Search Results for 'gavin pdt'

Hi Tom,

Welcome to the site. I can’t help you regarding chemo options in the US as I live in the UK, but I just wanted to join in with the others in welcoming you here. Sorry that you had to find us all, but I am glad that you have joined us as you and Ben will get a ton of support from us all.

As you can see, you have already been given some great answers to your questions, but please feel free to ask as many and all questions that you will have and we will all do what we can to help you. My dad was also diagnosed with inoperable CC back in 2008 and he had the metal stent inserted followed by PDT, and once he had the stent inserted he started to feel a lot better as well. Looking forward to reading more from you and good luck in finding the right centre and doctor.

Best wishes to you and Ben,

Gavin

Hi Alid,

Welcome to the site and thank you so much for sharing your mums story with us all. From what you have said, it sounds like your mum and all of you have a great positive attitude, and as you have found out, this will help carry you all a long way. So long may that continue!

My dad was also diagnosed with inoperable CC back in 2008 and he had the metal stent inserted and also had PDT with no chemo. He went down this route as like your mum, he wanted the best quality of life that he could possibly have. I hope that you keep coming back here and I look forward to hearing more about how your mum is doing.

Best wishes to you and your mum,

Gavin

Hi Nidhi,

Welcome to the site, although I am sorry that you had to find us all and I am sorry to hear about your mother. I too agree with everything that has been siad to you regarding your mothers right to know what is going on with her health. My dad was diagnosed back in 2008 and his CC was deemed inoperable. He had PDT as his treatment but he could have had chemo at the time should he have chosen it. The decision he took to go for PDT over the chemo was his to make and he made it based on all the information that he was given by the doctors. Had he not known the full extent of his illness then he would not have been able to make such an informed decision.

I know that none of this is easy to deal with and discuss. But I do believe that your mother has the right to know what is going on so that she can make the choices that she wants to. And as Kris says, there may things that your mum might want to say and decsions to be made by her as to how she wants to live her life. My dad had to make these same decisions about how to live the rest of his life after his diagnosis and that is why he chose PDT over chemo. Had he not had the full information then he would not have been able to make that decsion. Please do keep coming back here as we know what you are going through right now and we care.

My best wishes to you and your mother.

Gavin

Hi D,

Welcome to the site, although I am sorry to hear of your brothers diagnosis and that you had to find us all. Please keep coming back here as you will get a load of support from us all, and feel free to ask any questions and we will help if we can.

Where about was your brother diagnosed and where is he being seen? My dads experience was different to your brothers in that his jaundice was the first symptom that showed. He was diagnosed back in 2008 with inoperable CC and he had PDT as his treatment. Has your brother had a second opinion here?

I am sure that others will be along soon to offer their thoughts and experiences. What is your borther being given for the pain and if this is not working then perhaps it is worth discussing with the doctors an alternative type of medication.

Best wishes to you and your brother,

Gavin

Hi Isellure,

Welcome to the site, although I am sorry to hear about your mother in law. Is your mother in law jaundiced right now? If so then hopefully the drain and the stent will help clear this up and then she should start to feel a bit better. My dad was jaundiced and this was the first symptom that he showed before he was diagnosed with inoperable CC. He also had the drain and a metal stent inserted and once this started to wrok he started feeling a lot better. Once this was done, my dad had PDT as his treatment as he couldn’t have surgery or radiation either. Have the doctors talked with you about the possible treatment options other than surgery?

I am glad that you joined us all here as you will get a load of support and help from everyone, so please feel free to ask any questions that you have. I am sure that others will be along soon to offer their knowledge and experiences with you. I know that all of this is hard to deal with and yes it is sad. My dad was the same in the a few weeks beforen he was diagnosed he was like your mother in law, full of life, busy and active. Please don’t give up hope.

Best wishes to you and your mother in law,

Gavin

Hi Roni,

Thanks for the update on your dad. I remember when my dad was diagnosed he took it pretty hard. His CC was inoperable and he spent pretty much the next 7 weeks in the hospital and had his PDT treatment. He had quite a lot of rough days and even when he came home, it took quite some time for my dad to come to terms with everything. But after he was home for a while his mood lifted quite a lot and he got back to his old self. Talking about things helped for my dad and we talked quite a bit. Hopefully your dads mood will lift a bit now that he is back home with his family.

Another thing that worked wonders for my dad was him going to the day care centre here. He was sceptical at first so we went up to see what it was like but dad kept an open mind about it. Well he absolutely loved it! He started going just once a week for a few hours then started going twice a week, again for about 5 hours each day. I do think that this helped my dad enormously as it let him see and feel that he was not on his own in this and he was around other people who also had cancer. But not only that, they used to have a great laugh there with each other and humour is always a good thing! I don’t know if this sort of thing is for everyone, perhaps not, but it worked wonders for my dad and his mood. Perhaps this is something that you could look into for your dad?

Keeping my fingers crossed for your dad with his app with the onc on Monday.

Best wishes to you and your dad,

Gavin

Hello PGTips. Welcome aboard.

I reside in York, and had a whipples resection at St. James in Leeds, followed by six chemotherapy back in York.

I do not know much about PDT, and do not know whether St. James do it, but it is my understanding that St. James is the most specialised hospital in Europe for treating cancer, and have a lot of experience of treating CC. The treatment and care I received there are second to none.

As Kris said, there is a good site on Facebook (AMMF), and the AMMF Website as well, for more information within the UK. Myself, Gavin, and several others from this forum go on there. I am sure that Helen Morement, the founder, will be able to assist you with any queries you may have. Sending all my love and prayers to you and your mum, and hoping that you may find some answers to your questions at this very troubling time.

Lots of love to you,

Sylvia xx

Welcome Pgtips. I was originally diagnosed in Glasgow. What part of the country are you from? Gavin, a very wonderful member and moderator, is familiar with PDT in Britain. His father had it done I think in Dundee. So it is being used in Britain. He is our current “expert” on the treatment. I am sure he will be around soon to welcome you and answer some questions.

In case you havent found it yet, Britain has its own cholangiocarcinoma charity…AMMF which is run by Helen Morement. It has a facebook and webpage. Perhaps they know more places in the UK where PDT is offered for this type of cancer. IT wouldnt hurt to ask them.

You are in the right place for support and information. We are a tight group that really does our best to help each other.

Kris

Hi Manish,

Thank you for your post and for providing some more information on your dad and his condition. That must be hard for you being in the UK when your dad is in India just now, but as you say, it is good that he has the support of your mum and the rest of the family and his friends in his home town.

One question on the stents. I know you said the doctors would not do it now as your dads bili levels had dropped from 12 to 2, but did they discuss with you the possibility of inserting the stents should your dads bili levels start to increase at some point in the future?

As to the chemo and quality of life issues, I can’t really talk about that as my dad never had chemo. But the issue of quality of life and to have the chemo ot not is one that my dad had to make. He could have had chemo had he wanted it as his first treatment, but we couldn’t be sure that it would work or that it would extend his life. My dad wanted a decent quality of life after his diagnosis so he opted not to have it and had PDT instead as his first treatment with the option maybe of having chemo later down the road. I think the decision to have chemo or not if offered is a common issue for many and as Linda says, it is a decision that each individual has to make based on their own circumstances. Hopefully others will be able to share their own experiences with chemo with you. Good luck with everything and I am sure that your dad will make the right decision for him.

Best wishes to you and your dad,

Gavin

Hi Charley,

I came here back in the summer of 2008 when my dad was diagnosed with CC, not me. His CC was inoperable and he had PDT as his treatment and he did not have chemo or radiation either. The hope was that he would get chemo at a later date if needed, but as it turned out he couldn’t get chemo as the jaundice came back and his bili levels were too high.

I know what you mean about all of this being so confusing, but the more that you learn about CC the better informed you will be when it comes to making decisions etc. As to the surgery, have you looked at getting another opinion from a different doctor about surgery?

Hoping that you have a bright and sunshiny day also!

Best wishes,

Gavin

Hi Manish,

Welcome to the site although I’m sorry that you had to find us all, and I am sorry to hear about your dads condition. Where in the UK are you and where is your dad being treated here in the UK? I came here back in 2008 when my dad was diagonsed with inoperable CC and he was diagnosed and treated at Ninewells here in Dundee. I am glad that you have joined us all here as you will get a ton of support and help from us all.

After my dad was diagnosed, he was treated with PDT and had a metal stent inserted as he could not have any surgery or radiation and they hoped to try chemo at a later date. As things turned out, he couldn’t do chemo as the jaundice came back and his bili levels were too high. I can’t remember what the levels were, but they said that they couldn’t do it if they were over a certain level but I’m not sure what the levels had to be. One of the reasons my dad went for the PDT instead of the chemo first is that dad wanted a certain quality of life at his stage and there were no guarantees that the chemo would work, so I know what you are going through right now with your dad and his quality of life issue.

You are right in that coming to terms with this is very hard for all of your family and all of us here have been there where you are now. What might help you right now is having access to a Macmillan nurse. My dad had one and she was great for my dad and would come visit him at home, explain things for him and was great in liasing between the doctors and my dad. Has your dad been offered the services of a Macmillan nurse?

My dad suffered quite a lot fom fatigue and found it difficult to sleep right through the night, even after taking a sleeping tablet some nights. He used to nap a lot through the day and did so for most of the time after his diagnosis, and I think fatigue is quite common with this. Aside from chemo, has your dads doctors mentioned anything about any other types of treatment right now?

I know this is tough Manish, but keep coming back here and let us know how your dad is doing. We are all here for you.

Best wishes to you and your dad,

Gavin

Hi Melil,

Welcome to the site, but I’m sorry that you had to find us all but glad that you have joined us all. I came here back in 2008 when my dad was diagnosed and everyone here helped me so much, and I know that everyone will also help you so please keep coming back as you will get a load of support from us all.

My dads CC was also diagnosed as inoperable for pretty much the same reason as your dads, too close to the veins and arteries. His treatment was PDT with the hope of doing chemo at a later date, but as it turned out he couldn’t get it. The first we knew something was wrong was when the jaundice showed up, then he had all the tests in the hospital and then we got the diagnosis. I can’t share my dads experiences of chemo as he never had it, but I know that others will be along soon to share their experiences of chemo with you.

What kind of foods has your dad been eating and does he have any pains in his stomach? My dad had issues with nausea and eating and his specialist told him to eat fods that are easily broken down, such as mince, soup etc. As to the nausea, is your dad taking any medication for this as there are a variety of meds out there that may help your dad with this.

I don’t know a lot about chemo, but it seems that the gem/cis combination is now being used as the standard chemo treatment for CC now. Others may be able to chime in with their thoughts on this issue. I know that trying to take all of this in is not easy, especially during what is a stressful time. I went through the same with my dad, but please do not give up hope. Keep coming back here and we will all be here for you.

My best wishes to you and your dad,

Gavin

Hi Krisi,

Welcome to the site although I am sorry that you had to find us, but I am glad that you have joined us all here. We are a very friendly bunch here and we will help and support you as best we can. I came here back in 2008 when my dad was diagnosed and I am glad that I did as the support and knowledge here is excellent. Please feel free to ask as many questions as you want and I know that we will help you as best we can.

I can’t share with you my dads experiences with chemo as he never had that, he had PDT as his treatment. But I know that others will be along soon to share with you their experinces of chemo. At the top of the page there is the search forum function and if you use that you will see a ton of posts regarding chemo.

You are so right that you have something to fight for and you sound like you are up for the fight. I know that this must be hard for you to accept right now and deal with, but you are doing the right thing here in reaching out to others. Please keep coming back here and we will all be here for you.

My best wishes to you and your family,

Gavin

Hi Andie,

How is your dad today, and how are you today? I know sometimes it is so hard to stay positive when dealing with all of this, but please don’t give up hope. Come here and vent if need be and we will all be here for you, I and everyone here know what you are going through right now and we know how hard it is.

My dad also used to drink tomato juice, he loved it and drank it for years! When my dad underwent his PDT, he had to stay in the same small room in the hospital for over 3 weeks immediately after the treatment. It was tough for dad as he couldn’t have the light on and had to keep the curtains drawn for most of that time. And it was at that point that dads specialist put him on Prozac to see him through that period. I don’t know if that is the answer for your dad or not and if he doesn’t want to go down that road then that is fair enough.

Do you think your dad would benefit from being around other cancer patients and having the chance to talk with them? If so then he would probably be able to get into a day care centre for a few hours a week. My dad was a bit sceptical about going there when his Macmillan nurse suggested it, but we went up with an open mind to see what it was like and he loved it. He started off just going once a week for a few hours then he started going twice a week every week. I don’t know if that is something that your dad would do or not, but maybe it is worth looking into?

And as to your week in Wales with your husband and son, please don’t feel guilty about going. You need a break as well and I think this will do you some good, especially as your mum and dad are saying to go. I do hope that your dad gets some good news on Friday and that you can go away next Monday and try and enjoy the break.

Best wishes to you and your dad,

Gavin