Photodynamic Therapy (Page 2 of 2)

It is done under local anaesthetic. In my husband's case he had biliary tubes in place, so they used the tubes to insert the laser. The tubes had been left in place after the failed operation at another hospital. They didn't stent the bile duct then but left the tubes in to facillitate the PDT. I think that PDT is usually done endoscopically, but if there are tubes in place then it is easier. The laser was used on a 5 cms stricture (narrowing of the duct) and hopefully will make the duct more open and less likely to block in future. 

There were three doctors there; Steve, the radiologist and the anaethetist. All in all it took about 2-3 hours including the recovery period.

The stent will be placed tomorrow and hopefully no problems.

We don't have any plans for further scans. he had one on Friday and that seems to show that there has been no spread to other organs. I think we will monitor for the next few months by blood test and general sense of well-being.

Have you decided anything about your father's situation. Did they do the stent?
How is he?

My best wishes to you both,

Patricia

I may be wrong but I think there is special equipment needed, which may present a problem.  did you email the contacts I gave you to see if there is anywhere closer where you might travel for the PDT?
I am thinking of you and your father and I hope he gets over his fever and the new stent helps him feel better.
I have noticed with my husband that whatever they do (operation,stent insertion, PDT) and even if he procedure is successful,  he is affected. He loses his appetite gets tired more quickly and feels a bit sick. I think it is the body's way of saying 'leave me alone!'

I a sorry to hear that your dad has been recalled to the hospital. Please let us know how it goes. I wish him all the best  I will email you with an email address where you might have more success in getting info about PDT in northern Europe.

My husband was three nights in hospital. On Monday he had the PDT. Tuesday recovery.  Apart from a feeling of nausea and loss of appetite immediately after the procedure he was fine the next day. I have been told though that sometimes the PDT causes a 'flare-up' of symptoms. Wednesday they inserted the stent. THis is the first stent my husband has had. He biliary tubes since his discharge from hospital mid December. He came home Thursday and he's fine now.

We have decided - no more doctors. WE are planning to work on building his immune system to stop the spread of the cancer and hopefully to cause it to shrink. It's a long shot I know but the effects of chemo on quality of life and the long term effects on the immune system make us reluctant to go down this route. I know that most of the people on this forum are on some kind of chemotherapy and in some cases they have had good results but for us we plan a different route.
Wish us luck.

My husband takes a whole lot of tablets. The mushrooms you refer to are AHCC. You can't get them in the UK I order them over the internet from the US. He also takes Antioxidants, Vitamin K, co-enzyme 10, IP6 and milk thistle. All of these I researched on the internet and are said to be helpful in protecting the liver. He takes so many pills he rattles!!

A stent is a fairly rigid tube that is inserted into the bile duct and keeps it open. The drains were flexible tubes that were on the outside of his body. The ones leading to the outside were capped off and didn't drain from the liver. The internal ones took the bile from the liver down the duct and into the intestine.

They didn't stent after his operation so they could do the PDT through the tubes. They inserted the laser through the external tubes and into the bile duct. Once there they shone the light onto the tumour and the light interacted with the tumour cells and destroyed them. Not all but enough the make it easier to stent and to slow the rate of growth. If the PDT is repeated it will be done endoscopically because there is no access externally any more. Hope that is clear.

He can be in dull light. In fact he should stay in ordinary light but avoid direct sunlight. On Friday he sat by the window for an hour or two working and even though there was no direct sunlight, the side of his face and neck had 'sun burn'.  It didn't hurt but in very strong and direct light he could get blistering and more severe reactions. Indoor lighting is fine although they say avoid reading lamps and the like which are strong and directed.  It is very dull weather here in London at the moment so it's not difficult.
Enjoy your weekend.
Patricia

How is your dad? Has he decided about the chemotherapy? I would like to know if it was Prof Cunningham who advised you against chemo.

You say Wales but I'm guessing you mean the Bristol Cancer care Centre where both my husband and I went for 5 days. We found it really inspirational and helpful.

The details can be found on www.bristolcancerhelp.org/  I think everyone of the 12 people with us both carers and cancer sufferers were helped by the experience. I am completely different in my approach to this illness as compared with my attitude and behaviour before. Much calmer and more concentrated on the body's own ability to heal rather than looking for a medical fix.

I hope that your dad finds the help he is looking for.
Best wishes to you and your family
Patricia

I think the oncologist at UCH will be Dr Bridgewater. We have seen him; the usual chemo at UCH is 5FU but Dr Bridgewater is conducting a  trial of gemcitabane vs Gemcitabane & Cisplatin. They offered this to my husband but he has declined all chemo.

Re the median survival  your father will find this article by Stephen Jay Gould interesting.
http://www.cancerguide.org/median_not_msg.html
With a rare cancer he was told the median survival was 8 months in the event he survived 20 years and died of something else. .   

The response to the PDT was fine but today he has had a lot of nausea, which he has only in mild form until now. The consultant thinks that it a delayed reaction to the treatments and I tend to think so too

here's hoping tomorrow will bring a more normal day.
All the best to you and your dad,
Patricia.

Dear Patricia

I am getting worried since it is a couple of days since I have heard from you. Is everything ok?

Kind regards

Randi

Hello Patricia.

Good to hear that you are doing better, but I know it is wearing out to be a caretaker. Many times I do things for others instead of doing things for my self.

Lovely that your husband had the strength to out to a concert, were there no trouble with lights?

My dad is not all that well. I think the stents doesnt work properly. He has come down with fever a few days ago and the hospital has prescribed antibiotics but they dont want to see him. When he had fever in january they cultured his blood to give him the right antibiotics but they havent done this this time. And the outside drains bleed the other days and mum called them and they said that he should stay home. But of course we get worried when it is bleeding etc so we would prefer that they had said that we could come by for a quick look at it. The hospital said that the home nurse should close the tube so the bile should go in the intestine, I think it might have been to early to do that since a lot was coming out in the tube/bag, but they closed it. We are going to a talk at the hospital on tuesday, so hopefully all our questions will be answered then.

I never thought that ascites could go away without draining when it first had come? But hopefully they can find the source and stop it, I have heard that it should be very uncomfortable to have and in some cases make it difficult to breathe.

No we havent decided on pdt yet I am corresponding with different doctors abroad trying to find a hospital for instance in germany close to the danish border, so transportation will be less of a problem.

Have a nice weekend.

Regards Randi