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Please give my best wishes to Kris and tell her that I am thinking of her and that she is in my prayers.
Do you know if Kris has spoken to her doctors about the possibility of Photo Dynamic Therapy as being one of the treatment options available to her? My dad was treated with this when surgery was not an option for him and Kris has said before to me that this type of treatment interested her. This treatment seems to be undertaken more in Europe than in the USA so maybe it would be an option for Kris.
Wishing the two of you all the very very best.
Welcome to the site. Like Darla says, I am glad that you found the site, although I am sorry that you have to be here. First of all, many thanks for sharing and I am sure that you will find the same support and encouragement that I have found from the people here. This really is an excellent site and the people here have given me great comfort and support.
Like you, I am in the UK, I live in Dundee and my dad was diagnosed with inoperable CC last summer. Because of the location of the tumour, there was no hope of any surgery at all. Like you, we had never heard of bile duct cancer and went through the same emotions as you have gone through and thought, how can this be, how can my Dad be so unlucky. He is only 64 and his general health is good. Also like you, my Mum isn’t that well either, in fact her general health is not good, she has COPD and I am their carer. I do all the chores, shopping, cooking etc and am there for them all the time.
As far as my Dads treatment went, he had a metal stent inserted and still has to this day. He was jaundiced pretty badly, itching really badly and the stent helped with that. Since no curative treatment was possible, he was offered Photo Dynamic Therapy and the hope here is that this and the stent combined will help slow down the progression of the tumour. I know this wont cure him, we were told this a few times by his docs, but slowing it’s progression down seems to me like the next best thing. I dont know if your dads docs talked to you about it’s treatment, it seems far more common in the UK than in the US, this was the first thing my Dad was offered.
I agree with what Jan says about getting a second opinion. Also, does your Dad have a Macmillian nurse? My Dad was asked about this and he said he would like the Macmillan nurse to come see him when he got home from the hospital, he was there for the best part of 7 weeks. She is great and comes to see him when he needed it, first it was every week once a week or more if he wanted. She was able to talk to him about everything in a different way than a doctor could, and in his home and in a relaxed manner. She was also able to get new prescriptions sorted out oretty quickly if needed, as my Dad did for some pain meds that needed to be upped. Another service my Dad had to use a few times was the district nurses, do you have the phone number at hand for them for the 24 hour service?
Like you, Im not sure what the next step will be or what the future holds. My dad had his first CT scan lask week since undergoing the PDT therapy a few months ago and now we are just waiting for the results.
Don’t give up hope and don’t stop fighting. If there is anything that you want to ask me, then please do so.
I wish you and your Mum and Dad the very best and I will keep all of you in my thoughts and prayers.
Hi Hans and Kris,
I’m sorry to hear of this news. I wish you both all the very best in fighting this, as I am sure that you will do. I will keep you both in my thoughts and prayers and I hope for the very very best for the two of you.
Thinking of you both.
Thanks for your kind words and support, as always, it means so much to me.
Well Dad had his scan today, he did not get any info as to the results of it, but I would assume that the results would be sent to his specialist in Dundee. Hopefully we will get some news next week? I don’t know how long it takes for these scans to be looked at etc.
I think my Dad was pretty nervous about the whole thing, he never admitted as such to me that he was, but on the drive through to Perth, he did not stop talking, especially about stuff from his past. He’s not usually like this at all, he is not much of a talker. So I got the impression that he was a bit nervous and thinking about stuff etc.
So now I guess we just have to wait it out and see what happens next. Hopefully the wait will not be too long.
Thanks to you all.
Sorry to hear your latest news. You are such an inspiration to all of us, such strength you have and I hope you keep up the fight. Stay strong, stay positive and remember what you you told me a while ago, hope is in the air.
You and your family are always in my thoughts.
Wishing you all the best.
Welcome to the site. I can’t comment on any of the chemo drugs or treatments as my Dad has not undergone any of them. I am my Dad’s carer, he was diagnosed last year with inoperable CC so no surgery was possible. The first course of treatment he was offered was PDT therapy which he underwent late last summer. He also had a metal stent inserted and still does have that. If there is anything at all that I can help you with regarding this treatmemnt and how it went for my Dad then please just ask me.
I wish you all the very best.
GavinJanuary 22, 2009 at 10:10 pm in reply to: I am on a 5 hour hospital parole so I thought I would catch you up #25671
I’m keeping my fingers crossed for you and wishing you all the very very best. Stay strong, stay positive and I am keeping you in my thoughts and prayers.
All the best.
Mum and Dad are feeling quite a bit better today and they both got some sleep last night so that helps a lot. Dads cold is pretty much gone so his grumpiness levels are falling fast, which mum is extremely grateful for! Somehow I can’t picture you getting as grumpy as my dad does with a cold, or maybe it’s “man-flu” he gets, or thinks he gets!
All the best to you.
Here’s a link to the report Kris mentions from todays BBC news.
The machine will be at a private clinic in Harley Street in London. Hopefully once this program starts then NHS patients may be refered there and costs met by the NHS. The link also contains a piece of video from todays news bulletin.
Many thanks for all your kind words and support. Well Dad still has a cold, it’s not too bad now, just coughing sneezing etc but he is like a bear with a sore head when he gets a cold and is pretty gumpy with it. He’s always like that when he gets the cold, maybe thats a male thing!! I’m glad he doesn’t get them too much, but he is on the mend so that is good. Mum has been in bed since the 24th with a virus and has only really been up to go to the toilet. She is also a bit better but her mood is really low. It seems like that when one of them gets low and is in a bad mood, they drag the other down in a sort of spiral. Im hoping that once they get a bit better physically and we get into the new year that they will both perk up a bit. Anyway, dad got the date today for his CT scan, its the 24th of March. Quite a while away but hopefully then we will know how the PDT has worked and what/if happens next.
Here’s hoping 2009 will be better for you and your family and indeed for everyone. I hope you managed to get your mum a good doctor and some good treatment for her. I wish you all the best.
I hope you had a good Christmas and I wish you all the best for the new year. I hope it brings you everything that you want. Hugs coming back across the pond your way!
Good to hear from you. Thats good to hear that you and your family had a good Christmas. Christmas should be about spending time with the family so it brings a smile to my face to hear that you enjoyed yours with your family. Thats one of the things I liked most about Christmas, spending time with the family. I hope you will enjoy the visit of your brothers in January.
Hope is indeed always in the air. I like your talk of proving them all wrong, I like that thought very much.
I hope you are right re the seasonal depression state. Mum and Dad dont really like the cold, short days etc. This year it really has seemed to affect their moods for the worse. Being stuck in the flat 24/7 is not good for them, especially mum. Hopefully by March the worst of the cold weather will have gone and spring will bring the new highs of emotion you talk of. I am doing my best to be strong for them both and taking care of myself also as you say. I will email you this week if thats ok with you?
I hope the new year will bring better things for you also. The cold dark weather here really badly affects my mums breathing. So even if she wants to go out, it makes it so hard for her and it really takes it out of her. Dad has to wrap up really well in this weather, so I got him some nice hats and gloves for Christmas!
It sounds like we can both do with the warmer, lighter days and nights of the spring. Hopefully this will indeed lift your spirits and help ease the pain some. I told mum and dad that as soon as it gets warmer, I am taking them to Anstruther, a tiny fishing village on the east coast of Scotland, about 30 miles or so from here where there is a chippy that sells the best fish and chips in Scotland! I think a lot of small day trips here and there will do them the world of good after spending the winter indooors.
My dads specialist was indeed happy with his progress so far, and if he is happy then I am happy! I really like my dads doctor and feel that dad is in the best possible hands. Dads doctor is the big chief as it were at Ninewells and was also involved in the very early stages of trials of PDT in the UK. He is also a very nice guy and spends lots of time with patients and the families.
All the best once again for your MRI scan and hopefully the new year will bring you and Hans some good fortune. Enjoy the fireworks!
Thanks for your kind words. Up until now, I’d never really understood how the darkness and weather can affect people as it does. But after reading yours and others posts and seeing how it has hit my parents, I can see that now. Roll on the spring!
I am indeed hanging in there and hope you are doing the same.
Many thanks once again to you all and I wish all of you the very best.
Big hugs to you all!
Good luck with your MRI scan on the 30th, I will be keeping my fingers crossed for you! It’s good to hear that you look good and eyes, colour etc are normal.
I hope you and Hans enjoy the new year’s fireworks and celebrations and I wish you both all the very best for 2009.
Just a quick update. My dad was out this morning at the local shops and bumped into his friends wife. Well they spent quite a while talking and she was not at all hesitant in talking to my dad about his CC and everything. They didn’t talk about why dad’s friend didn’t talk to him the other week, but hopefully the next time they see each other they will be able to talk to one another and catch up etc. I’m sure she will go home and mention to her husband that she saw my dad. I know it made dad feel good to see someone he has known for years and to be able to talk as they had done for all these years. A good day.
Just thought I’d let you all know.
Sounds like you had some good times in Scotland on St Andrews night! All the foreign exchange students I’ve known who come to Scotland all seem to love the night just as much as you seem to have had. The haggis, tatties and neeps sure went down a treat, delicious!!! Although dad cant have a wee dram with it, but Irn-Bru is a good substitute! And yes dad loved it! And a great description of the meal you gave to Marion! The haggis used to be cooked in a sheeps stomach, but now it is more common to use an artificial casing. Wrap in tinfoil, simmer in water for 50 mins, slice the casing open and then let the aroma waft out!!! Lovely! Not long until Burns night and the next haggis supper!
Dad has his scan at Ninewells in Dundee on the 23rd of this month to see how the treatment has went so far, so obviously we are just sitting here waiting and keeping our fingers crossed. If there is anything at all that you want to know about my dads treatment, experiences etc then please just ask as I am more than happy to answer any questions. Email me direct if you do not want to ask here.
All the best.
Sorry to hear that the news from your dad’s tests were not as good as could have been. But as you say, at least you got some good news in that he shows no results of mets in other areas of his body.
Got no experience or knowledge of Xoleda so can’t comment on that, but I like what Cherbourg says reagarding starting it and seeing how it goes then stopping if it all becomes too much. I guess if you don’t start it then you will never know? How do you feel about that?
Wishing you and your parents the best.
Good to hear from you. Sounds to me as if you are being very pro active in trying to get your mum some good treatment. It’s good to see that you have a positive action plan and are trying to get specialists to see your mum. Keep it up!
Yep chemo was an option for my dad, and still is. He gets a CT scan on the 23rd to see how things are. We were told that chemo would be an option at any time as treatment, but if he had the chemo first, then he could not have the PDT treatment. The specialist recommended the PDT and the stent first, then if neccesary chemo. Dad agreed with this as he wanted to try all possible treatments so jumping straight into chemo would have ruled out PDT. I will keep you up to date on how the treatment is going and hope you will keep us up to date with what is happening to your mum.
The best to you and your mum.