Introduction My brother’s fight with Cholangiocarcinoma
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Hi. Lorraine here.
Just to give you an update. We are quite worried just now. Donnie’s bilirubin has gone up to 451 and the drain seems to be not working. Only a little liquid coming out and the drain is uncomfortable at the bit that comes out of the body. Donnie does not know if the tumour has grown. He has asked for a scan but the doctors have said that it is too risky and that the iodine could cause renal failure due to the jaundice. They can not tell us the percentage of risk involved. It has been about 6 months since he had a scan.In addition, the doctors are saying they can not do anything else. They will not consider replacing the drain or do not even seem prepared to check if the catheter is ok. Donnie has had this drain for about 9 months. Do catheters not need replaced after a while? Does anybody know anything else about scans and how risky they are with a bilirubin level so high. We just feel we have reached a brick wall and Donnie feels that the hospital has rubbed their hands of him. He gets support from Marie Curie and the district nurses who come twice a week to flush the drain. He still has a certain quality of life but as the jaundice gets worst he feels more tired and lethargic. One good thing is he is on constant antibiotics and this is helping to fight off infections and he has not been admitted to hospital in 6 months. Any advice would be most welcome. Regards to you all from Donnie and I.
LorraineHi Donnie,
Great to hear from you again! No tumour growth, now that is positive I would argue. THe biliary bag not so good but as you say, it gives you quality of life and I would argue that that is so very important indeed! As to things being up to your body now, well you are Scottish and we are a very stubborn lot are we not. When someone or something tells us no or do this or that, or don’t do this or that and the next thing we usually say is aye, nae bother pal. Of course if you come from Dundee it is aye, nae bathir pal!
So you keep on not doing what the internet says Donnie, nae bother at all!
Pays not to listen to the stats doesn’t it as they are just numbers and can be interpreted many ways, made up many ways etc and since many of them were collated things have moved on much.Keeping the cancer in check, we like that lots! Hope that the change in antibiotics works well for you and please let us know how that goes. You know that we are all here for you Donnie and rooting loads for you as we.. Say hi to Lorraine from us as well and I so look forward to hearing from you and Lorraine again as soon as possible.
My best to you Donnie,
Gavin
Dear Donnie, I just want to say that for someone who is not supposed to be here we are certainly glad that you are. I have found that most of us really pull on strength we never knew existed to get through many things in health and life. Keep on keeping on and I will leave the rest up to Gavin! Thanks for the good update.
A Liittle update on how things are doing . On the positive side the tumour hasn’t grown or spread but still problems with my digestive system , I now have the biliary bag which is helping to keep the bilirubin down , now currently at 244 , still too high but gives me some quality of life. No more can be done surgically, it’s up to my body now! The white blood cell jailers are keeping the cancer in check ! Currently on permanent antibiotics to avoid infection , to be changed next week . If you go by the internet I shouldn’t be here now but says a lot for my body and quality of care . Keep up the good work and strong ear Gavin and I’ll be in touch in regular intervals should there be developments Thoughts Donnie
Hi Donnie,
Great to hear from you! Thanks for the update on everything and Fleetwood Mac tickets, nice! I know that you will enjoy that and it is something to look forward to as well.
So tumour is stable then, glad to hear that Donnie. Keeping it in jail, lol, love that idea! No breaking out of Barlinnie allowed and solitary confinement for the tumour please!
I hear what you say about the bag and can understand your initial reaction to it, totally understandable. But like Lainy says, you can have a life with it as well and I hope that the issues with it start settling down pretty quickly. My mum was the same when she went on home oxygen 16 hours a day, was so not into the idea of that at all but she got used to it pretty quickly once she realised that it was benefiting her with her quality of life etc.
Don’t give up on the idea either Donnie of the bili levels coming down in time. They take time to go up and will take time to drop again and none of us knows what lies around the corner do we. Great to hear from you Donnie and looking forward to hearing from you again soon.
My best to you and Lorraine,
Gavin
Dear Donnie, my husband had an external drainage bag, worked and golfed and he was 73 at the time. I would think the Billie will come down more now with the stents. The yellow skin color takes a little longer. You CAN have a life with the bag. Just give it a name and pretend it is your best friend! BTW, Teddy used to pin his to his T shirts as he felt it was more comfortable that way.
Stable is good and we will take it. Comfort is the most important. Keep up the good work!Hi, Gavin, how are u doing? just contacting u on latest update . The tumour is still the same ,hasnt grown or spread, that’s 15 months now, stats say only 5 per cent survive after 1 year! . Had constant stent blockages , in and out of hospital so a different approach . After a lot of discussion we decided on the PTC procedure to bring bilirubin levels down which has been a success,now at 166 . Had a few issues with the drainage bag but hopefully will settle down and not give me too much discomfort . At first when I heard drainage bag mentioned, I didn’t want to know but now I’ve come round and if it gives me reasonable quality of life I’ll be quite happy! So now back to keeping an eye on the bilirubin level and hopefully it will stay at a manageable level. Probably I’m going to stay partially jaundiced for the rest of my life with associated side effects as I can’t imagine my bilirubin coming down to a level were I can get therapy . Hopefully my body will keep the tumour in jail and no escapes will be attempted! keep up the great work Gavin and team and I’ll be in touch Donnie PS treated myself to Fleetwood Mac tickets in July really looking forward to it
Hi Lorraine,
Brilliant news about Donnie, you just made my night!!! Sorry I didn’t see your post last night, not been on the site since yesterday. Well chuffed for you and Donnie and so glad to hear that the drain seems to be working right now as it should! Long may that continue and tell Donnie that my fingers are crossed for him and that I will open a tin of Irn Bru to celebrate for him! Tell him too that we are asking for him and looking forward to seeing him back here on the site.
Hugs,
Gavin
Lorraine….happy to hear that everything is working just as it should. Donny has the relief he needs. Hoping the pain is tolerable and addressed with medication. Soon he will be able to play his guitar.
Hugs,
MarionHi there,
Thaks Marion and Gavin for your messages. Just to let you know Donnie got the drain fitted last Thursday in Glasgow and the op seems a success although it is early days. He is still in hospital and has some pain. However, the bile is now flowing out of him. I think he is on bag 13. His bilirubin levels are dropping slowly but surely. Such a relief!
Lorraine
Lorraine….I would like to add that patient comfort is of most concern. I would discuss with the physicians the pro- and con’s of biliary drainage (in detail.)
Hugs,
MarionHi Lorraine,
Sorry for not getting back to you sooner, have been away from the pc quite a bit these last few days, got a lot on here right now. This is a tough one and to be honest, my dad never had much experience with drains so I can’t really offer too much insight here. He had a drain in just after his diagnosis and that worked well for him but that was the only one he had. I do hope that others will be able to chime in and share some other personal experiences here. I know that Lainy is offline just now for a bit as she has just had surgery for something else and I don’t know when she will be back online.
I know that this is a tough choice for you and Donnie to make as to go with Glasgow or wait until Edinburgh app to see what they say. The Edinburgh app is a week tomorrow is it not? And do you think that Donnie will feel up to traveling then? If he is not up for it then perhaps it would be best to go with Glasgow with the liasing from Edinburgh? Just thiking out loud here. Also, if the consultant in Glasgow believes they have as much experience as Edinburgh in this procedure then again, maybe that is another reason to go with them and try this sooner rather than later?
I realise that all of this is so scary for you both and there are no easy answers I would say. But if it was me then I would prob go with Glasgow now as that would be quicker and I assume that they could get on with this this week? I wish I could offer more insight and help right now Lorraine. Please say hi to Donnie from us and tell him that we are asking after him and that loads of positive thoughts are coming from my side of the coast to yours.
My best to you and Donnie,
Gavin
Hi,
Sorry it has been a while since I have been in touch. Looking for a bit of advice. Donnie is back in hospital in Glasgow. His bilirubin spiked again to 365. One of the stents is blocked again. This time the consultant in Glasgow has said that it can not be unblocked through endoscopy due the position of the blockage. Previously we had been told in Glasgow that a drain was not a possibility and they seemed to be saying to us that they were coming to the end of the road of what they could do. When we went to Edinburgh for a second opinion they felt that drainage was an option. They said that they would liaise with Glasgow to get more up to date information. Donnie is due back in Edinburgh a week on Tuesday to get a more detailed second opinion. Glasgow are now discussing the possibility of a drain but have said that the risks of serious complications are high. We are not sure what to do. The choice seems to be do nothing and the bilirubin will keep rising or try the drain which may or may not work or cause potentially serious complications. Glasgow say they can not give us an indication of the level of risk. It is a holiday weekend here so we need to wait until Tuesday to find out more. Has anybody had experience of drains.? I know Lainy you said that your husband had one and it seemed to be okay. Another thing I am not sure of is whether Donnie can wait for his appointment in Edinburgh before making a decision and whether it would be better for Edinburgh to carry out the procedure given that they are the specialists in this area. Our consultant in Glasgow has said that it can get complicated when you are working between 2 hospitals and the patient can fall between the gap. He feels that they have as much expertise in carrying out this type of procedure as Edinburgh. It is all so scary and confusing. Donnie asked me to contact you to see if you can offer any advice. He said to say hi. He is trying to stay positive but it is hard. He went out and bought an electric guitar recently and has been trying to maintain as normal a life as possible.
Lorraine xx
Hi Donnie,
Great to hear from you! Real glad that you are off to Edinburgh today and hope that you get some good news whilst there. Fingers are crossed for you on this! Sorry to hear about your hospital stay, but that is great that they found the problem and sorted it for you. Hope that these bili numbers keep dropping as well now.
Yes you certainly are fighting this with everything that you have and I’m loving this fighting attitude that you have and the whole not taking no for an answer, good on you! Please let us know how things go today and hoping that the yellow tinge fades away too!
My best to you and Lorraine,
Gavin
Hi, Donnie. My husband had internal bile stents and also an external bile stent with bag. The internal stents need to be changed every 6 weeks to 3 months whether or not there is an external bag as well. What happened to your stent is just one of those irritable things and they hopefully will be OK now. IF you want an external bag it really is not a problem, I used to change them for Teddy. My only complaint was bile has a vile odor and I was the one who was happy when he was done with those! Good luck.
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