Search Results for 'gavin pdt'

Hi Daughternlaw,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mother in law. But glad that you joined us here as you have come to the best place for support and help out there, and I know that you will get a load of each from everyone here.

First off, let me just say that I so agree with what Lainy says about seeking another opinion from a different ONC. Maybe not just another opinion but a few opinions if that is what your MIL wants here. Secondly and from what you have said to us, I think that the attitude of this ONC is terrible. I wouldn’t be keen on having him treat me either. Have you asked him how many patients he has seen and treated for CC?

My dad was diagnosed with inoperable CC and he was give the choice of chemo or PDT. He took the PDT over the chemo as he wanted a decent quality of life for the time that he had left. As such, I can’t give any personal experiences of what chemo is like, but I do know that so many memebers or their loved ones have gone or are going through chemo and I know that they will be along soon to share their experinces of chemo with you. Also, we do have a great chemo board here on the site that has tons of posts and thread regarding chemo and I am sure that that will be of great help to you as well.

As to your question regarding life expectancy and chemo, we can’t answer that for you with any certainty and also, I can’t offer any thoughts on quality of life either with chemo but I am sure that others will be able to chime in with their experiences here. From what I understand about chemo, people react and tolerate it differently from others and some types or combo’s of chemo’s affect people in different ways as well.

No apologies are ever needed for venting or rambling at all! So please, keep coming back here and venting and rambling some more! And let us know how everything goes for your MIL. We are all here for you, we know what you are going through and we care.

My best wishes to you and your mother in law,

Gavin

Hi Vicki,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. But I’m glad that you’ve joined us all here as you’ve come to the best place for support and help, and I know that you’ll get tons of both from everyone here.

As Lainy has said to you, have you looked into getting further opinions for your mum and if so, what did they say? My dads CC was also inoperable from diagnosis and he had PDT with a metal stent inserted too for his treatment. How is your mum doing after her first chemo treatment? We have a great chemo board here on the site with loads of contributions from the members and you will get a ton of information over there.

I know that you’ll have questions so please feel free to ask them and we’ll do what we can to help in answering them. We can’t promise to have all the answers but we’ll do our best to help. Please let us know how things go for your mum and please know as well that we are all here for you. We know what you are going through and we care.

My best wishes to you and your mum,

Gavin

Hi Anna,

My dads CC was also inoperable and he had Photodynamic Therapy (PDT) as his treatment along with a metal stent. He had no chemo or radiation and the PDT that he had he only had it once. I wrote a bit about his experiences with that treatment and if you want to read more about it you can do so here –

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

You ask if it was effective as a treatment. I would say in one way no as it didn’t get rid of the tumour but then again, we weren’t totally expecting that it would. But in another way yes it was effective as it stopped the growth of the tumour for a bit and it gave my dad what he wanted from that treatment, and that was quality of life for the time that he had left. And that is why he chose the PDT over chemo.

I hope some of that is useful.

My best wishes to you,

Gavin

Hi There,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. But I am glad that you have joined us all here as you have come to the best place for support and help, and you will get a ton of both from everyone here. And please, you never ever have to apologise for rambling! You want to ramble then you go right ahead and do so! And if you want to shout, vent or let of some steam then you go right ahead and do that as well! We know what you are going through right now and we care.

I too was my dad carer when he went through his fight with CC and like you I am the only child. I am also my mums carer and have been so for years and she has copd. It is tough being the carer is it not, and from what you have said it sounds like to me that you have done everything for your mum. Your mum is in good hands medically at MSKCC and I hope that she will get some good news next week when she meets with the onc.

My dads CC was also deemed inoperable from diagnosis for the same reason that your mums was, too close to the portal vein and he did have the PDT as his treatment along with the metal stent for his jaundice.

I know what you are feeling right now and going through and it is tough to deal with. And please know that we are here for you. As I said, I hope that your mu gets some good news next week and please keep coming back here and let us know how things go for your mum. We are here for you.

My best wishes to you and your mum,

Gavin

Hi Julia and Pamela,

Fluoxetine is indeed Prozac and my dad was put on that after his diagnosis and before he started his PDT. No wonder the doc put him on it considering he was away to spend 6 weeks in the same room! He had no side effects or reactions to it at all but was also told not to stop it quickly either.

On another note, a friend of mine started on Prozac also a few months ago after a nightmare separation from his wife. He went through a nightmare with his wife and his doc put him on 20mg to start with, now upped to 40mg. He was also told the same about not stopping it and that it would take time for the levels to build up from the Prozac before it started working for him. A few months later and it is working wonders for him with no side effects at all so far.

Hugs,

Gavin

Hi MMking,

Welcome to the site. Sorry that you had to find us all but i’m glad that you’ve joined in with us here as you will get tons of support and help from everyone here. And thanks as well for sharing your mums story with us, she sounds like a real trooper and fighter!

As to making a diagnosis of CC, this is a very hard cancer to diagnose and in my dads case, it took over 3 weeks for his doctors to make his diagnosis of inoperable CC. His docs also thought that it might be gall stones or gall bladder cancer before finally diagnosing CC. He never had the chemo, he had PDT and he also had the metal stent as well.

Also, no apologies are needed if you feel like writting a book, you go for it! I know that coming here loads helped me so much and I think that it will be good for you as well. Sounds like your mum has a great garden there and I hope that the peas will taste very sweet this year! I don’t have a garden here as I live in a flat, but I do like to grow chillis indoors here and they work well. And yes, it is indeed very therapeutic growing them.

Looking forward to hearing more from you and please keep coming back and let us know how your mum gets on. We are all here for you.

Best wishes,

Gavin

Hi Mark,

Sorry to hear what your dad is going through right now. I agree with what Marion has said to you about seeking further opinions from other specialists, doctors, onc’s etc, has your dad done this before now, and if not do you think he would want to do so now?

As Percy says, my dad had PDT as his only treatment for his CC. He never had chemo, surgery or radiation for various reasons and he wanted to do the PDT. I posted a bit about it back in 2008 when he had the procedure and this post here details his experience of it.

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

Please, if I can help in any way more about my dads expreinces with PDT then please just ask and I’ll do what I can to help. We are all here for you.

Best wishes to you and your dad,

Gavin

Hi,
Phototherapy(PDT) is used for treating extrahepatic bile duct cancer(cancer in the common bile duct and/or left and right hepatic bile ducts that goes to the liver) and PDT is not for intrahepatic liver (cancer in the liver).
Howerer IMRT(cyberknife) is also for extrahepatic CCA.
Gavin knows more about PDT and he will be in touch of you shortly.
But please make sure yours is extrahepatic CCA.
God bless.

Dear Deb,

I am so glad that we were able to help even just a little bit for you. Please keep coming back here as we will all continue to support and help you as much as we can.

I know what you mean about the “what if” thinking. I did that a bit too with my dad after he passed away. After my dads diagnosis, he had the choice of either chemo or PDT as his treatment and he chose PDT as he wanted the best quality of life for the time that he had left with us all. But after he passed, I sort of thought for a short time what would have happened if he’d done nthe chemo instead of the PDT.

But I’m with Lainy here in that the dwelling on the what if’s doesn’t do us any good. I know that it can be hard not to sometimes, but please don’t focus on this type of thinking. I’m sure that we all wish that we could go back and change things sometimes, but would that change what happens anyway.

We are all here for you.

Hugs,

Gavin

Hi Shlamoney,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what you are going through. But I’m glad that you’ve joined in with us all here as you will get a ton of support and help from all of us here.

Sorry that I can’t help you with any personal experiences of chemo as my dad never had that, but I know that you will get a load of help from the members here. My dad had the option of chemo but he wanted to go with what he felt would give him the best quality of life fro the time that he had left after he had his diagnosis. His CC wes deemed inoperable from diagnosis and he chose to have PDT as his treatment instead of the chemo.

I know that this is a tough call for you to make and I wish you every success with what you choose to do. There is a ton of info posted here on the site about all types of chemo etc by the members and I am sure that reading many of the posts will help you here. And please know that we are all here for you as well and stay in touch with us please. We care.

Best wishes,

Gavin

Hi,
The PDT message that both Gavin and I written was the response to your question this morning at 08:24 ; and nothing related to your sister’s intrahepatic CCA.

“I wonder if this treatment is possible for CC. I have browsed in the forum and I have not seen this topic. If anyone knows about this I would appreciate any reply.

Thank you

http://www.nextgenerationpdt.com/ “

and your are right ,PDT is not for your sister;radioembo or chemoembo are the radiation treatment choices if so you choose after consultation with an interventional radiologist. good luck and
God bless.