Search Results for 'gavin pdt'

Hi Kate,

Yes, my dad was on Ursodeoxycholic acid after he had his metal stent placed and was going through his PDT treatment. As to the success or not with the acid I could not say either way. He never had stent changes as his stent was metal and not the plastic one that needs changed often. Here is a link that may be of interest to you –

https://bnf.nice.org.uk/drug/ursodeoxycholic-acid.html

These are official NICE guidelines for use of this in the UK and as to whether it is approved by the FDA in the USA I am not sure. Maybe others in the USA will be able to chime in on this?

My best to you,

Gavin

PDT links –

https://www.macmillan.org.uk/information-and-support/treating/supportive-and-other-treatments/other-treatments/photodynamic-therapy.html

http://about-cancer.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/other/photodynamic-therapy-PDT

Gavin

Hi Positivity,

I am sorry to hear of the troubles that your mum is having with her stents and stuff that comes with it, and I hope that she can get some relief from that and the jaundice as well. I will try and answer some questions for you as best as I can.

My dad also had a stent placed for his jaundice upon diagnosis and it was a metal one. His CC was deemed inoperable at diagnosis so they went with the metal one and not the plastic one. As I understand it, at least back then, they went with the metal one as once it was in it would have ruled out any surgery and my dad was not a candidate for surgery anyway and the metal one is seen as permanent. It can last around a year or so before clogging can become an issue and with the plastic one it is around 3 months or so hence the need to keep replacing the plastic ones unfortunately. The metal ones can be cleaned out now I think and I know that someone here who’s dad had a metal one also had a small plastic one put in the end of it once it started clogging as well to help keep it clear. Andie it was.

I know that these stent replacements will be a pain in the backside for your mum, but they really are needed to keep the ducts free so that the bile can keep flowing out. The way to look at the jaundice IMO is that it will take time for it to build up and it takes time as well sometimes for it to go back down so that your mum will feel better again with itching, yellowing etc. And yes, pancreatitis can be an issue and must be watched out for.

PDT was what my dad also had for his treatment after diagnosis along with the metal stent being placed and I wrote about it a lot back in 2008 when he was going through it. My posts on this can be found on this link –

https://cholangiocarcinoma.org/db/search/gavin+pdt/

The above link has all the posts by me that have the word PDT in it. But the link below starts at page 19 of my posts on this subject and has a lot of quite detailed info about my dads treatment with PDT and that may be of more specific interest to you.

https://cholangiocarcinoma.org/db/search/gavin+pdt/page/19/

Guess if you are interested in PDT then start on the above link and work backwards from page 19! There is a lot of info in there but if you want to know more about it then please feel free to ask my anything on it and if I can help I will be more than happy to do so.

PDT is not new at all and I guess to be honest there have been mixed results with it over the years. Basically it involves injecting the patient with a substance (profirmer)  that after a few days will gather on the patients tumour. Then they go in with a laser once the substance has gathered on the tumour and try to zap it. It is painless but has side effects which I talk about a lot in my postings in the 2nd link I gave you. Basically again the patient becomes hyper sensitive to light of most types for about 6 weeks. The treatment may have changed somewhat since my dad had in 08 but that is the basics of what happens. It was seen for my dad as a palliative type of treatment and he went with that over the chemo due to his desire to have a better quality of life with the option of trying chemo later on.

I hope some of that is useful to you and let me know if I can help any more. Please let us know how things go with your mum with all of this.

Hugs,

Gavin

Hi Silentk,

Welcome to the site and my apologies for not replying to you up until now. Sorry to hear of your husbands diagnosis and also what you are going through also with everything. Having been my dads carer when he went through this and also having been my mums carer for 11 years now I can relate so much to what you are going through right now.

My dad experienced much of what your husband is going through right now and he also withdrew a lot from everyone for much of the time after his diganosis. This I would argue is quite common. Part of his treatment was in hospital in which he had to spend around a month or so in a room on his own and his doctor put him on Prozac during that time. He had light sensitivity due to the PDT so had to stay in the room for a month and no wonder the docs wanted to put him on Prozac. Is there anyone that could speak with your husband on a man to man basis I guess to try and get him to talk a bit about things and what this is doing to you?

Your social worker sounds like they are on the ball here so maybe they could do this? An AD for yourself also sounds right as you have a ton of stuff now to deal with. Please do not ever beat yourself up about what you are doing as you are doing everything that you can to help right now. No one has wrote a book about the right or proper way to do all of this and there is no manual as it were. You are doing great so do not waste energy worrying about that if you were.

As to future care. If you feel that you have reached or reach the point where you do not feel capable anymore of providing the care that your husband needs and deserves then please please get on the phone to the social worker or the hospice team and tell them immediately. Do NOT feel ashamed or bad about doing that as that is their job and what they are there to do. They are the professionals and we are not. We do our best and what we can but sometimes we need the help of the pro’s. No shame what so ever in that.

As to the ascites and the draining. The draining of the fluid from the abdomen will help your husband feel better once it has been drained but it will keep on coming back hence it will continue to need to be drained. But hopefully when it is drained he will feel a bit better after it. And the tiredness and wanting to sleep is also common and my dad went through that as well.

It does sound from what you say that you have a good team around you but remember not to be afraid to ask them for more help if need be. You should not go through this alone and fi it gets to the stage of in hospice care then they will be there to keep your husband as comfortable as possible. My dad went into hospice care and they took very very good care of him.

Now that you have joined us here you are definitely not alone in this, we are all here for you so please keep on coming back and we will help in what ever way we can. We don’t have all the answers but many of us have been or are going through what you are. And if you want to vent, shout or scream then feel free to do so as that often helps! Please keep us updated on everything.

Hugs,

Gavin

I forgot to mention the issues with light sensitivity and PDT treatment so thanks for mentioning them Marion. Welcome back by the way!

Tracy, please ensure that your mum does everything that she can to protect her eyes and skin from any direct light for a while after the treatments. Please do NOT take that issue lightly! I mention my dads experiences with the light etc in my postings here on the site.

Hugs to all,

Gavin

Hi Tracy,

Welcome to the site and I am sorry to hear about your mum. But I am glad that you have joined us all here as you will get tons of support and help from everyone here.

My dad had PDT back in 2008 after his diagnosis of non operable CC and that was the only treatment that he had. I wrote quite a bit on the site about his experiences with it back then and here is a link to my first post on the site where I mention PDT.

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1940

If that link does not work then please just go to the search forum function at the top of the page. Then type in my name, “Gavin PDT” PDT is not my surname by the way!! But if you do that then it will bring up 11 pages I think of my posts. Jump to page 11 and you will see my early posts on my dads experiences with PDT.

If that does not work then please let me know and I will see if I can bring up some more links to my postings etc.

My dads treatment with PDT was a one shot treatment and I think things have changed with it now so that it is able to be done more than one time which I think you say your mum may get if needed?

Please keep on coming back and let us know how things go for your mum with everything. We are here for you and feel free to ask questions and we will do what we can to help in answering them, we don’t bite!

My best to you and your mum,

Gavin

Hi there,

My dad had a metal stent inserted straight after his diagnosis of inoperable CC and that went along with the PDT as his treatment. He had the choice of PDT or chemo and he chose the PDT as he believed that it would give him a better quality of life for the time that he had left. His CC was deemed inoperable at diagnosis so that is why he was given the metal over the plastic stent.

The stent worked well for him in clearing up the jaundice and with that he started to feel a lot better. But this was always a paliative measure for him. In case you do not know, plastic stents last on average around 3 months or so before clogging can start to become and issue and metal ones around a year or so before clogging can start. Hopefully that will be of some use to you.

My best wishes to you and your mum,

Gavin

Hi Jan,

Apologies for the delay in getting back to you on this. Was really busy yesterday during the day and could not really write too much.

Yes you are right that this is a nightmare rollercoaster and to be honest I would say there is no right way to handle everything. What works for one person may not for the other etc. I guess that for my dad we were told straight from the off that his CC was inoperable and that treatments offered would only be palliative no matter what he decided to go for. He had to think about what he wanted with the time he had left and he chose the PDT as he felt it would give him a better chance of quality of life for that remaining time so maybe that helped him a lot with his thoughts and actions following diagnosis.

My mum had a pretty serious health condition as well, COPD and still does and perhaps that helped her deal with the news of my dad having a terminal illness. I would say that my mum accepted the news quite quickly that there was no cure for my dads CC and I did as well. Again, I would say that it comes down to each individual person and how they go about dealing with this sort of stuff but I so know that it is not easy to do no matter what way anyone handles it. No one is right or wrong in this but that doesn’t make it easier for you to deal with I know.

When my dad was diagnosed I needed to elarn everything that I could about CC and that is what led me here pretty quickly but again, I know that not everyone is like me in that aspect. My mum is certainly not like me and she didn’t want to know too much details or anything about all of this but she knew and never hid away from the fact that my dads CC was inoperable from diagnosis.

Perhaps your mums doctors at the hospice could take your dad aside sometime soon and have a heart to heart with him about everything and what is happening with your mum? Also, here on the site we have Dr Giles who maybe would be of help to you in the best way for you to handle this with your dad? If so he can be reached through this link –

http://cholangiocarcinoma.org/for-patients/ask-dr-giles/

I know he has helped many of the members here with dealing with a lot of the emotional side of things. I know that this is so hard for you Jan but trust me when I say this as I have been there that you are doing a great job in dealing with all of this so please do now knock yourself down with anything. You know we are all here for you as well. I hope some of that is helpful to you. And please do not feel guilty about anything Jan, you have nothing to feel guilty about at all.

Hugs,

Gavin

Hi Hazel,

Welcome to the site. Sorry that I missed your post. Sorry that you had to find us as well but glad that you have joined as you are so in the best place for support and help and you and your daughter will get a load of that here from everyone.

I too am from the UK, up here in Dundee and my dad was diagnosed and treated here in Dundee with PDT back in 2008. You said that your daughter sought a second opinion from the Christie in manchester, was it Prof Valle that she saw? If so then he is very very experienced in dealing with CC and indeed sits on our medical advisory board here at the CCF. He has also treated quite a few of the UK members here on the site.

Did you hear back from Helen again? I agree with what Marion says about Helen, she is a star!

Please keep on coming back here Hazel and keep us updated with everything. We are here for you and your daughter and we care.

My best wishes to you both,

Gavin

THis from 2013 Katia may be of interest to you –

Current Status of Photodynamic Therapy for Bile Duct Cancer.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3572349/

Glad to hear that you have talked with the professor in Bochum and that they have dealt with patients with CC. I know that when my dad had PDT in 08 it was a one time treatment, one zap as it were with the laser but as I understand it now patients can get more than one treatment with the laser and it sounds like things may have moved on with PDT from where they were back in 08.

Hugs,

Gavin

Hi Katia,

PDT is not used a lot but my dad had it as his treatment when he was diagnosed back in 2008. I wrote quite a lot about his treatment and experiences with it here on the site at the time and if you want to you can search for my first posting. I would post a link to them but for some reasons links to previous postings do not seem to work here.

But, to save you time searching through all my pages of posts just go to user search, Gavin, click on all posts link and that brings up all of my posts. Then click on page 333 which is the first page of my posts and that brings up my first posts. There are posts about PDT on that page and pages 332 and 331 as well I think.

Hope that some of the info in there will be of use to you and if you have any questions about my dads experiences etc just ask and I will do my best to answer them.

And no, your question is not a dumb one. No question ever is dumb! But the reason that you can not find much experiences of people talking about PDT for CC is that it is not widely used for it.

Hope that helps.

My best to you and your dad,

Gavin