andie
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Hi Pam,
So glad your Dad is able to get his chemo and is doing much better. CC is certainly a rollercoaster ride. Hopefully my Dad will be getting his first cycle of chemo next thursday.
Best wishes
Andrea
Hi Jemima,
So glad you and your Mom had a wonderful time on holiday. I have been thinking about your Mom and whether she had started her treatment. I’m really pleased she has and hope that she continues to feel well whilst on it.
My Dad has got a start date of Thursday 2nd September. Fingers crossed his bilirubin behaves. It was 68 last week so only 18 to go before Chemo can start. That gives him 2 weeks and he does seem to be getting lighter by the day in colour. He has a scan tomorrow to be used as baseline for when they re scan again in 3 months.
Is your Moms first day an 8 hour day of Chemo? My Dad is having Gem/Cis too, and was told his first day he would be there 8 hours and day 8 would be a shorter day. How did your Mom cope with that? Did anyone stay with her?
Best wishes to you and your family. Please keep us updated.
Andrea x
Hi again,
The QE is a Liver Specialist hospital. If you check on their Website it should give you more details. They took part in the ABC02 trial which is now the standard Chemo treatment for CC (Gem/Cis) Dad sees Mr Bramhall and also on occasions Mr Maya, who have both been very nice. Another member on here was also treated at the QE. His story is a positive one, It’s under the Good News/Whats working. It’s called “my story incase it helps’ by andy
I’m not sure surgery wise if they would treat CC this way, as they wouldn’t my Dad. Perhaps one of the other hospitals listed would be worth contacting. My Dad didn’t want surgery once the Doctors at the QE had ruled it out so decided to go with Chemo.
My Dad had an external bag when his stent was fitted and once the Doctors were happy the bile was flowing they capped it off. It was left in a few weeks as precaution but after his check up at the hospital they removed it.
If your Mom is up to the holiday to Wales then I would 100% go. It will do you all good. Enjoy it if you do go. We went to Wales last week in July and had a lovely time.
Take care and best wishes to you and your family
Hi PGTips,
I’m also from the UK. My Dad was diagnosed in April after 5 weeks in hospital for suspected Gallstones due to Jaundice. He had various tests including ERCP, PCT and Ultrasounds at his local hospital but it wasn’t until he had a second CT scan and they referred it to the Queen Elizabeth Hospital in Birmingham that they diagnosed CC. Our local hospital didn’t seem to know anything about CC and when they had his results they told him he had a few months to live and no treatment was known. We were devastated, and angry they had told Dad this whilst he was on his own.
Dad was transferred to the QE and had a metal stent fitted, he also has extrahepatic CC which is outside the Liver. The QE were lovely and whilst we were told no operation could be done due to location (to near main artery/vein) he would be able to start Chemo which will hopefully keep it stable or better still shrink it. They also told us our local hospital was wrong to tell us he only had months left as this was not the case. Dad did have a biopsy via EUS, they only confirmed it was CC as to stage it they really need to operate and get inside to do that.
We have had a few set backs, Dad turned Jaundice again the week before his Chemo was due. This resulted in him going back in the QE for a stent change. It should have been a 3 day hospital stay but turned into a week due to an infection BUT he is feeling much better now, gaining weight, eating lots and going out and about. All this with no treatment apart from the stent. So 7 months along the line he is still here when the doctors originally said he wouldn’t be!
Chemo is booked for 2nd September and hopefully he will get there this time.
My advice is never give up, get second opinions, and take one day at a time. There will be a rollercoaster ride ahead but you will be suprised how strong you can be when you need to. Also this site has been a wonderful support.
Have you got a Liver specialist Hospital near you? If so ask to be referred to it. If you type in Hospitals in UK in the search engine it will list posts that discuss them.
Good luck to you and your Mom
Hi Margaret,
So glad Toms tube change went well and he’s feeling so great.
My Mom has been feeding my Dad every few hours too, as he lost weight during his stent change in hospital, mainly due to an infection he picked up. He is slowly getting there, he’s gaining 1Ib per week, still got a few to go but hopefully he will get there just in time for chemo to start. My Mom looks after my son whilst i’m at work and he said “Nan sure is trying to fatten Grandad up, are you sure she doesn’t want to eat him?” Think his imagination is running wild! They had tried to cut his dairy and fats out of his diet but the Doctor said to eat what he wants as it’s more important at the moment to get the calories. He doesn’t eat unhealthy but Mom is allowing the odd cream cake and trifle now.
Wishing you and Tom all the best
Andrea
Dads visit with the Oncologist went well. Dad has a CT Scan next Wed so they can use it as a base line for the Chemo. Chemo hopefully will start on Thur 2 Sept, if bilirubin is down to the magic 50! It is 68 now so we have nearly 2 weeks to get there.
Dad is putting on weight slowly, 1Ib a week, but it’s better than nothing. We went to RAF Cosford Thursday and Dad and my son loved looking at the planes. Dad enjoyed it but it tired him out, though my sons constant chatter tends to do that to you! He also enjoyed the Sound of Music last week.
My thoughts as always are with everyone of my CC family.
Best wishes
Andrea
Hi Roni,
Whilst I’m sorry you have had to find our site, may I welcome you to it. My Dad was diagnosed with inoperable Extrahepatic CC in April, after having jaundice since February. The doctors originally told my Dad 2-3 months but he is still here without having any treatment apart from Stents to allow the bile to flow. A second opinion told us that whilst it was inoperable Dad could have Chemo Gem/Cis. This should have started in June but Dads original stent blocked and had to be extended, so therefore Chemo was delayed due to the onset of jaundice again. We meet with the Oncologist again tomorrow.
CC brings many rollercoaster of emotions, never give up hope and get 3rd and 4th opinions if you wish. Have they mentioned Chemotheraphy or any other treatment? Your Dad will probably have to recover from surgery before they can give do any of this.
Best wishes to you and your Dad
Hi Gary,
I’m not far from Brum! Upper Gornal near Dudley. Dad is being treated at the QE Hospital, Birmingham and so far they have been lovely (he was transferred here when our local hospital couldn’t do anything else for him) He will have chemo at the local hospital which is in Dudley as it is nearer and they will do the same chemo combination that the QE would do. All scans, stents etc will be done at the QE though as they specialise in the Liver where Russells Hall is just a general hospital.
I will be keeping you and Donna in my thoughts, and remember any questions, just ask, someone is always here to help.
Andrea
Hi Gary,
Whilst I’m sorry you have had to find this site, may I welcome you to our wonderful CC family. I am unable to answer your questions as I live in the UK but I’m sure someone will be on here to answer your question very soon.
My Dad was diagnosed with inoperable CC in April after being Jaundiced since February. Like your ex-wife my Dads is Extrahepatic. To date he has had 2 lots of stents fitted, the second one just before his Chemo was about to start, therefore delaying his treatment. We are hoping this will finally start in the next few weeks.
You and your ex-wife have certainly had a rollercoaster ride the last few months but she has the right attitude and I believe this helps. My Dad is positive and determined to fight this. He was originally told he had a few months to live and no treatment was available, since then we have been told he can have the chemo Gem/Cis but this has been delayed due to Dads stent blocking and the jaundice returning. He had a rough time in hospital as he got an infection and for a few days like your wife he seemed to go down hill a bit, but he has now picked up and is regaining his weight and going out again. Your ex has had a big op so it is understandable that she will feel weak etc, especially if she is doing too much.
Keep positive, take one day at a time and remember that there are people on this site that know what you are going through and will be here for you and your family. Also when I joined I read the Good news/what’s working section of the forum, after reading so much scary stuff on the internet I found this helped to hear the good news and positive comments
Best wishes
Andrea
Oh Lainy, you do make me laugh, Teddy the penguin!! I love penguins and could watch them for hours at the zoo. Next year we are going to Orlando and we are so looking forward to visiting Seaworld (and the penguins). Now everytime I see one I will be thinking of you and Teddy.
So glad everything is working out fine with the hospice nurses, and hope Teddy has some relief from his ‘constipation’. My Dad suffered from this after having his IV antibiotics, in the end he had to have natural remedies as the medication he was given made him worse. He has an illestomy bag, so has to be careful what he takes.
I hope Teddy enjoys his movie next week, what is he going to see?. My Mom and Dad are going to see The Sound of Music, musical tomorrow, something I didn’t think they would be doing back in March. They are both looking forward to getting out as Dad hasn’t been out much the last few weeks. Next week hopefully we are going to the RAF Museum, something my 9 year old son is looking forward to doing with his Grandad. More happy memories to make and share.
Wishing you and Teddy all the best.
Andrea x
What wonderful news!!!! Congratulations!!!! This sort of news makes everyone feel great.
Best wishes
Andrea
Hi Lainy,
Glad you and Teddy had a wonderful time with your family. I have been thinking of you both.
Look forward to hearing from you soon and glad Teddy still has his outstanding attitude.
Love and best wishes to you and Teddy
YEAH!!! 2nd piece of good news, Dads bilirubin is now 143, it has dropped 151 in 2 weeks. A big improvement on the 16 it had dropped previously. He has an appointment a week on Wednesday to see the oncologist, hopefully if it keeps falling as much he will be able to start treatment.
Gavin, We did go away and whilst I didn’t want to at the time I’m glad we did. My son loved staying at the cottage on the farm, feeding the chickens, ducks and pigs and making friends with the cats. We took some lovely photos to share with Mom and Dad. It was also lovely coming home and seeing the difference in him, something I probably wouldn’t have noticed so much if I’d have stayed at home.
Katja, Dad is still yellow tinged but his urine is normal and the itching has gone, plus the appetite has returned. If his eyes where whiter he would look more tanned than jaundiced. From last time though I know it takes a while for normal colour to return. The bilirubin test results today have put our mind at rest that the stent is working. Fingers crossed Chemo can start soon.
Kris, yes good news is definatley a tonic, 2 weeks ago I felt like my world was ending again but today we all feel great. It goes to show you never know what’s round the corner and even though it’s hard you do really have to take it one day at a time.
Best wishes to everyone
