Photodynamic therapy
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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 Kate,
I do not know why doctors say that chemo is working for him as my father does not want we talk to them. However, he is experiencing swelling and he has also got fever. They gave him lots of medications but he is loosing weight and he’s becoming very weak.
In Italy we also have counselling, however it’s up to the patients to get that help. If the patient does not want, they will not give him counselling.
It’s difficult to deal with my father as once I told him to consult a counsellor and he was hurt by this.
Sometimes I am afraid to speak as everything I can say can be hurful for him.
Matilda
Also, from what I have read, PDT tends to be used in the UK as a palliative method of relieving the symptoms of jaundice, and helping to stent the bile duct. I believe a study showed it did not help on it’s own, but with a stent in place PDT can prolong the life and help to relieve some symptoms.
Matilda,
You mentioned that the chemo seems to be working for your father – have the doctors told you how they know that? And they keep him on the chemo even though he is having some heart problems? Do you know which drugs they are giving him?
In the UK we have a charity called Macmillan which does amazing work, including counselling with patients and carers. I wonder if you have anything in Italy like that. Your father’s reaction sounds normal, at first I remember my dad wouldn’t let us push the doctors for anything, and he would send us home from hospital so we didn’t see him struggling. You are already doing everything you can to help him, and he’ll be proud.
Hopefully the chemo will be having a real impact on the cancer.
Stay strong,
KateHello everybody,
Many thanks for your support. Lainy we are from Bari. Unfortunately, Sicilian dialect is very particular and difficult to understadn from us. Kris and Kate you are right about moving to another country to get PDT. I was just thinking about that because my father is experiencing bad side effects with the chemo. However, he is also depressed and he does not want to accept he has this bad cancer. I just want to help him. I must add that he is having a strange reaction as he does not want we take him to the hospital for the chemo and he wants to stay alone. He wants we go and visit him for one afternoon for example, but then he wants we go home. i think this is because he cannot accept the fact that he is ill. It is painful to see him so ill and in the meantime it is painful not to be able to help him as he does not want it.
He trusts his doctors and he thinks they will save him his life. I know it’s not a good idea to move him in another country but i just want he lives!In any case, thank you a lot for the support you are showing me. Thank you!
Matilda
Matilda,
I have to agree with Kris, I think she puts it very well. We are in the UK and PDT has not yet been mentioned, so I’m not sure how you would go about finding out about it. I would imagine it would be incredibly expensive.From the little I know about PDT it does have some fairly debilitating side effects, having to stay completely covered up in a darkened room in a foreign country would be an extremely difficult time for your father.
I hope you find some answers, have you read medical journals online in an attempt to find out when and if PDT can be effective?
Kate
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.
KrisHi Matilda,
Welcome to the site, although I am sorry that you and your dad have to be here. Please keep coming back as you will get tons of support and help from us all.
My dad was diagnosed with inoperable CC back in the summer of 2008 and his treatment was PDT with a metal stent inserted also. His specialist talked of the possibility of chemo at some later date but he did not get it. One of the reasons my dad took the PDT over the chemo was that the side effects of the PDT would be less than the chemo. If you would like to read of my dads experiences with PDT then you can use the search function to search for some of my earlier posts here on the website. Or if there is anything I can help with then please just ask and I will help if I can.
My dad had his treatment at Ninewells in Dundee, but here is a list of some of the other hospitals in the UK that I believe do this treatment –
University College Hospital London
QueenHello Matilda…..and a warm “hello” to your Dad. I don’t believe it to be a problem for you to find a radiologist in the UK in order to look at your Dad’s medical records. I am also enclosing a link so that you can familiarize yourself with PDT treatments. http://www.cancer.gov/cancertopics/factsheet/Therapy/photodynamic
Best wishes,
MarionHi Matlilda and Welcome to our Family. Where in Italy are you? My husband Salvatore’s family is from Aspera/Palermo area in Sicily so he can speak fluent Sicilian and a little Italian. If your dad would like to try to communicate with him let me know. If you can find out where they do the PDT you could possibly send your dad’s test results to them and they will let you know if he could be a candidate or what else may be tried. We have a few on Board here who are in that area and I know someone will hop on and direct you as to where you might do this. Please keep us posted.
Hello everybody,
My dad Antonio has been diagnosed with inoperable cholangiocarcinoma this February. He is 65 years old. I told him about this website and he asked me to tell you about his cancer. He needs much encouragment but he cannot join the website because he does not speak English. We are Italians and this is the first website where people involved in some ways with this cancer, can share their views.
My father is doing chemo but I have read some of you are doing photodynamic therapy. In Italy this therapy is forbidden. Do you think it works more than the chemo? My father has been very weak since he has started the treatment. he has also experienced swelling and some heart problems. However, doctors do not want to stop the chemo as it seems it’s working well for him. I would like to share some views about the photodynamic therapy as I know that in Great Britain they do that and the side effects are not as much bad as the chemo. I am thinking to move to the UK to have this treatment. I want to do everything I can to prolong my father’s life as much as possible.
Many thanks.Matilda
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