Search Results for 'gavin pdt'

Hi Ellen,

Welcome to the site. I’m sorry to hear about your dad and that you had to find us all here, but I am glad that you have joined us as you will get tons of support and help from all of us. I came here in 2008 after my dad was diagnosed and it was the best thing that I could have done.

Please don’t worry about how the website works, just post away as much as you want! And if you have any questions at all then just ask and we will all try and help if we can. My dads CC was also inoperable and he had PDT as his treatment. Please let us know how your dads biopsy goes and what treatment his docs think he should have, and remember that we are all here for you.

My best wishes to you and your dad,

Gavin

HI Brian,

WElcome to the site. Sorry that you had to find us all and I am sorry also to hear about your Uncle. You have done the right thing in coming here and joining us all as you will get a load of support from everyone here. I came here back in 2008 when my dad was diagnosed and everyone helped me so much and I know they will all do the same for you. My dads CC was also deemed inoperable from diagnosis, too close to the portal vein and he had PDT as his treatment.

You will also find out a load of information here and please feel free to ask as many questions as you have. We also have 2 other specific boards that will be of interest to you, a chemo board and also a radiation board and you will find a lot of great posts there from our members. That is great to hear that your uncle has a positive attitude as this will help carry him a long way. I hope you will keep coming back as we know what you are going through right now and how you feel.

My best wishes to you and your uncle,

Gavin

Hi Janine,

Welcome to the site. Sorry to hear about your mum and I am sorry also that you had to find us all. But I am glad that you have joined us here as you will get a ton of support from everyone here. Here is a link that may be of use to you –

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126

It is the thread that Lainy talks of that was started by the members here who have shared their personal experiences of doctors and treatment centres that they were seen/treated at. And this may help as well, it is a list of major cancer centres in the USA.

http://www.cholangiocarcinoma.org/majorcancercenters.htm

My dad never had chemo, he had PDT as his treatment and he also had a metal stent inserted and this helped so much with his jaundice.

Please keep coming back here and let us know how your mum is doing. And feel free to ask a load of questions and we will help if we can.

My best wishes to you and your mum,

Gavin

Hi Malc,

Welcome to the site, and thank you very much for sharing your experiences with your whipple op at Leeds, I know that your experiences will be useful to many of our members here. We have quite a few members here in the UK, and I am in Scotland and my dad was treated at Ninewells here in Dundee with PDT.

I hope that you will keep coming back here and sharing with everyone and I do look forward to reading more of your posts.

Best wishes,

Gavin

Hi Maria,

I’m glad that you are feeling so much stronger about your upcoming meeting with “scary” doctor! But just remember that he is your doctor there to help you, so please don’t be scared of him. And from reading the posts here, you now know that you are not the only person in the world fighting CC and that there are other alternatives out there besides the chemo combo that you were on. Strength in numbers with all of our members here helped me so much when my dad was going through his fight and also finding out as much as I could about CC and what can be done also helped me a lot. The better informed you are the better the decisions you can make.

My dad never had chemo so I can’t talk about what he went through, he had PDT as his treatment. Did your onc talk with you about the possibility of trying the Gem/Cis chemo combo? Or indeed any other chemo combinations? If you read the chemo board here you will find a lot of posts from our members sharing their experiences of chemo’s of various types and combinations. Also, did the doctor mention radiation of any type?

And I can’t remember whether or not you talked about surgery of any type being a possibility? I’m not sure if anyone here has tried Yttrium-90 or not so perhaps you could use the search function here on the site to see if any discussion come up. I did a quick google search and came up with these links, hopefully some of them will be of use to you.

http://www.google.co.uk/#sclient=psy&hl=en&safe=off&site=&source=hp&q=Yttrium-90+cholangiocarcinoma&aq=f&aqi=&aql=&oq=&pbx=1&fp=975ed894378411e6

I know that others will be along soon to offer their thoughts and experiences and hopefully you will be able to compile a long list of medications or treatments to discuss with scary doctor!

My best wishes to you,

Gavin

Hi Noreen,

Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear about your uncle. But I am glad that you joined us all as you will get a load fo support and help from us all. Whem my dads CC was diagnosed, it was also classed as inoperable due to the location of his tumour, too close to the portal artery so that ruled out surgery and he couldn’t have radiation either. My dad had a choice of treatments, PDT or chemo and he went with the PDT and hoped to follow that up with chemo down the line but couldn’t as it turned out.

I agree with Lainy about seeking a further opinion should your uncle want to do this and I am sure that others here will be able to offer experiences of various doctors/treatment centres near you. I can’t help with this as I am from Scotland.

Please let us know how your uncle does over the coming days and weeks and please keep coming back here. And also, if you have any questions at all then please ask away and we will all help if we can.

My best wishes to you and your uncle,

Gavin

Hi Stacey,

I hope that your dads meeting with his onc next week will give you some good news. My dad was also turned down for chemo. As far as his treatment went, he had a metal stent inserted and had PDT with a view to doing chemo possibly at a later date. But as things turned out, my dad was not a candidate for chemo. When my dad went to see his onc, his jaundice had came back and the onc said that he should not do chemo as he was having trouble again with his duct getting clogged. We were told that if my dad had chemo, then he would not be able to pass this out of his body afterwards.

I so hope that your dad gets some good news next week.

Best wishes to you and your dad,

Gavin

Hi Simon,

Welcome to the site. I am sorry that you had to find us, but thank you so much for sharing your wife’s story with us all here. You are right when you say that everyone is different and the no one can say for definite how things will pan out. I am in the UK as well, my dad was diagnosed and treated in Dundee at Ninewells, he had PDT. The Christie in Manchester has an excellet reputation for the work that they do there and I am glad that your wife is under their care.

My best wishes to you and your wife,

Gavin

Hi Lisa,

Welcome to the site. I am sorry that you had to find us all and I am sorry to hear Bill’s diagnosis. And yes, I can so understand your feelings right now as I felt like that when my dad was diagnosed with his inoperable CC. And I am happy to hear you say that you and Bill are now getting ready to fight back and that Bill is strong willed. A strong attitude and being up for the fight will help here and I know that once you start fighting back then you will start to feel a bit better. My dad went through exactly this once he got his treatment plan in place, metal stent inserted and PDT.

And we will all be here for you and you will get a load of support from us all, and please feel free to ask any questions and we will help if we can. Yes the burping is a common issue and my dad used to hav bouts of this. He never really found anything that seemed to help but I recall someone here lately trying something and posting about it and they said it seemed to work. The search function should help if finding this out. Nausea, was Bill given anything for this? And for the feeling of being full, perhaps trying foods that are easier to break down such as minced beef, soup etc. My dad had issues with that also and that is what his specialist said to try.

Keep reading, keep posting and you will become the best advocate that you can for Bill.

My best wishes to you both,

Gavin

Hi Molly,

Welcome to the site. I’m sorry to hear about your mum but I am glad that you have joined us all here as you will get a load of support and help from us all. And please feel free to ask any questions that you will have and we will help if we can.

I know how you feel, I felt the same when my dads CC was diagnosed. His CC was deemed inoperable and he also had a metal stent inserted and had PDT as his treatment. My dad also had the itching and it can take a few days for the stent to start working as it should and to get the bile flowing again. Once this happens, hopefully your mums itching will stop.

I do think that it would be good for your mum to get a second opinion, or even a third one. Especially so when you say that your mums doctors don’t seem to be up to speed on CC. Did your mum ask them how experienced they were in treating patients with CC? Hopefully Gerry (hollandg) will come along at some point and can offer more on doctors in Ireland.

My best wishes to you and your mum,

Gavin

Hi Janet,

Sorry to hear that you were not able to attend the meeting the other day with your mums onc. I know you say that the onc said that PDT was not used in treating CC, but what else did the onc say about what they could do for your mum?

I think that PDT was more widely tried as a palliative measure here in the UK and Europe more so than in North America. From memory, I think I have only read of a few people who have PDT in the US/Canada and I think that they were part of trials. Indeed, here in the UK, PDT is not given as a standard treatment to CC patients although some specialist centres do still offer it. Back in 2008 when my dad was diagnosed, there were I think 6 NHS hospitals in the UK that offered this treatment as part of a trial for treating CC, but I understand now that that trial has stopped.

As I said to you in another thread, no one here can tell you if your mum would be a candidate for this or if it would work if she were to receive it. Perhaps you could mention it to the next onc that you see and see what they say about it. And I do hope that you can manage to speed up your mums app with that next onc.

My best wishes to you and your mum,

Gavin

Hi Janet,

Here are a couple of posts I did a while ago that go into more detail about my dads PDT experiences. If I can help in any way further then please just ask and I will help if I can.

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

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2089

My best to you and your mum,

Gavin

Hi Ashley,

Welcome to the site. Sorry that you had to find us, but I am glad that you have joined us. And it is great to hear that your mum is having success with her chemo so far and long may this continue. I will keep my fingers crossed that your mums MRI in December shows further success.

I am sure that others will be along soon that will be able to share with you their experiences of chemo. My dad never had chemo so I can’t talk about his experiences with that, he had PDT as his treatment. I know what you mean about hating the unknown and what the future may or may not hold, we all feel like that. But what I would say to you is please try and focus on the now and being there for your mum right now. And keep coming back here as we will all be here for you.

My best wishes to you and your mum,

Gavin

Hi Janet,

Were you able to speak with your mums doctor about the possibility of PDT for your mum? My dad had this as Patty says, and Patty is also right about the side effects of PDT being far less than that of chemo. PDT does have one large side effect in that a persons skin becomes extremely sensitive to direct sunlight for between 6-8 weeks, although this can be easily overcome with clothing and dark glasses when outside.

My best wishes to you and your mum,

Gavin

What about photodynamic therapy (PDT)? It does not have the side effects that chemo has. If you use the search function you will find posts about it. Gavin’s father had this treatment.

Patty