Search Results for 'gavin pdt'

Hi Jemima,

Sorry to hear that you didn’t seem to get all the answers that you were looking for today at your mums app. Hopefully you will find out more next Tuesday. Did you ask your mums surgeon about the possibility of trying Photodynamic Therapy, PDT? This combined with a metal stent was the treatment that my dad had. I’m not sure if I have mentioned this to you before so apologies if I have not, but it could be something worth discussing with the surgeon. I posted quite a bit here about my dads experiences with PDT so just look under my name if you want to read them. Or just ask me if there’s anything I can help with.

We all get to know what the waiting game is like and it is very frustrating indeed! But hopefully you will find out more on Tuesday.

My best wishes to you and your mum,

Gavin

Hi Xepalomero,

Welcome to the site although I am sorry that you find us all and I am sorry to hear of your Grandmothers diagnosis. And yes you are so right in that it is great that we have this place to come to where we can meet and talk with others in the same situation as ourselves.

I came here back in 2008 when my dad was diagnosed with inoperable CC and everyone here helped me so much and I know the same will be done for you, so please keep coming back as you will get a load of support and help if we can. The first we knew about my dads CC was when his jaundice appeared and then he was taken into hospital, had all the tests and 3 weeks later we got the news that we wdidnt want to hear. He had a metal stent inserted and underwent Photodynamic Therapy PDT as his treatment. He wasn’t suitable for surgery or radiation so he had the PDT.

I can’t help you with your questions regarding chemo as he never had that, but I am sure thatr others will be along soon that can help. Please keep us all up to date with everything and I hope you get some good news from Thursday’s meeting with the oncologist.

My best wishes to you and your Grandmother,

Gavin

Hi Fern,

Welcome to the site although I am sorry that you have to be here, and I am sorry to hear of your mums diagnosis. My dad was 64 when he was diagnosed with inoperable CC, tumour too close to the portal vein. His symptoms were the same as your mum, he had the jaundice and his GP sent him to the local hospital and they did all manner of tests, CT scan, MRI and 3 weeks later he got the news that we didn’t want to hear.

My dad wasn’t suitable for surgery or radiation so he had Photodynamic Therapy, PDT and also had a metal stent inserted. They were going to hopefully try chemo for him at some point but as it turned out he wasn’t suitable for that either.

I was my dads carer during his fight with CC so I do know how stressful this is for you right now. I know in my dads case that he wanted both myself and my mum to know what was going on with him and his treatment, and I took my dad to every GP, hospital and specialist meeting. That way I knew what the plan was and was able to speak with the docs on my dads behalf. I think If I was in your shoes then I would have a talk with your dad and express the concers that you have regarding your mum knowing exactly what is going on. As you say, it is hard to get answers from your mums doctors as she is at the meetings, and I agree with Kris in that your mum should be allowed to make these decisions.

I know when my dad got his diagnosis, he took it very badly at first, as we all did. That is natural. But then his attitude changed pretty quickly from what we can’t do to what we can do and his fighting spirit took over. How do you think your mum would react if you told her exactly what was going on?

We all know how tough all of this is, so please keep coming back and we will do all we can to help you.

Best wishes to you and your family,

Gavin

Hi Dianne,

My dad also used to get the chills that you talk of and he never had a temperature when they came on. They just used to come out of nowhere and he would shake for a while then they just seemed to stop as quickly as they started. It freaked dad and us out when he first had them, but then he got used to them and we knew that they would stop soon. We spoke with dads doctor and Macmillan nurse about them and they could offer no concrete reasons as to why they happened, but they did both agree with Marions explanation of the nerve endings. He also had a metal stent and they seemed to happen more when he was released from hospital after his PDT treatment.

Best wishes to you and your dad,

Gavin

Hi Tom,

Welcome to the site although I am sorry that you have to be here. And I am sorry to hear about your sister. Lainy is right in that a 2nd or 3rd opinion could be looked at if you have not already done that. I can’t help you with the chemo drug that you mention as my dad never had chemo or radiation. He had photodynamic therapy, PDT, as his only treatment. I don’t know if this would be suitable for your sister or not, but I guess that it is something that might be worth discussing with your sisters doctors.

I hope that you will keep coming back here as you will get a lot of support from us all, and if we can help in any way at all then we will.

My best wishes to you and your sister,

Gavin

Hi there,

I know what you mean about being inundated with options and information just after diagnosis and it is a lot of important information to have to take in and understand, especially during what is an emotional and stressful time. One thing I would suggest strongly is to make a list of any questions at all that you will have prepared ready to ask the oncologist and also to write down what he says. It is so easy to get flustered in these meeting and forget to ask something and also forget what has been said to you. I took my dad to all his meetings with his specialist and forgot things to ask and what was said to us sometimes. So a list will help you all.

As to my dads case, he was 64 when diagnosed and surgery of any type was not an option. We never asked how long dad had and he didn’t really want to know either. What was important to my dad was having a good quality of life for the time that he had left and this was something that we discussed with his specialist quite a bit. He felt that considering this and the only 2 treatment options available to my dad that PDT would be best for him at first with the possibility of doing chemo at a later point.

He had the PDT in September of 2008 and it managed to stop the tumour from growing any further, but it didn’t shrink it. Obviously we hoped for shrinkage but the next best thing was at least stopping it or slowing it down. After this his jaundice cleared up and he seemed fine until April of 09 when the jaundice came back and he started to go downhill again and another ct scan showed the tumour was growing again. Then suddenly he just seemed better again, jaundice disappeared and he looked and felt fine again. Then later in the year, around September I think he started to go downhill again and his local GP said to me that he didn’t think dad would have made it this far and that he thought he would have passed away around April when he went downhill again.

Dad passed away in December of last year and to be honest, I think he lasted longer than what his doctors thought he would. He never got to try chemo as when they assessed him as a candidate for it, his jaundice came back in a big way so they couldn’t do it. Dad only had PDT once, but I have heard of patients getting it every 3 months. I forgot to say that he also had a metal stent inserted as well.

I hope some of that helps and if I can help in any other way regarding my dads experiences with PDT then feel free to ask. Have you looked into other treatments like chemo, radiation or Cyberknife? The more information you have regarding everything to do with CC and possible treatment options the better. At the top of the page there the search forum function and this will throw up a lot of posts from members regarding a lot of other treatment options and their experiences of them. Keep coming back here and keep asking questions.

My best wishes to you and your family,

Gavin

Hi there,

Welcome to the site although I am sorry that you had to find us. And I am very sorry to hear of the news that the tumour was not rescectable. My dads CC was also diagnosed as inoperable due to it’s location being too close to the portal vein. His doctors thought his best treatment option was Photodynamic therapy, PDT which he had. But we are in Scotland and that type of treatment is done more frequenty here in the UK and I am not sure how much this is done in Canada. Hopefully others will be along soon with more information regarding possible treatment centres and options.

I hope you will keep coming back here as you will get a load of help and support from all of us here. I know how hard this diagnosis is to hear having went through it all with my dad, but please try and stay as positive as you can. And feel free to ask as many and all questions that you might have and we will all do what we can to help.

Best wishes,

Gavin

Hi Andie,

Have you spoken with your dads oncologist about starting your dad on any of these supplements to see what he/she thinks as to it interfering with his chemo? I mentioned milk thistle to my dads Macmillan nurse after he had his PDT and she felt it best to talk with his specialist before trying anything like that. But in the end he never gave it a try.

Has your dad tried something like Ensure drinks as a supplement to help put on weight? My dad was discharged from the hospital with a prescription for them for a while and they really helped him. He found it pretty easy just to have one of them to drink with each meal and he thought they tasted okay. Perhaps you could speak with your dads GP to see if he could try them? My mum has COPD and needs to put on wieght and she has a Skandiashake mix once a day along with her meals and that is helping her right now. But again, that is on prescription.

Best wishes

Gavin

Hi Jemima,

Welcome to the site although I am sorry that you had to find us. Where in the UK are you based? I agree with Kris that it is time for you to start making calls and to see what is actually going on and if your mum will be suitable for surgery or not. My dad was diagonsed in summer 2008 and it took his docs about 3 weeks to make the full diagnosis of inoperable CC. Then he started his PDT 1 week later.

If your mum does not have access to a clinical nurse specialist then I would take her to the GP and see if they can do anything about finding more info out. Does your mum have a Macmillan nurse? If so then they could also help. I know how frustrating all this waiting is when all you want to do is get some treatment for your mum.

Please keep coming back here as you will get a load of support and advice from us all. And feel free to ask any and all questions that you will have and someone here will be able to help.

My best wishes to you and your mum,

Gavin

Hi Slester,

Stable is indeed a victory. I know when my dad had his first CT scan after his PDT, we were also looking for shrinkage. But his specialist said that getting things stable was a good outcome and he was happy with that. I wish you every success with the clinical meds and the gemzar.

Best wishes,

Gavin

Andie,

Great news indeed and I bet that your dad can’t wait to get home! Also good to hear that his stent now seems to be working again and I hope that continues. My dad spent the best part of 7 weeks in hospital with diagnosis and his PDT treatment and as soon as he got home he wanted a fish supper!!

I hope he enjoys the fattening up process!!

Best wishes to you and your dad,

Gavin

Hi Damamma,

Welcome to the site although I am sorry that you had to find us. And I am sorry to hear of your sisters diagnosis. My dad was diagnosed in the summer of 2008 and his CC was deemed inoperable. His treatment was Photodynamic Therapy with the possibility of chemo to come, but he never had chemo. Has your sister spoke with her doctors about the possibility of other treatments such as radiation, PDT or Cyberknife?

Please feel free to ask any and all questions that you will have and I am sure that someone here will be able to help. At the top of the page there is a search function that you can use to look for postings on any topic and this will hopefully be of some use to you. I hope that you will keep coming back as you will get a load of support and help from us all.

My best wishes to you and your sister,

Gavin

Hi Andie,

Glad to hear that the docs are happy with how your dads stent is working so far, lets hope that continues. My dad spent the best part of 7 weeks in the hospital with his diagnosis and PDT treatment and he also lost weight. Like you and your dad, we put this down to lots of nil by mouth procedures and hospital food. Although the food at Ninewells was okay, it was not the same as home cooking. Although my dad did always look forward to getting back to ward after these procedures as he knew the nurses there would always make toast for him, always thinking with his stomach!

Great to hear that your dad has his spring back in his step now after being told he will get chemo, especially after originally being told no treatment. I know that for us, we felt much better after my dads diagnosis once his PDT treatment started and dads fightback begun. A rollercoaster ride of emotions along the way.

Best wishes to you and your dad,

Gavin

Hi Andie,

Welcome to the site, although I am sorry that you had to join us. I know how you are feeling right now as my dad was diagnosed back in summer 2008 with inoperable CC. I am also in the UK, up here in Dundee in Scotland. I would also be angry if my dad was given his diagnosis when he was on his own. When he got his diagnosis, myself and my mum were called into the hospital and the 3 of us were given the news at the same time. I can still remember what it felt like to hear these words, not good at all.

Have your dads doctors spoken with you at all about what treatment options there are for your dad? Have they talked about chemo or radiation? In my dads case, they felt like the best treatment at that time for him was PDT, photodynamic therapy. Perhaps that is something that you could discuss with your dads doctors and this type of treatment is available at a number of hospitals in the UK. If you want more info regarding this please just ask and I will talk more about my dads experiences with it.

As to Cyberknife, there are some people on here who have had that procedure and I am sure that they will be along soon to discuss that with you. As I understand it, there is only 1 clinic in the UK that does Cyberknife, in Harley Street in London and I am not sure if that can be done under the NHS.

Has your Dad been offered the services of a Macmillan nurse yet? Your dad should have been told about Macmillan nurses by now and I strongly recommend that your dad has one, he is entitled to one. They do so much great work and my dads Mac nurse was invaluable to us.

It souds like your dad has a great attitude and is right up for this fight, and a positive attitude will definitely help here. Please keep coming back here as you will get a ton of support and help from us all. If there is anything else that I can help you with then please do not hesitate to ask, if I can do anything at all I can do to help then I will.

My best wishes to you and your dad,

Gavin