andie
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Thanks Katja,
I don’t really want to go but Dad is insisting so I have compromised and said I will come home Thursday night if he has the cholangiogram and gets the results next week. If it’s the week after my husband is scheduled to have his wisdom teeth out on the Friday so I will be inbetween 2 hospitals 2 hours drive away from each other!
Dad seems a little breathless today, I’m not sure if jaundice causes this or whether it’s because it was his first day out in 2 weeks yesterday and the travelling and hospital appointments tired him out.
He is drinking lots. Fingers crossed it’s just another blip in this rollercoaster ride and the results next week will be ok.
How is your Dad getting on? Was he on a clinical trial?
Best wishes
x
Dear Fightingformom,
I can relate to point 4. My Dad was diagnosed in April after being jaundiced for 2 months. We are still no further forward intreatment plans has his bilirubin keeps going up to much to have Chemo due to stent infentions. Dad too has said he is fed up and sick of it all, which is a worry as he was so positive at the beginning.
I will keep you in my thoughts and prayers.
Best wishes
Hi Rick,
Thanks again for your answers. Dad has a metal stent but they put an external drain on when they put his stent in. They capped it off a few days after his stent was put in and around this time he got a very bad bacterial infection. Whilst Dad had this they put the drain back on and gave him IV antibiotics. After 3 days they did a cholangiogram and the dye was going around the ducts ok so they capped the drain off again and let Dad out of hospital. The plan was to have to drain took out completely yesterday but because his bile level had only come down 16 in 10 days they didn’t take it out as he now has to go for another Cholangiogram.
He is really down at the moment because he is no futher forward than when he was diagnosed in April and is desperate for chemo to start. Damn those bilirubin levels!!
Hi,
Could the count be her bilirubin level? Does your Mom look jaundiced? My Dads level is currently 294 but it was 419. I’m from UK so not sure if it’s measured different, Chemo can’t be given if level is over 50. Think normal level is below 30. Your Moms stent could be blocked or she may have the start of an infection, has the doctor given her any antibiotics?
Best wishes and good luck to your Mom for her Chemo
Thank you so much Rick, my mind seems to be overdrive lately! I’m hoping then that his bile ducts are still inflammed after all that they have been through with the stenting and bacterial infection he has had the past 2 weeks, he finished his antibiotics Wednesday. The worry is that ALKP have risen but I wonder if this could be because they have capped his drain off and the bile ducts are having to do more of the work? My husband has told me to try and stay positive because even though it hasn’t fallen alot the bilirubin as still come down. It’s the waiting and not knowing which is the hardest. His AST was 39 and his WBC was 9.7, and ALB 25.
Best wishes to you Rick and also Kris.
My Dad has extrahepatic CC, which means his tumour is in the bile duct outside the liver. Jaundice was his only symptom, it did clear when he had his first stent put in but when that one blocked his jaundice returned. This is the only symptom he has had.
Pam, I totally understand where you are coming from. My Dad was diagnoses in April after being jaundiced dince Febuary. He has still not started chemo. He developed a blocked stent 2 days before his chemo was due, that caused his bilirubin to be 75 which was too high for chemo, to cut a long story short during the stent replacement he too caught a bacterial infection that went into his blood stream, causing his bilirubin to go to 419. He spend a week in hospital and had to have IV antibiotics 3 times a day for 4 days. He is still very weak as he had other complications from the medication. He was supposed to be starting Chemo again next Friday but like you I am going to have to make a call to cancel it as there is no way his bilirubin levels will have fallen enough in time. We are back at the hospital this Friday to have his blood checked and hopefully his external drain took out (it is capped off at moment) If the blood isn’t right then the drain will be put back on and he will have a CT scan. It’s scary and I’m dreading going as we seem to be having problems all the time, we are always two steps back instead of one step forward.
I am sending best wishes and good luck your way, hopefully our next posts will both have more positive news.
Thanks Jemima,
I do have my Husband to talk to but as you know it’s not the same as your Mom. I am an only child but do have a close extended family. At the beginning of our journey we were told Dad only had months to live, the next day all the family were on my door step, so I know they are always there for me. I’m just scared to talk to someone as I feel once I start to the tears will keep flowing and never stop! plus I hate to be a burden. I’m the one that has researched CC and dealt with all the Doctors etc so I feel it’s my duty to stay strong for everyone.
Our stories are so similar and looking back I can’t believe where the months have gone, it doesn’t seem 5 mins since Dad turned yellow in Feb, told he’d got a few months to live in March and then told he could have chemo in April along with his stent. So yes we have progressed, dad shouldn’t be here if we had listened to the first hospital.
Thank you for your kind words, I hope your Mom is feeling well and that you all enjoy your holiday. Sending good luck for the Chemo too, fingers crossed my dad can start his in August too.
Best wishes to you all
Thanks Gavin,
Dad seems to be getting depressed, I think everything he’s been through has just hit him all at once. I’m scared he’s losing his fighting spirit. I asked if he thought he needed to speak to someone or maybe take antidepressants but he said no, so I don’t want to push him.
He lost his appetitie but has eaten more today, and he’s started drinking tomato juice which is supposed to help jaundice, and luckily he’s enjoying it. He is also taking ensure drinks. I am finding it hard to stay positive myself as he seems to have lost interest overnight in anything. My Mom said he keeps telling her he’s had enough and he’s fed up as he’s no further forward than when he was diagnosed in April. I try to stay positive in front of Mom and Dad but inside i’m falling apart. I’m dreading Friday, I really hope the stent is working but something is telling me it isn’t.
I have booked to go to a cottage in Wales Mon – Fri next week and feel guilty going there with my husband and son but my parents have told me to go. Hopefully everything will be ok and I can go away knowing things are slowly getting better. Dad is still jaundice but I suppose that colour won’t go till his bilirubin is normal, it was 310 last week.
Best wishes
Andrea
Thanks Kristin,
I will add this to my list! Dad doesn’t seem too well at the moment. He doesn’t have much appetite and he is sleeping more. He had a rough time with the change of stent, firstly picking up an bacterial infection and then becoming constipated from the IV antibiotics. They gave him tablets and movicol for this but Dad has a illestomy bag and I think the combination was a bit too strong and he has really suffered with his stomach. I’d read tomato juice was good for Jaundice, not only for the bile but the appetite so he has started to drink and enjoy this. We are back at the hospital Friday to have his blood took, fingers crossed his bilirubin has come down and he can have the drain took out, it is capped off at moment, if not they will put drain bag back on and have mentioned a CT scan as they gave him a cholangiogram (sp) and the dye was moving around the bile ducts as it should.
More waiting but hopefully it will be good news, we have got to have some soon, this rollercoaster has been dipping down way too long!
Dear Lainy.
I hope you both have a wonderful holiday, relaxing, making special memories and spending quality time with your family.
Thank you for all your kind words and I will definatley be taking on board your Lainy wisdom.
Lots of love and best wishes to you both. I look forward to reading your holiday report when you get back.
Hi Gavin,
He is feeling a bit better today, no more hiccups since he stopped taking the tablets for acid so it looks like this was the cause. He’s also stopped taking Movicol and is no longer constipated. Only problem now is he said his stomach feels bruised which I’m guessing is from the trapped wind and infection he has had. He’s started eating again, little and often which is a good sign.
Hopefully tomorrow his stomach will feel less bruised and he will feel better.
Mom is finding it hard as when he is yellow she said all she thinks of is Cancer and illness, he was looking so well before the stent blocked again, it must be hard for her but I don’t know what to do to make it better.
I booked them tickets christmas for The Sound of Music Musical, it’s 14th August so i’m hoping that Dad will be well enough to go as they were both looking forward to it.
Best wishes
Andrea
Hello Bigsister,
I would like to join the others and welcome you to this site. My Dad has CC and was diagnosed April afer having Jaundice since Feb. It is definatley a rollercoaster of emotions. Like you at the moment I am feeling angry, and keep asking why? My Dad was supposed to start chemo last month but his stent got blocked and his bilirubin was too high, so we are back to square one now. Everytime we get at step forward we seem to take 2 back.
I’m hoping to get the positive, fighting attitude back soon, but as you say it’s hard when you’re not in control and can’t fix or protect them.
Apart from an bacteria infection that Dad picked up laste week he has felt well throughout the last few months apart from the jaudice.
It is so good your sister has a positive fighting attitude as I beleive this helps, my Dad is very positive and the 2-3 months they gave him to live has come and gone. No one has an expiry date and hopefully your sister and my dad will prove the doctors wrong like so many on this wonderful site.
Best wishes to you and your sister.
