Search Results for 'gavin pdt'

Hi Varun,

No trouble at all, I hope the links and stuff will be of some use to you.

As to how PDT worked for my dad, well first off, the specialist who carried out the procedure said it went as best as it could have possibly have gone. The hope was that the PDT would shrink the tumour as best as it could, but that it would not cure my dad. You ask if it helped, and I would say that it did in that it bought my dad more time. And from further meetings with his specialist and the gp after he had his PDT, I got the impression from them that they felt that dad lived longer than what they thought he might do.

Were there any complications you ask? And to that I would say no. We knew what the side effects would be, the sensitivity to direct light on the skin and the eyes and my dad went through all of that. Lasted about 8-10 weeks overall. And this point is something that I can not stress enough. Anyone who has PDT will be VERY VERY sensitive to light, both to their eyes and skin. I really can not emphasise this point enough. My dad had to cover up his skin and eyes for quite some time when he went outside. Even exposure to to a small amount of sun, not very strong would lead to him burning.

I hope that some of that is useful to you Varun, if I can help in any other way please just ask.

Best wishes,

Gavin

Varun,

This is the specialist that did my dad’s PDT for him and I understand that he was involved in a lot of the research and trials into PDT for CC patients in the UK.

http://www.dundee.ac.uk/surgery/onestaff2.php?ID=60

Best wishes,

Gavin

Hi Merilee,

Welcome to the site although I am sorry that you have to be here and sorry to hear about you dad’s diagnosis. I came here back in summer 2008 when my dad was diagnosed and we felt the same as you and your family are feeling now. Please keep coming back here as you will get so much support and help from us all.

My dad was similar to yours in that he showed no symptoms until the jaundice appeared and he was admitted to hospital for all the tests, MRI, CT scan etc and they found he had CC. He had a metal stent inserted and had PDT as his treatment. I hope that you manage to get your dad a second opinion from someone who has seen a lot of CC patients and is experienced in dealing with this. I can’t offer any help here as I live in Scotland, but I am sure that others will be able to help.

Please feel free to ask any and all questions and I am certain that you will get answers. There are no wrong questions to ask and the more you know about CC the better.

My best wishes to you and your dad,

Gavin

Hi Dianne,

Welcome to the site although I am sorry that you have to be here. This is the best place to come to for support, help and information, so I hope that you keep coming back as you will find all of this with us. Please feel free to ask any and all questins that you might have and I am certain that someone will be able to help.

And thank you for sharing your story with us all. I came here back in 2008 when my dad was diagnosed with inoperable CC and his treatment was PDT. He also was jaundiced pretty badly and that was his first symptom that showed. He had a metal stent inserted and that certainly helped with his jaundice.

And yes venting here certainly does help!!!

My best wishes to you and your dad,

Gavin

Hi Kate,

In my dads case with PDT, the stent was inserted to relieve the jaundice and to keep the bile flowing and the PDT was used to try and shrink the tumour or to at least slow down the growth of it. He did spend 3 weeks in a room with the curtains and door closed, but he did not have to be fully covered when he was in the room. After 3 weeks he left the room and the hospital, and when he was outside, he did have to be fully covered and this lasted for about another month or so. After this point, about 2 months or so, there were no side effects at all from the PDT.

One of the reasons that Dad opted for PDT was that once the initial side effects wore off then he could try and have as decent a quality of life as possible and that was very important to him. We discussed this with his specialist and he felt that PDT would give him this quality of life compared to having to have ongoing chemo sessions a lot and what the side effects of that would involve with every session.

As I understand it, the use of PDT as a treatment for CC is still quite new and a lot more work and trials still need to be carried out. I know that doctors here in Dundee have had excellent results in treating certain types of skin cancers quickly and relatively pain free and that this treatment is now to be rolled out throught the UK for treating this type of skin cancer. I hope the research and trials will continue with using PDT for treating CC patients when suitable, as the more treatment options there are the better I think.

My best wishes to you,

Gavin

Hi Matilda,

I am sorry to hear that your dad is having a tough time right now and I understand how hard it is to sit there and watch your dad go through all of this. I know it is not easy. From what you say it sounds to me like you are doing the best you can for your dad right now, and I think that depression and sometimes not wanting to face up to all of this is not all that uncommon. When my dad went in for his PDT, he was put on Prozac and was kept on this throughout his fight.

I completely agree with Kate about the work that Macmillan do here in the UK. My dad had his own Macmillan nurse that would visit dad at home and the work they do is so important. I know myself when I contacted Macmillan to talk with them that they also helped me, so perhaps if you have the equivalent in Italy then they might be able to help you deal with all of this?

Has your dad spoke with a doctor about his swelling and the fever? My dad also had swelling in his legs and again, I think this is quite common with CC. Perhaps if his medication is not working then you could look to try other types of medication?

I know it’s not easy sometimes, but try and stay strong.

My best wishes to you and your dad,

Gavin

Hi Matilda,
Welcome to the board. Our Gavin is a great resource on PDT. I am curious as to why you are looking for another treatment when chemo seems to be working for your father?

I think I probably have a different perspective than many here on going to Britain for treatment. I live in a foreign country with the most wonderful caring husband and I have some good friends. However, I would never chose to be away from my home during this time. I dont know how much longer I have to live and considereing cc is usually not curable, I would much rather be home. I ask a simple question…what are you hoping to accomplish? Is more time worth it if it is spent alone in a foreign country without the support of other family members and the joy of being around your friends?

I am not trying to be negative, but I know that I would rather be at home in the US instead of in Sweden right now. Depression is a magor side effect of having cancer and moving to a new country during this time could cause this.

Best of luck.
Kris

Hi Bill,

Thanks for your update and for sharing your story with us all. My dad also had the PDT but just the one time, also with no chemo. His stent was metal but not wrapped in plastic so I would be interested in hearing more about that type of stent.

Glad to hear that you are having a better quaility of live and I hope that continues for a long time indeed.

Best wishes to you and Jenny,

Gavin

Hi Bob,

Welcome to the site. I can’t help you with anything regarding further opinions as to what doctors could look at your dad as I am in the UK, but I know that others will be able to chip in with recommendations. But I wanted to join the others in welcoming you here.

My dad was diagnosed in 2008 aged 64 with inoperable CC and he had a metal stent inserted and had PDT as his treatment. I am sure that others will come here with lots of suggestions of treatment facilities and doctors that will be able to help your dad. Keep coming back as you will get loads of support from us all, and there will be people here that can help you with any questions that you will have.

My best wishes to you and your dad,

Gavin

Hi Carol,

First off, congratulations on your upcoming marriage!! Now that is something to celebrate! As Darla says, living life to the fullest and enjoying it one day at a time sounds good.

Have you spoke with Prof Lodge about Photodynaimic Therapy, PDT? My dads CC was inoperable and he couldnt have radiation either, and this is the treatment that he had at Ninewells in Dundee. As you are based in Leeds, the nearest hospitals that I know that do this treatment would be the University Hospital Aintree and the North Manchester General.

You have a great attitude and I wish you every success with getting more treatment. And Kris is also right in that getting more opinions can’t do any harm either.

My best wishes to you,

Gavin

Hi BW,

Welcome to the site, although I am sorry that you have to be here. Please keep coming back as you will get a load of support and help from us all. And feel free to ask any and all questions that you might have and I know that we have so many people here that will be able to help.

Thank you so much for sharing your experiences with PDT. My dad was diagnosed in summer 2008 and his treatment was PDT. His specialist who did the procedure was part of a group running a trial at the time in the UK and one of his specialties was treating and researching inot the use of PDT for CC.

My dads treatment was very similar to yours, 2 injections of Photofrin 3 days before the laser treatment, but he had the metal stent instead of the plastic one that you get. His PDT was also done just once and not the 3 times that you had. Here is a link to my dads experiences with the treatment –

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

The point you make about sunlight, daylight, lighting and burning is so very important and as you are aware, it is so easy to burn, even when you think the light is not strong. My dad also had to get his glasses treated by his optician and the were blackened to the strongest level. He needed this level as conventional sunglsses were just not strong enough to protect his eyes. So, yes as you say, do not gamble with this! To test his skin to the light a few weeks after treatment, my dad used to go out into the garden with one glove on and a paper bag over his hand. He would cut a small inch squared hole in the bag and hold his hand in the sky for 10 minutes. If his skin reddened the next day then he would stay fully covered for another week and then test again using the same method.

If you or indeed anyone else has any questions regarding my dads experiences with his treatment please jsut ask and I will help if I can.

My best wishes to you,

Gavin

Hi Rowena,

Here are some links regarding PDT, I hope some of them may help explain it all. This one is my first post here and I talk about my dads PDT treatment-

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

http://en.wikipedia.org/wiki/Photodynamic_therapy

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Othertreatments/Photodynamictherapy.aspx

If there is anything specific that you want to ask me about my dads experiences with PDT then please just ask and I will help as best I can.

Best wishes,

Gavin

Hi, Irene,
Like you, I haven’t posted for awhile but I have been keeping up on the discussions. I was diagnosed in July, 09 with bile duct cancer and had a stent put it to open the duct. I finished my first round of Chemo and radiation the first of November. With the help of this board, I looked for a doctor who I thought had more experience with this cancer. I have consulted with others and each have told me that they would take a break and watch to see what happens. I have had a blood test every month and the CA-19 count went down some each month, except this time. It jumped from 1525 to 4074. I will talk to my doctor, hopefully, Monday, and she will order a CT scan and I will probably be back on chemo before the end of the month. I have had all the radiation I can have, so now it will be up to the chemo to keep it from growing. I know chemo will not cure it, but if it will keep it from growing, I will try it for awhile. It was so nice not having any treatments for four months, so I can understand Irenea’s thinking. But when my blood test came back this time, I know I have to try something to stop it if I can. I know you will make the right decision for you. I don’t know what PDT, so Gavin could you tell me.
Rowena