andie
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My Dad has a metal stent which they fiited via PCT. He had a EUS 3 weeks back and nothing had changed. Dad was badly jaundiced in Feb and at one point his bilirubin was 600+ . His eyes at the moment are clear. The local hospital, where he will have his chemo just want to wait and see if it puts itself right as it may be an infection and Dad is on antibiotics at the moment for his Chemo, but we don’t want to wait till next Wed so dad is phoning the liver hospital today for their advice.
Hi again,
No they haven’t mentioned surgery. From what I can gather even though it is a small tumour there are too many risks with regard to arteries/veins. Dad also had a big operation 9 years ago and had most of his colon removed so not sure if that effects the decision too.
Our oncologist is hoping the Chemo will keep it the same size but a shrinkage would be a huge bonus!
I have been in touch with a Dr Gaya at the London Oncology Centre regarding Cyberknife and he has agreed to look at Dads scans once he has had Chemo. This is something I will be keeping in mind, Dad wants to go one step at a time and have the Chemo and results from that first. As you know Cyberknife will be expensive but you never know the local PCT may fund it if pushed as I have read that they are recieving NHS referrals at one of the Cyberknife centres in London.
I’m glad they are both feeling well but I know what you mean about making it seem unreal. I dread the day that he starts being in pain or loses his appetite.
I will update you with how my Dads chemo goes and let me know what Professor Lodge says, I have heard very good things about him.
Keep positive.
Big hugs back to you and yours.
Hi Jemima,
If this was my Dad I would want him to go on holiday, enjoy being with family and have a good time. Like you say it was already planned and it would give your Mom something to look forward to before she starts treatment.
My Dad is due to start his first cycle of Gem/Cis on Friday. Like your Mom he started having symptons in February and was diagnosed April 10th. He was badly jaundiced and luckily his stent has worked. We have had to wait for his bilirubin level to come down before he started his treatment. My Dads is inoperable but we are hoping this treatment will work.
If you don’t mind me asking, how is your Mom? My Dad still has a good appetite, his jaundice has gone and apart from being a little tired now and again (mainly due to doing too much in and around the house) you wouldn’t know he was ill.
Best wishes and enjoy your holiday.
Hi Linda.
Thank you for mentioning there are other treatments Dad could try if this one doesn’t work. It has been on my mind the last few days. I try to keep positive and push the negativeness of the first Onc out of my mind but somedays it’s hard to do. This had made me feel much better.
I will never give up! My dad is my world and I will fight this with him.
Best wishes
Hi Marion,
This site has helped me remain positive so I hope that people who go on the Macmillan site seek it out too.
I watched a programme last night about a little girl who’s suffering from a disease that ages her fast. She wasn’t supposed to still be here as they only gave her a few years when born. Through courage and determination and medical progress she is now at secondary school. One of the things she said last night put it into words about the so called experts.
They said the Titanic was unsinkable!!
Best wishes to you and your family
Thank you all.
Yes Gavin, he did enjoy his Cheese on Toast!! He now enjoys everything, he has gained a stone in weight so is back to his normal weight now, give or take a few pounds. I just hope the Chemo doesn’t alter his appetite too much.
Well, what a difference a doctor makes!!! and the one we saw today was caring, lovely and most important POSITIVE!
The doctor was the surgeon who had put my Dads stent in, and whilst he told us the biopsy was positive for CC, the tumour was small, contained and had not spread. He had been involved in the ABC trial and was positive my dad would benefit from this treatment.
We told him about our experience with the oncologist Wednesday and he was not impressed. He said my Dad hasn’t got an expiry date, no one can say how long but he has known people survive 4 years and more. It can be and aggressive cancer but at the same time it can be slow growing and kept at bay, no one knows but he will do all he can to help my Dad. He said whilst the Oncologist isn’t a specialist in this area and if he is so even though the Chemo will be at our local hospital he will at my Dads request look at the future scans and treatment plans.
He also told us that Dad should be on a low dose antibiotic whilst on Chemo as this will help avoid infections, something that they hadn’t told us, and also to go and get his blood test the day before the chemo to help speed things up on the day.
My Dad and I feel much better today, and for once I have shed tears of hope and joy.
Thank you everyone and best wishes to all of you.
Thank you Margaret!!!
You made me laugh out loud with the butt stamp!!
Feel much more positive today. Dad is continuning to put on weight and do little jobs such as pottering in the garden, shopping, going for walks and even decorating. If we took any notice of the first doctor he really should be here, they told us no treatment and months and he started having symptons February!! So we are holding onto that.
I knew more than the Oncologist about CC, which shocked him.
We are going to see the Docotors at the Liver clinic today who did my Dads stent and EUS/Biopsy. We already know the biopsy report as the Oncologist at our local hospital had a copy of it on Wednesday. Hopefully they will be more positive as looking back at wednesday I think because my Dad is classed as terminal due to being inoperable the Oncologist thought it was a waste of time having treatment. also when is he classing 11 months from, february when symptons started, April when diagnosed or after treatment finished!! Our goal is to go back in 11 months and prove him wrong!!
Take care and many best wishes to you and your family.
Thank you all. The Oncologist got the 11 months from the ABC 02 trial results. This is the Chemo my Dad will be having Gem/Cis over a 3 week cycle.
I did tell him my dad was not a statistic and that i wasn’t interested in hearing months as i’d been on this forum and heard survivor stories of years. He did seem rather shocked. I then said could I have the scan and reports for a second opinion and he said yes. My Dad wants to wait and see what the doctors at the hospital say at the QE Bham first though as they were the ones who told us this treatment was successful, my dad was fit and the tumour was small. We see them tomorrow to discuss the EUS/Biopsy results.
The problem is that whilst the QE deal with my Dads CC, we have to go to the local hospital for Chemo, this was the hospital who told my Dad there was no treatment and he had months to live in April.
Will let you know what the QE hospital say tomorrow.
My dad was diagnosed 10 April with exactly the same. We have been told today that with Chemo he has 11 months. Reading your story Narinder has given me hope. What supplements does your Dad take?
Hi Kathy,
Thanks for sharing your experience with this Chemo Combo as it’s the same one my Dad will be having. I have taken note to ask for the heating pad just incase they don’t offer it.
I was just wondering are you taking any supplements whilst on chemo, ie milk thistle?
Best wishes
Hi Theresa,
My Dad was diagnosed with inoperable CC April a few weeks ago and apart from being jaundiced (which is now going thanks to the stent) he is doing things as he normally would.
I check this site most days and to read a story like yours ‘makes my day’ My dad is due to start Chemo soon (Cisplatin/Gemcitabine) I’m hoping like your mother-in-law it controls the growth. At the moment they say it is 1.8cm and he is lucky they have found it this early as usually it is at a much later stage before it causes jaundice. The unlucky thing is it effects important viens/arteries so an operation is out the question.
Best wishes to you and your family
Panic over hubbie will be picking our birthday boy up! he will be 9.
Hopefully it won’t take too long as it’s one of the first appointments. Only problem is Dad seems to get really knocked out, even by light sedation!
Our son is very close to my Dad, when he was born my Dad was recovering from a major op for bowel cancer, we still say the birth of our son helped him to beat it. Life is cruel though he beats bowel cancer only to get CC!They bonded really quick as I was always at my parents when I was on maternity leave.
Best wishes
Andie
Thanks Marion,
I didn’t make myself clear in my first post, Dads appointment is the 17th May. Think I will have to ask hubbie to pick our son up from school, I could ask one of my friends but its his birthday so ideally either myself or my husband need to pick him up. If not I will have to leave and pick Dad up from hospital later. It’s hard when you’re an only child and the only one that drives, saying that though I wouldn’t want anyone else to take Dad!
