Photodynamic Therapy
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Dear Patricia.
Thank you for your answers. Hope everything is going well.
After being cancelled twice on to seperate days dad got a new stent in on tuesday. His bilirubin is high so he is a bit jaundiced. They will do bloodtest on wednesday to check. But actually we might be going to the hospital later to night because he is having a fever. It could be an infection or a reaction to the new stent. But he number or CRP c-reative protein is also too high, it is marker for infection.
We haven’t decided on what to do regarding PDT, but if the stents keep on clogging it must be the answer. I have a plan to research what it would cost to the a doctor from abroad to come here and do the procedure. I guess doctors here could be interested in learning about it.
Have a nice weekend.
Randi
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
Dear Patricia.
Good to hear that the procedure went well. Was it done under general aneastethics (wrong spelled I guess) and how long did it take?
Was it Steve himself that perfomed the pdt?
Now he has the stent placed tomorrow and the home you go? Is there any control appointments planned?
Really good to hear that you both are alright.
Randi
My husband had the treatment yesterday. Felt a bit poorly afterwards but today he is back to normal. The doctors drained the ascites. They are not sure if it is a sign that the peritineum has nodules.
Now I think we will try to get on with business as usual. Concentrate on alternative approaches to self healing and hope for the best. The next step is to try and build up strength through exercise and good diet.
I have asked my GP to monitor my husband’s liver function by regular blood testing so that we can keep an eye on how things are developing without having to go the the hospital.patricia,
i have read alot of very encouraging reports of PDT, it certainly looks like a very promising treatment – good luck, jules
I have had another thought. There are only 600 cases of cc in the UK every year. That amounts to 1 in 100,000 of the population. In Denmark where the population is very much snaller, the experience that doctors have with this rare disease is probably very limited and therefore they are unlikely to consider non- traditional treatments. They may not even have the right equipment /machines, although PDT is widely used in oesophigeal cancer.
Thank you for your kind words. We are quite optimistic that this treatment might help. It can also be repeated if the patient is prepared to put up with the restrictions on exposure to light. I heard of a patient who had four treatments and is 4 years survival post diagnosis.
Have you spoken to the doctors in Denmark about the possibility of PDT? Maybe it is available in another Scandanavian country where your father might feel more comfortable. Please email me at drav62@yahoo.com and I will give you a contact where you can find out where trials are being done closer to Denmark or possibly even in Denmark. I have found that doctors are not very well informed about this type of treatment and don
Dear Patricia.
I will pray that the procedure will be succesful this will give you longer time together.
I have asked my dad if he would try pdt but he decline since it is in england and he doesnt speak english.
Would you tell me the name of the hospital where you are having the pdt.
Are you having to pay yourselves could tell an estimated amount.
I cross my fingers for you. My dad is jaundiced again and is going in on monday hopefully to have the stents replaced allthough last time the said that they couldnt changed them anymore because the tumor is hard as wood, so it is very difficult for them.
Just had a thougth is your husband in room without other patients so now one accidentaly lets sunshine in?
Best of luck to you both
Randi
Thank you Caroline,
My husband had the dye injected today and is now sitting in a low light room. He has to avoid bright sunlight for 30 days. No problem for us here in London where the weather is really dull. On Monday he will have the PDT. I will keep you posted.Some good news. The blood tests done yesterday are all normal or very close to normal. ALP and GGT are raised but I have just read an article saying that high doses of milk thistle can help with this. Bilirubin is normal (16); considering it was 600 in December this is a very good sign that the biliary drains are working.
I asked the doctor about the scans, he said he would have to look at them with the radiologist on Monday but there is no obvious sign that there has been any spread to other organs.
My husband appears to have some ascites (fluid in the abdomen) which is not a good sign. They will check it out on Monday and probably drain it at the same time. My husband has had this before after his operation when they drained it and it didn’t recur until now. So let’s hope for the best.
Thank you for your support and kind thoughts.
Patricia.Patricia-
Thinking of you and your husband today and all this next week. I will be most anxious to hear about PDT, as your postings are the first I have ever heard of this. Wishing and praying for the very best of outcomes.
Your post to Jules had some good info and gives me hope.
-Caroline Stoufer
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My husband will have the dye injected today (Sat) and on Monday will have the PDT. On Wednesday he will have a metal stent inserted and the biliary tubes internalised.
Wish us luck and I will keep you posted on progress.Patricia
Hello Ranner,
Based on our recent experiences we have decided to have PDT in a private hospital.They have now finalised the details for Phase III Study Photostent 2, so that it looks set to start at the end of March Details of this study are posted on the National Cancer Research Network website.
Because of the rarity of this disease they may be open to registering people who in the EU like Denmark. Why not give it a try?
best wishes
Patricia
Thank you for the adress info.
How is your husband doing and how are your plans now? Has he had the PDT yet.
Looking forward to hearing from you.
Best wishes Randi
patricia,
I am sorry to hear that the hospital were not able to provide an adequate standard of post op care, are you NHS or private? – I would have thought that private would be better..
I admire your husbands strength and determination to gain some control over this – I think that it is all too easy to allow the conventional medics to take over – and in the case of cc chemo is undeveloped and so hit and miss.. my dad is reluctant to try chemo, he has been told that there is only a 20% chance of chemo working and if he goes down that road it would severely limit what he can do in the time that we have.
It is a difficult decision to make, and we feel so helpless, I suppose that all we can do is support them in any decisions they make and keep searching for hope.
Best wishes
Jules
My husband should have had the PDT last week but was not happy that the post procedural care was good enough. After they inject the dye you have to avoid bright light. He is in a brand new hpspital and it is full of light. They put him in a south facing ward with light streaming in all afternoon and the only protection he would have had would have been a thin curtain. He would have had to stay in that space for seven days in total. He didn’t feel there was enough protection and they didn’t have a single room to give him. He wasn’t prepared to take the chance that he would maybe be burned. By that time he wasn’t eating anything was getting depressed and had lost 3 kgs, so he checked himself out .
I don’t know what we will do next. He will have a stent put in and they will probably do the PDT at the same time.
WE are going for 5 days to the Bristol Cancer Centre for alternative treatments and to kick start our fight back against this disease. My husband is firmly of the opinion that the most potent way of him dealing with this illness is through his own actions and therapies that empower him to build a stronger immune system . As yet we have refused chemo and will probably make a decision when we come back from Bristol.
Two centres in the UK are carrying out PDT for cholangeocarcinoma:
Mr Steve Perriera at the University College Hospital in London. They will be recruiting for this trial (Stage 3) very soon.Mr Ian Tait at Ninewells Hospital / Medical School in Dundee, Scotland.
In Europe;
AMC Academisch Medisch Centrum
Meibergdreef 9
1105AZ Amsterdam Zuidoost
Tel: 020 5669111Also Nantes in France (google for further details.)
Hope this helps.
Best wishesPatricia
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