andie
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Thanks Pam, he is doing really well and I’m so proud of him. He is not taking anything for pain relief as luckily no pain. He is taking ciprofloxin and has been since May.
Lainy, my Nans nose runs too but my Dad is in a different league, it’s like someone has left a tap on and it’s happening all the time now. No headache or facial pain just drip drip drip!!
I have read somewhere that acid can cause excess mucous and also that when the liver is under pressure then excess mucous can also be produced to filter out the toxins! wasn’t sure if anyone else had any experience of this.
Hopefully the doctor will prescribe a solution.
Hi Gavin,
Yes he was getting it most nights and always around 5pm before his evening meal, which was therefore stopping him from wanting anything to eat,but luckily the papaya has put a stop to it. The celery was working too, I read on the internet about it and thought it was worth a try. Dad takes 3 tablets after his lunch and 3 after his evening meal and so far so good. He also has a stick of celery after his evening meal too.
Hope you are well and the strong gales haven’t been too much trouble for you in Scotland. It is very windy here today, I have a feeling I will be doing my impression of Mary Poppins if I put my umberella up lol.
Best wishes to you and your Mom
I will get to wear a Back sign. You can write or put pics on it so when you are running (or walking) other people get to read your message. I will put that I’m taking part for my Dad and Cholangiocarcinoma Family. I will hopefully be able to put the CC Tree on and also mention the UK AMMF CC Charity.
Sadly the friends I are running with have also been touched by cancer. My friends brother recently passed away from Bone Cancer and my other friend has lost her Dad recently to brain cancer. It will be a very emotional day but so worth it.
Hi Lainy,
Hope you are well. Dad said it feels much better having the bag directly round the hole rather than the tube and bag on his leg as it was starting to irritate him. I’m keeping everything crossed it works as I think his mood would improve too.
I work in the same building as the DN (I work with the Health Visitors) and they have all been really lovely to Dad and he seems to know more about what is going on at work than me lol. He said they have been using different barrier creams but I suppose it’s trial and error.
So overall a good report and I too hope for some more good days.
I made him laugh the other day. I am entering Race for Life, which he thought was funny as I must admit I’m not the sportiest of people. I am doing it with some girls from work so it will be more of a walk and talk for life than a race! Should be fun and I will be doing it for my Dad and my Cholangiocarcinoma family.
Take care x
Dear Mamamia,
My Dad too is terminal. It is hard, very hard and no words anyone says will help. My son is 9 and loves his Grandad to bits, we haven’t told him yet how seriously ill Dad is. Dad is very jaundiced but he has been since February so to my son this is normal now. Luckily Dad is pain free but my son knows Grandad can’t play football any more so he is happy to play cards, watch DVDs etc, he has adjusted very well, infact better than I have.
Everybody handles things different but I wake up every morning wondering whether Dad will be worse or in pain today and I go to bed dreading what the next day will bring, this is why I haven’t told my 9 year old as I don’t want him worrying the same.
My Dad never had Chemo as his bile level was always too high. Even without any treatment he is still with us nearly a year after his symptoms started. He has been told twice he only had a few months to live and twice now he as outlived those timescales.
You will find the strength from somewhere to carry on and put on a happy face, for your Moms sake. I find my strength from my son. He helps us to maintain a new normal. I really do think a positive attitude helps.
Sending best wishes to you and your Mom.
Latest Update on Dads drain.
It has been flushed again and the DN said the tube isn’t split. Dads bile output has gone from 200ml per 24hr to 100ml per 24hr the last few days. Whilst it is still flowing they don’t want to keep flushing it. Last time it stopped flowing completely. They think because Dads food intake is much less then this is why his bile output is less. He is still eating but since Christmas he eats half of what he used to.
I contacted the Macmillan Nurse at the hospital and she also agreed that the lack of bile could be natural deteriation of Dads condition, especially as he has no fever, chills, high temp which would indicate an infection or start of blockage. Luckily still no pain, which I am always thankful for.
We are now 4 months since were told Dad had 3-4 months and he is still doing amazingly well, I am so proud of him. He never complains, I love him so much, he is amazing.
Best wishes
Andrea
Barbara, Thank you for you kind words.
Margaret, it does leak from where the hole leaves his body but it is also leaking around the disc that the tube is fitted on ??. It flushed much easier yesterday as the nurse said the day before there had been some resistance?. Dad had his usual 100ml in the day but over night it has stopped again. He ususal collects 100ml overnight too making 200ml per 24hours. We can’t understand why it is stopping flowing at night. He is due a tube change as he has had it 4 months. At the time they didn’t think he would still be with us to ever need a tube change.
Both parents are getting very upset about it and I just don’t know what to say or do. I have mentioned the tube probably needs changing but Dad said he isn’t going back in hospital so unless they can do it at home it won’t be done!! I’m hoping he will change his mind but Mom isn’t helping the matter by getting upset and saying if he goes in hospital he may not come out. I think i’m going to ring tomorrow and see if it would be a day case as if Dad knew he hadn’t got to stay overnight then i think he would go in.
Best wishes
Andrea
Well the drain is playing up again!! The nurses have flushed it but it is still not draining like it should, they are coming in again later to flush again but they have made Dad an appointment at the Liver hospital next Friday, which he is not very happy about at all!!
They think the tube has split because when they are flushing it is leaking where it shouldn’t. I have told Dad that he is due for it to be changed but he doesn’t want to go in hospital again, he is scared and so is Mom. It is heartbreaking to watch and see the fear on their faces. They just want to be left in peace and are fed up of the nurses and now the thought of a hospital stay.
The good news is that he is still pain free, something I pray for everyday and am truly grateful for. And I must admit after the nurse mentioned the hospital I hadn’t seen so much fire and determination in him, pity it was for the wrong reason, I really hope he changes his mind and will go to his appointment.
Best wishes to all
Andrea
Dear Jen,
I read your post through my tears, as it reminds me so much of what I am also experiencing. Like you my Dad is my hero.
I’m so glad your Dad is still doing well and I’m sure he will be with you to celebrate his 60th and make many more precious memories. He is a truly amazing man and your are an amazing daughter.
Best wishes to you and all your family
All my love
Andrea
Looks like trial has been put back until March 2011. Hopefully this will help CC patients in the future.
Trial Name (Short): ABC-03 Trial Name: Randomised phase II trial of cediranib (AZD2171) vs. placebo in addition to cisplatin / gemcitabine chemotherapy for patients with advanced biliary tract cancer Description: This phase II trial builds on the ABC-02 trial in which patients were randomised to gemcitabine alone or gemcitabine plus cisplatin (CisGem). The CisGem arm showed a 3.5 month survival advantage and a 2 month progression free survival advantage.
In ABC-03, the aim will be to see if adding cediranib to CisGem will be more effective than CisGem alone. Cediranib is an unlicensed VEGF inhibitor. This trial is part of the NCRN/AstraZeneca collaboration
Trial Status: In set-up
Trial Coordinator: Elka Humphrys Email Contact: Email Trial Summary: Opening Date: 01/03/2011 (Estimated)
Recruitment Target: 136 Funder: CRUK & AstraZeneca
Chief Investigator: Dr Juan VallePage last updated on 11/01/2011 by Colin Lunt
Hi Andy,
So glad to hear you’re still doing well. My Dad was told he would have plastic stents put inside his metal if they stopped working. They would have to be replaced every 2-3 months. My Dad has an external drain now though as unfortunatley his tumor blocked his stent completely. He is managing with this ok though.
Hopefully someone will be along soon with more experience of metal stents.
Best wishes
Andrea
Betsy,
Thanks for posting that article, it made an interesting read.
Back in April when my Dad was diagnosed he was told quiet bluntly whilst in his own, you have terminal cancer and 2-3 months to live. A week later after being transferred to a Liver specialist hospital we were told that Dad could have Gem/Cis once his bilirubin level was low enough and that they had had a great success with this treatment. To us at the time this meant years not months. A few weeks later a meeting with the Oncologist didn’t go as well as we hoped when he said “this treatment won’t cure you just give you a few more months” something at the time we didn’t want to hear. As a daughter watching your Dads face crumble and fill with fear is something I wouldn’t want my worse enemy to go through. That night I worried that would it be worth the chemo effects for just a few months more, the answer was yes it would as my Dad would still be here with us and even then I was looking for trials or anything else that could prolong my Dads life.
Chemo or any other treatment has never got to become an option, Dads bilirubin has never been at a safe enough level, the tumor blocks the bile duct and the stents are useless, his only relief from the bile is the external drain. This news was given in September, this time by the Clinical Nurse Specialist after Dad had had his external drain, she told us 3-4 months max and Dad would just go more tired and eventually enter a coma. Mom went to pieces and it was the longest journey home. Our hopes had been pinned on Chemo and now they had been dashed.
Dad is in that 4th month now and apart from being more tired he said he feels no different than he did in September. He looks thin, which is so hard to see but he’s still got that sparkle in his eyes. I now wonder whether chemo wasn’t meant to be for a reason, perhaps Dads quality of life would not have been so good and the summer days out together wouldn’t have happened. Dad has refused hospice help at the moment as he wants to keep things as “normal” as possible. The DN come everyweek and his BP etc are all fine, no fluid retention and most importantly no pain, he can still take care of himself and doesn’t need Mom to help him with anything. When the time comes then we will call on home hospice help, and if Mom feels she can’t cope then Dad has agreed to going into Hospice. I know that day will come sooner rather than later but for now we take it day by day.
Dear ANP,
New Years Eve my Dad was really breathless, so much my Mom wanted to phone the doctor, this came on quickly over 2 days. We don’t know if it’s a coincidence but the next day his external drain started to block. The DN flushed his drain and at the same time he restarted taking his fortijuice drinks twice a day. He is hardly breathless now. We think the drinks are helping him as when he stopped taking them his breathing was worse, the doctor had checked my dad chest and stomach for fluid but they were clear so he has put it down to lack of nutrients.
Did the doctor check your Dad’s lungs. chest and stomach yesterday?
Does your Dad have a stent or any signs of jaundice? as this can also cause you to be breathless.
Andrea
Dear Cindy,
My Dad was diagnosed in April after being jaundiced for 2 months. They told him without treatment he’d got 3 months max. Dad is still with us and hasn’t had any treatment apart from stents/external drain. Yes he’s more tired, jaundiced and lost weight BUT he’s still with us and luckily pain free. So no one can really say how long anyone has got. Just enjoy each day, even the bad ones as these make the good ones so much better.
Best wishes
Andrea
