’t cure you, maybe give you an extra year or two!” Don’t they realise an extra year or two is everything to a family who have just been told they may lose someone so precious in a few months.
Thanks again for listening, I feel like i have found some hope with this site, when at times i feel so alone.
Hi Andie,
Welcome and sorry you have to be here. I’m not sure how old your dad is, but my mother had a sucessful liver transplant last fall for CC. It is called the Mayo protocol and several hospitals in the US follow it. I know Ireland does also.there are many criteria, but if your dad is not too old ( my mom is 67), in good overall medical condition, tumor under 3CM ( usually caught in the earlier stages) has NOT spread to lymph nodes or other organs, please consider looking into this option.
You can do a search for transplant on this site or go to the Mayo website for more info. Your current doctors may not be familiar with this protocol. Our doctors locally did not tell us it – my point being that second opinions and research on your end can prove beneficial. You have come to the right place
Feel free to email me if you have questions.
Ashley – Niantic, CTHello dear Andie and welcome to our wonderful family. We are very sorry to learn of your dad’s DX. You are already doing the right things by learning as much as you can so you can be his best advocate.
My husband Teddy had a Whipple almost 5 years ago and he is now 77 and doing pretty good. The CC returned a year and a half ago near where his duodenum used to be. He had radiation to shrink it from 7cm to 6cm as it has to be under 7cm for Cyber Knife. 3 months after his 25 radiation treatments he had the magical Cyber Knife. I know this much: if it is under 7cm and not in the liver he could be a candidate. Again it may depend on where the tumor is exactly. After 3 treatments in one week….all done. That sucker was zapped like a fly with a fly swatter. He now has 2 new tumors and one is under the liver. The Radiologist has let us know that they are very small but he feels he can do the CK again to get rid of them. We will know more the end of April when we see the Oncologist. Teddy’s follow up regime is visits to the ONC every 2 months along with monthly LABS and vitamin B12 shots. Please feel free to e mail me if you like. An expanse of water won’t keep us from helping each other. You will find that you have truly come to the right spot.Hi Andie,
Welcome to the site, although I am sorry that you had to join us. I know how you are feeling right now as my dad was diagnosed back in summer 2008 with inoperable CC. I am also in the UK, up here in Dundee in Scotland. I would also be angry if my dad was given his diagnosis when he was on his own. When he got his diagnosis, myself and my mum were called into the hospital and the 3 of us were given the news at the same time. I can still remember what it felt like to hear these words, not good at all.
Have your dads doctors spoken with you at all about what treatment options there are for your dad? Have they talked about chemo or radiation? In my dads case, they felt like the best treatment at that time for him was PDT, photodynamic therapy. Perhaps that is something that you could discuss with your dads doctors and this type of treatment is available at a number of hospitals in the UK. If you want more info regarding this please just ask and I will talk more about my dads experiences with it.
As to Cyberknife, there are some people on here who have had that procedure and I am sure that they will be along soon to discuss that with you. As I understand it, there is only 1 clinic in the UK that does Cyberknife, in Harley Street in London and I am not sure if that can be done under the NHS.
Has your Dad been offered the services of a Macmillan nurse yet? Your dad should have been told about Macmillan nurses by now and I strongly recommend that your dad has one, he is entitled to one. They do so much great work and my dads Mac nurse was invaluable to us.
It souds like your dad has a great attitude and is right up for this fight, and a positive attitude will definitely help here. Please keep coming back here as you will get a ton of support and help from us all. If there is anything else that I can help you with then please do not hesitate to ask, if I can do anything at all I can do to help then I will.
My best wishes to you and your dad,
Gavin
Hi Andie, sorry that you and your Dad are dealing with this disease, but know that you’ve come to the right place.
Might be a good idea to re-post but with a topic title asking for UK information, you might get quicker responses from fellow UK members this way.
CCF is in the process of providing international sections for other countries. I’m in Canada, so I can’t direct you to any clinics or hospitals there, put can tell you that there is a great deal of good information within this site that pertains to all of us.
Sounds like your Dad’s treatment is already underway… stenting is very, very important and the most immediate treatment needed to extend his life.
You don’t say why it’s inoperable? Where is the tumour? How old is your Dad? How did they find it?
You and your Dad have great attitudes, which is very important.
Hang in there Andy,
Dianne
After 3 weeks in hospital with jaundice the doctors have just given us the news that my dad has got CC. He had 2 ultrasounds, CT Scan, failed ERCP and a PCT for a stent and all the while they thought it was gallstones then scar tissue. I’m angry that he was on his own when they told him and also that they told him he’s got months to live, possibly a year if he has treatment.
He is due to be moved to the QE hospital in Birmingham UK tomorrow to have another stent put in as the first one didn’t work. Since we have been told I have been on the net every hour trying to research this cruel disease. My dad is still feeling very well and is determined to fight it. All we know is that the tumor is 1.8cm and below the liver and isolated but inoperable according to the QE. Hopefully we will know more tomorrow if he is moved, only he has been waiting over a week to move to the QE! I know reading this forum the survival rate is not good but if we can keep him alive a few years instead of months then i will do everything i can to do that, he is my world!
Are there any UK members who have had dealings with inoperable CC, and can recommend treatment or hospitals. Anybody had Cyberknife, we are willing to go private.
Thanks for taking the time to read this.
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