Search Results for 'gavin pdt'

Hi Wendy,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad. But I am glad that you have joined us all and you have come to the right place, and you will get a ton of support from all of us here. The yellowiong of the skin was the first symptom that my dad showed as well, along with the yellowing of the eyes and the dreaded itching. His GP saw this and sent my dad to the hospital where they then did all the tests and scans etc, then over 3 weeks later they diagnosed him with inoperable CC. He too had a stent inserted, a metal one and he had PDT as his treatment. What type of stent did your dad have inserted, a plastic one or a metal one?

Here are some links regarding food and nutrition that may be of use to you. I just posted this one –

http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Eatingwell/Eatingwell.aspx

And we have a great section here on the site all about nutrition here –

http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=12

Please feel free to ask any questions that you have and we will all do what we can to help in answering them. We are not doctors but we know what you are going through and we care. Please let us know how your dad gets on.

My best wishes to you and your dad,

Gavin

Hi Betty and Karen,

Welcome to the site. Sorry that you had to find us all but I am glad that you both have joined in with us here. I am sorry also to hear about your dad, but you have come to the right place here as you will both get so much support from all of us and there is a wealth of information and knowledge here as well. None of us are doctors, but we will all do what we can to help you both so please feel free to ask any and all questions that you have.

I know how you both feel right now, my dad was diagnosed back in 2008 with inoperable CC and he could not have any surgery due to the location of his tumour, too close to the portal vein. He had PDT as his treatment with a metal stent inserted as well. Where abouts was your dad diagnosed, and has he had a CT scan or indeed any other scans? I can’t help you specifically regarding insulin as my dad was not a diabetic, but you could try using the “search forum” function at the top of the page to search for other posts on the site that may be of use to you.

When your dad was diagnosed, was he diagnosed by a doctor that has had experience in dealing with patients with CC, preferably at a major hospital? You say that your dad is on hospice care, is he still at home with hospice coming to his house to see him? If so then I would suggest speaking with them to see if something can be done about his vomiting. If not then I would suggest getting your dad seen as soon as possible about the vomiting. Is he on anything just now for the nausea? There are a wide range of medications out there for nausea and my dad had many issues with that. He tried a variety of types and combinations of these meds to deal with this.

Please keep coming back here and let us know how your dad is doing. We know what you are going through right now and we care.

My best wishes to you both and to your dad,

Gavin

Hi Percy,

Thanks for this. My dad had a lot of issues with sleeping and relaxing after he got home from having his PDT. No wonder I guess seeing as he had just spent 6 weeks in a small room on his own in the hospital. The major side effect of PDT as I am sure you are aware is skin sensitivity to light, so had to spend 6 weeks in a room on his own with the light being controlled.

Anyway, he started getting Reiki massages to help him sleep and relax and they worked well when he had them. First time he got one he was snoozing soundly after 10 minutes inot the massage! He started getting them once a week at home, then when he started going to the day care centre he was getting them twice a week and he loved them.

My dad was also put on Prozac when he was going through his hospital stay for the PDT and they kept him on it once he got home, and he tried Zopiclone as well to help with his sleeping at night.

Best wishes,

Gavin

Hi Katie,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum. But I am glad that you have joined us all here as you will get a ton of support and help from all of us. We are not doctors, but there is so much information here and please, feel free to ask any questions that you might have and we will do what we can to help in answering them.

Some links that may be of use to you. Major treatment centres in the USA –

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

And this is a list of doctors created by the members here –

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

My dads CC was also deemed inoprable from diagnosis and I remember how that felt when we got the news, and yes it was scary. His was deemed inoperable as the tumour was to close to the portal aretry and he had PDT as his treatment along with having a metal stent inserted.

You will find out more information tomorrow when your mum meets with her oncologist and please let us know how this goes. But yes, I do agree that it would be best if your mum could be seen by a doctor who has experience in dealing with patients with CC in a major centre. When your mum was diagnosed, did the doctors talk about other treatments such as chemo, radiation etc?

Please let us know how your mum gets on and keep coming back here. We know what you are going through right now and we care.

My best wishes to you and your mum,

Gavin

Hi Julie,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your husband also. But I’m glad that you have joined us here as you have come to the right place for help and support, and you will get a ton of support from all of us here.

Yes most of the members here are from and based in the USA, but we do have a number of members from the UK and elsewhere and I am certain that they will be along soon to chime in with their thoughts. As Percy has said to you, I am from Scotland, and my dad was diagnosed and treated with PDT here in Dundee where we live. Where do you live, and where was your husband diagnosed and where did he have his chemo?

Has your husband thought about seeking a second or even third opinion, or have you already done that? My dads CC was also deemed inoperable from his diagnosis and he had PDT with a metal stent inserted. Did your husbands doctors mention any of the treatments that Percy talks about?

Keep coming back here Julie and please feel free to ask all of the questions that you have, and we will do what we can to help in answering them. And please let us know how your husband is doing. We know what you are going through right now and how you feel.

My best wishes to you and your husband,

Gavin

Hi Cby1,

Welcome to the site. Sorry that you had to find us all but glad that you have joined us here. You have come to the right place as you will get a load of support and help here from all of us. That is great that your dad was able to have his whipple op and that he has made a great recovery as well.

I can’t really say too much about chemo as my dad never had it, turned out that he couldn’t have it anyway. But I so agree with what the others have said that it should be up to your dad to decide if he wants to have it or not. In my dads case, his CC was deemed inoperable from diagnosis and he could have had chemo as his treatment if he wanted that. But he wanted to have the best possible quality of life that he could so he went for PDT rather than chemo as the side affects of PDT he felt would not be as much as the possible affects from chemo. It was his choice and I supported him fully in that.

I hope that you keep coming back here and please feel free to ask any questions that you will have. And please let us know how your dad gets on.

My best wishes to you and your dad,

Gavin

Hi there,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your dads diagnosis. But I am glad that you have joined us all here as you will get a ton of support from all of us. We know what you are going through right now and you have come to the right place.

First off, it is normal to be scared about your dads diagnosis. I felt like that too when my dad was diagnosed back in 2008 with inoperable CC. Until then, I had never heard of CC and to say that his diagnosis came out of the blue is a huge understatement indeed. My dad was unable to have a resection or surgery of any kind, and as it turned out, he could not have chemo either. He had PDT as his treatment. Where about was your dad diagnosed and have you thought about seeking another opinion for him? If your dads doctor does not want to go ahead with the resection then another opinion would be something that you could perhaps look at. Where about in the US do you live? I am from Scotland and my dad was treated here in Scotland.

I agree with Marion that right now you need to focus on your dad and being there for him as he will need you there beside him through all of this. I was there with my dad throughout his fight and attended all his Gi apps, tests etc with him, and I know how much that will mean to your dad that you will be there with him. Please do not worry about the genetics of this and whether you will be affected by CC in the years to come. As Marion said, there is no evidence to suggest that this will be an issue for you. Please keep all of your energy focused on your dad right now.

I know what you mean about the sleepless nights, we here have had many of them. But you have done the right thing in coming here and seeking information, and the more informed you are the better you will be able to help your dad throughout this. So please, feel free to ask any and all questions that you have and we will all do what we can to help in answering them. And please keep us all updated on what is happening with your dad. We know what you are going through.

My best wishes to you and your dad,

Gavin

Hi Rodo,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad also. But I am glad that you have joined us all as you will get a load of support from all of us. So please feel free to ask any questions that you have and we will all do what we can to help in answering them.

Your dad sure has been through a lot and especially so with having to relocate to NY to seek treatment. But that is great news indeed about his shrinkage following his chemo treatment and also good to hear about the no metastasis. My dad too was prescribed anti-depressants after he started his PDT treatment and he was on prozac. From what you have told us it sounds like you are doing everything possible for your dad here and please do not give up hope. We know what you and your dad are going through and we care, so please keep coming back here and keep us updated on everything.

My best wishes to you and your dad,

Gavin

Hi Heartdoc,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. I can’t really add anything to what the others have said to you but I just wanted to come here and welcome you here.

You are not alone here and we know what you are going through. I came here back in 2008 when my dad was diagnosed with inoperable CC and everyone here was such great support to me, and I know that everyone will also be of great support to you as well. My dad chose not to have chemo at first as he wanted to have a good quality of life for the time that he had left, so he had PDT as his first treatment with the possibility of chemo to follow. But as things turned out he couldn’t do the chemo. But he made the most of the good time that he had and he evn learned to ride a horse. I too hope that your mum will make the most of this time and enjoy life as best she can, and I am sure also that you and her grandkids will indeed make many happy memories for your mum.

I do hope that you will keep coming back here as we do know how you feel and what you are going through right now and we care.

My best wishes to you and your mum,

Gavin

Hi Jeff,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad. Yes this news hitting you like a ton of bricks is something that I and others here can relate to. My dad was diagnosed back in 2008 with inoperable CC and I can stil remember what hearing that news felt like. He had PDT and a metal stent inserted as his treatment and he couldn’t have surgery or radiation at the time. And as things turned out, he wasn’t able to do chemo either at a later date due to the jaundice coming back.

That is great to hear that your dad is in good spirits and is up for fighting this. A positive attitude will help him a lot here. We know what you are going through right now and how you are feeling, so please keep coming back here, post away, ask questions and if you feel the need to vent away then do so, we understand.

I can’t help you really regarding the doctors or treatment facilities you mention as I am in Scotland, but I am sure that others will be along soon that may be able to help with your question. In the meantime here are some links that may be of use to you.

Here is a list of major treatment facilities in the USA –

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

Getting as many opinions as you can for your dad is a great idea. And seeing as this cancer is so rare, get these opinions from doctors who have had lots of experience in dealing with patients with CC. The following is a list of treatment centres and doctors that was created here by our members, I am sure that it will be of use to you, most of it is US based –

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

Did your dads doctors talk with you about any type of radiation treatment? And as far as chemo goes, did they talk about the gemcitibine/cisplatin combo? There is a good chemotherapy board here with many posts by the members here and maybe that will be of use to you –

http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=16

I hope that you will keep coming back and please keep us update on how your dad is doing.

My best wishes to you and your dad,

Gavin

Hi Vivcoles,

Welcome to the site. Sorry that you had to find us all but I am glad that you have joined us, and thank you so much for sharing your story with us all. I am very happy to hear that you found a surgeon who would do your surgery when others might not have. The Royal Marsden has an excellent reputation and experience of treating patients with CC. What was the name of the surgeon who did your surgery? We have a number of members here from the UK and this could be of interest to them.

I am also from the UK, in Dundee and my dad was treated with PDT in Ninewells in Dundee. Do you know what chemo regimen that you will be on? I hope that you will keep coming back here as you will get a load of support from the great members here, and please feel free to ask any questions and we will all help if we can. I wish you a speedy recovery from your surgery.

My best wishes to you,

Gavin

Hi Jukka,

Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear that the doctors were not able to complete your surgery. From what I have read from the members here, not being able to complete a surgery once started happens quite a bit. I am glad that you have joined us all here as you will get so much support and help from all of us. And please, feel free to ask any questions that you might have and we will all do what we can to help in answering them.

I can’t really help you with regards to your chemo questions as my dad was not able to have chemo and he had PDT as his treatment. But I am sure that others will be along soon to share their experiences of chemo with you. In the meantime, we do have a good chemo board here that may be of use to you, and also, the search forum function at the top of the page will throw up many discussions involving chemo from our members.

Are you being treated in a hospital in Finland? I look forward to reading more of your posts.

My best wishes to you,

Gavin

Hi Minnie,

My dad didn’t have a lot of pain, but he had some when he was at home. After his PDT, he started off on paracetamol 3 times a day then that was upped to 4 times a day. Then he moved on to Solpadols, 3 times a day at first then eventually that was also incrteased to 4 times a day. Occasionally he would get twinges of pain in his back and abdomen, and also around the area where he had the metal stent. And also he used to get a very sharp shooting pain that would pass just as quickly as it would come on, but the docs did not know what caused that pain.

My best wishes to you and Karl,

Gavin

Hi Tim,

Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear about your dad. I can’t really add to what the others have already said to you but I just wanted to join them all in welcoming you here. I am glad that you have joined us all here as you will get a ton of support from all of us. So please, feel free to ask any questions at all when you have them and I know that the members here will do what they can to help in answering them.

I was my dads carer as well when he was given the diagnosis of CC and I know what you are going through and how you are feeling right now. His CC was deemed as inoperable from the start and that is why he had a metal stent inserted to help the bile to start draining which worked very well for him. He aslo had PDT as his treatment. Like you, I had never heard of CC before this point and it all came as such a shock. Coming here helped me so much in many ways and I am sure that coming here and the great people here will also help you, so I hope that you will keep coming back as we will all be here for you. You are doing the right thing in seeking more information about CC and what options your dad has, and I know that your dad will be so very proud of you. Please let us know how you get on with this and keep us updated on how your dad is doing.

My best wishes to you and your dad,

Gavin