Search Results for 'gavin pdt'

Hi Irene,

I am sorry to hear that your scans yesterday did not show better results for you and that you are having these other symptoms that you talk of.

When my dad was diagnosed with his CC, we were told that it was similar to yours in that it was wrapped around the portal vein so that ruled out surgery or radiation for my dad. We had discussions with my dads doctor about treatment and the quailty of life issue you bring up was part of these discussions. My dads doctor wanted dad to have PDT and perhaps try chemo at a later date. Quality of life was important for dad and his doctor thought that PDT would be much easier on his body as it is a far less invasive treatment than chemo is.

I know that PDT is not that common a treatment for CC in the USA, but perhaps it is something that you could speak with your doctors about. My dad never had any chemo so I can’t talk about that. I wish there was something more that I could say that might help you. I don’t know if my dads experiences will help you or not, but I just wanted to share them with you.

My best wishes to you,

Gavin

Hi Jeff,

Great news about Marc being able to start his chemo today! I hope it goes well for Marc. I know that we all felt a lot better when dad started his PDT treatment back in 08 and I hope that you and Marc are feeling a bit better now that the treatment has started. Yes I know what you mean about it feeling a bit strange to be happy about starting treatment. But by starting any type of treatment means that you are fighting back!

I hope you all have a great meal tonight and have a great time. I’m sure that a night out will be good for you all! So eat lots, have a load of laughs and enjoy the night.

My best wishes to you and Marc,

Gavin

Hi Kate,

Here’s my first post on the website in which I talk about my dads experiences with PDT –

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

I hope some of that is helpful in explaining what he went through with that treatment. If there is anything specific that I can help with then please just ask and I will help if I can.

Best wishes,

Gavin

Hi Kate,

Welcome to the site, although I am sorry that you have to be here. I am also in the UK, in Dundee and I was my dads carer during his fight with CC. Please come back here often as you will get a load of support from us all. And I am sure that you will get answers from someone to the questions that you will have.

My dads CC was inoperable and his treatment was PDT with the possibility of chemo at some point. He also had a metal stent inserted. Perhaps you could speak with Prof Lodge about the possibility of PDT as a treatment for your dad at some point. My dad had his PDT at Ninewells in Dundee, but I think they are doing the same treatment as part of a trial in London, Nottingham, Bristol, Liverpool, Wincester, Basigstoke and the North Manchester General. I am sure that Prof Lodge will know more about this.

I hadn’t heard of the Bilcap trial until today and I’m assuming that this is the trial that your dad is on,

http://www.cancerhelp.org.uk/trials/a-trial-looking-at-capecitabine-after-surgery-for-cancer-of-the-bile-duct-or-gallbladder

As things turned out, my dad was not suitable for chemo but from speaking with his oncologist at the time, if they had done chemo then it would have been the Gem/Cis combination. But I do not know if that is now the standard treatment in the UK, perhaps someone else will know. As to Cyberknife, I think that there is only one facility in the UK that does this procedure, in Harley Street in London. I remember seeing something on the news here in the UK about it last year and I think I posted the link to the piece on the website so perhaps you could use the search function here to look for it.

My best wishes to you and your dad,

Gavin

Hi Kathy,

Welcome to the site although, I am sorry that you have to be here and thank you so much for sharing your story with us all. And you most definitely are not a wimp!

My dad was diagnosed in 2008 with all the symptoms that you mention, jaundice, yellowing of the eyes and skin and the itching. His CC was deemed inoperable and his treatment was PDT. You have a good attitude and I am glad to hear that you are feeling good, feeling good is something to enjoy.

Please come back often as you will get a load of support from us all. And feel free to ask any and all questions that you might have as I know that you will get answers from someone.

Best wishes,

Gavin

Hi Marianne,

I too am sorry to hear this news. Have you spoken with your dads doctors about other treatments such as chemo, radiation or PDT? I know that other will be along soon with some suggestions.

My best wishes to you and your dad,

Gavin

Hi Doug,

Welcome to the site, although I am sorry that you have to be here. I have no knowledge of glass bead radiation, so I can’t help you with this. But I know that someone will be along soon who can help you with this question. In the meantime, there is a search function at the top of the page which you can use and I am sure that you will find some posts there that will help you.

My dad was diagnosed in summer 2008 and his CC was inoperable. His doctors ruled out radiation from the start with the possibility of trying chemo later. His treatment was Photodynamic therapy PDT with a metal stent inserted also. I know others here have had other treatments and I know that they will be along soon to share their knowledge and experiences with you. I hope that you will come back often Doug as you will get loads of support and help from us all.

My best wishes to you and Margie,

Gavin

Hi Mayra,

Welcome to the site, although I am so sorry that you have to be here. Please come back often and ask any and all questions that you have as you will get so much support from us all. And I know that there are people here who will be able to answer your questions. Although I cant help you with your chemo questions, I know others will be along soon that can help.

My dad’s CC was deemed inoperable and his treatment was PDT with a metal stent inserted. He had no chemo so I can’t share his experiences of that with you. If you look at the top of the page here, you can use the search forum function to look for posts regarding the chemo treatments you mention and you will find a lot of posts that may help you.

I hope that Eddie’s SirsPheres treatment goes well in March and I will keep you all in my close thoughts.

My best wishes to you and your family,

Gavin

Hi Jeff,

My dad’s treatment was PDT so if you want to know more about his experiences with it then you can use the search function here to look for some of my earlier posts regarding it. Or if you prefer, please feel free to ask me anything and if there is anything I can do to help then I will.

Best wishes,

Gavin

Hi Noll,

Welcome to the site, although I am sorry that you have to be here. Please come back often, ask any and all questions that you will have and I know that you will get a load of support and help from us all.

I can’t help you specifically with your question regarding bile salts and surgery as my dad never had surgery, but I am sure that someone will be along soon that can help you with this. My dad’s CC was inoperable and he had PDT as his treatment with a metal stent also inserted. He used to get twinges of pain around the stent area and also in the back, especially so just after it was put in place. He started off on paracetamol then moved pretty quickly onto Solpadol 3 times a day. This seemed to work for him pretty much but he still got the occasional twinge.

My dad also had problems with digestion of food and his specialist advised him to eat small amounts of food but eat more often. So instead of 3 meals a day, your mum eating 6 small meals each day sounds good. Also eating foods that are easier to digest was what we were advised to do, such as mince and soup etc.

My best wishes to you and your mum,

Gavin

Susanne,

Welcome to the site. I am so sorry to hear of the loss of your dad. I lost my dad to CC in December of last year so I know the pain that you are feeling right now. I miss my dad so much and I know that you do so as well. Not a day goes by that I don’t think of him and words can’t describe how much I miss him.

My dad was diagnosed in summer 2008. He was 64 and in good general health and showed no symptoms of CC or had any pain. Then the jaundice appeared, yellowing of the eyes and the itching. He was admitted to hospital and 3 weeks or so later he was diagnosed with inoperable CC. He had PDT as his treatment in an attempt to stop the spread of the tumour. No chemo, radiation or surgery as dad was not able to do them. Like you, I was astonished about all of this. One week dad seemed okay, then a few weeks later we get this news.

I wish there was something I could say to help you Susanne, but all I can say right now is that I know how you feel. I hope that will come back here again as we know how you feel and what you are going through, and I know that you will get so much help and support from us all.

My thoughts are with you and your family,

Gavin

Hi Cinnamin,

Thank you for sharing this news with us all. That is quite some story that you tell and I am glad to hear that your dads surgery went well, good stuff! I hope that your dad makes a great recovery and I wish him every success with this.

When my dad was in the hospital, his doctor told him the same thing that Janet mentions and that it is hard to sleep in hospital. He spent over 3 weeks on the ward and hardly got any sleep, then when he was transferred to a private room which he needed due to his PDT treatment, he still didn’t get much sleep.

Here’s hoping for a speedy recovery for your dad and my best wishes to you both,

Gavin

Hi Gettingby,

Welcome to the site and thank you for sharing your thoughts with us all. I guess that the wisdom that we have all gained regarding CC has indeed been done the hard way! As to the depression, my dad was given prozac when he was in hospital after his diagnosis, he spent the best part of 7 weeks in the hospital and about 3 weeks was spent in a room on his own. His treatment was PDT and that meant that his skin was extremely sensitive to light after the treatment so he could only leave the room if all the lights on the ward were out.

And yes, having close friends around a lot always helps lift someones mood, as does having some good laughs with friends.

My best wishes to you,

Gavin

Hi Lu,

Thanks for the update on your dad. I can’t help you with your questions on what to expect on radiation and chemo as my dad never had either of these treatments. Radiation was ruled out from the start and dads specialist wanted to go straight for PDT with the possibilty of chemo at a later date. He also said that the side effects of PDT were far less than that of chemo and quality of life was a big issue for dad at that point. If your dad does do the PDT, do you know where it will be done? If you want to know anything specific about my dads experiences with PDT then please just ask me and I will help if I can.

My best wishes to you, Jen and your Dad,

Gavin