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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.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
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.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
Jules,
Is the oncologist Prof Cunningham at the Marsden? If so you have to take what he says on board, since he is one of the leading hepatobiliary oncologists in the UK.CC is not like other cancers , say breast cancer where there is a well established protocol for treatment. They can say with a degree of confidence that although the treatment is tough and the side effects bad, nevertheless for a very large percentage of patients there will be long term remission.
My husband is starting with PDT today. He will have the PDT on Monday (injection today) and on Wednesday will have a stent inserted. A doctor from Kings told me he has a patient who is having his fourth treatment with PDT and is 4 years post diagnosis, which is a good outcome with this disease.
There are other non-medical treatments, usually based on diet and supplements. They require a significant change of lifestyle but they can have excellent results. There is also a non-medical equivalent of chemo (Ukrain). One of the participants on the Bristol Course was one it. She says there is an 82 year old woman who has been having the treatment for several years and is still alive. (I don’t know
what kind of cancer she has)The principal of alternative therapies is to build up the natural immune system (Natural killer cells which we all have ) so that the body itself can hold the cancer at bay for longer. Problem with chemotherapy is that it also destroys the natural immunity of the body and it is self limiting.
If I were in your shoes and your dads, I think I would make some life changes and monitor the development of the cancer very closely. Assume the best and enjoy each day.
Easier said than done I know but the alternatives are not great either.
Patricia
Thank you JUles.
At the moment my husband is in good form, eating well and sleeping only once during the day. His weight remains the same although he does look better. Today we went for a walk in the park and he found it quite difficult. He hasn’t really taken any significant exercise since he became ill and he feels the lack of it. We will have the PDT next week and a metal stent will be inserted at the same time and his biliary tubes internalised. That will make him feel a lot better; he is longing to have a good soak in the bath! He will have a CT scan and blood tests on Thursday and we will see what has been happening since November when they last did scans. Feel rather nervous about this but am hoping for the best.How is your father doing? did he decide to have the chemo? I spoke to a radiologist this morning and he made several good points about chemo. 1. They only give chemo when the patient is strong enough to deal with the adverse effects. 2. Chemo is effective against cancer ‘seeds’ which are not visible on scans and they are nipped in the bud by chemo which is systemic. 3. Gemcitabane is widely used and well tolerated.
What he didn’t say (but I have said to my husband) is, –if you start the treatment and it makes you feel lousy, you can stop it! if you are one of those people who can tolerate it well then there will be advantages to you.’
In the meantime we will wait to see how things have developed.
There are some areas where there is agreement, for example the benefit of antioxidants which can either be in tablet form or in juices. My husband has a juice drink (carrots, parsley,celery red pepper, beetroot ginger) in various combinations.
He also takes a build up drink for his severe weight loss, which is not in line with much of the thinking about cancer nutrition but makes him feel he is staving off further weight loss, which worries him greatly.My husband takes food supplements including antioxidants, Co-enzyme Q10, IP6 AHCC, milk thistle and vitamin K. Since he left hospital on Dec 13th after an an operation to do a resection was aborted, he has had no treatment. He is feeling fine in himself although he does get tired.
With this particular cancer very little seems to work and when there are improvements they are often short lived. My feeling is that we will try anything that has been shown to have a positive effect, because noone can offer us anything that is certain to work. .
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
My husband has lost an enormous amount of weight.
Cancer Options UK gave us this information and recipe for weight gainResearch has shown that the most effective method of stopping the cachexia (severe weight loss associated with cancer) becoming a major problem is to take high dose fish oils, a mixture of both omega 3 and omega 6, in as high a dose as you can manage. There is also a drug called megesterol, which has been shown to be the most effective drug in helping cachexia, if you have not done already, you might consider having a short course of steroids, which will increase your appetite, and your energy. You cannot stay on them for too long, but they rarely fail to improve the situation.
Smoothie Recipe For Weight Gain
Glutamine 3 capsules (repairs muscle and gut lining)
Whey Protein Powder 3 tbsp (builds albumin, supports the liver)
Colostrum (Lacto ferrin for immune function) capsules, open and sprinkle contents in. According to manufacturers dosage, according to whether it is powder or capsules etc. Suggest up to 4 capsules a day
IP6 Powder 3 tspns. Excellent anti-cancer properties
Add any of the following, whichever is easiest to obtain
My mother died when she was 80. One month before she died we all went on holiday together and although she was tired we enjoyed the whole trip. One week after returning she was diagnosed with lung cancer which had spread to her liver. Within the month she died. She had a degree of discomfort when they thought they could ‘help’ – in the early stages and then only palliative care. She died quietly without pain with family around her.
A quiet pain free end, after a full and active life with many loving family members around was the kind of death she would have wanted. In fact when they were trying to treat her by feeding her with a tube through her nose when she couldn’t swallow ( a totally horrible experience) she said ‘I know you love me but I don’t want to live if this is how it will be’.
I hope that this is some consolation to you at this very difficult time. Your grandfather seems to have had a good life, he is loved and will be missed by many people – that is a measure of him. My thoughts are with you at this difficult time.
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
How is your dad now Jules?
Has he regained his strength and his spirit?
It is impossible to know what to do for the best. There are so many possibilities and many of them have side effects which have a very negative effect in the short term which cannot be good for healing. On the other hand the principle of deal with the tumour when it starts and is limited, is very important.Whatever you decide to do I hope it works out well for your family.
Patricia
My husband was offered a part in a trial where gecitabane was compared with gencitibane plus cisplatin. This is a stage 3 trial. Our nurse specialist who was the research nurse on stage 2 , strongly recommended that we not take the combination since there were significant side effects. (My GP concurred) whereas the gemcitabane is (in the jargon) ‘well tolerated’.
If my husband decides to have any chemo, he will only have the gemcitabane. The advantages of the two together are by no means proven.The regime proposed at the Royal Free for gemcitabane is weekly for three weeks and a week off, for 3 months assuming that the effects are positive on shrinking the tumour.
Hi Jules
Last week my husband had an attack of shivering (rigors) it lasted about 20 mins; his feet were really cold and even with all his clothes on and two duvets and a hotwater bottle, he couldn’t stop shivering. He had another attack the next day. he takes his temperature every day and his temperature was up (37.5 – 38 so not really high). On Monday he took a urine sample to the GP surgery, they dipsticked it immediately and said he had a urinary infection and he started on anti biotics.
At the same time, his appetite which has been good, started to decline.We decided on Thursday to go to A & E since his temp was still high and they admitted him to hospital. He is at University College Hospital. Yesterday they changed his drains – he has internal external drains and they said that he probably has the beginnings of an infection in the bile ducts – from the ‘sludge’ that accumulates in the drains. His bilirubin which was 30 two weeks ago had gone up to 60.
He is still in hospital and will stay there. He is quite cheerful although he cannot take hospital food. If he is well they will start PDT treatment on Tuesday and he will be home at the weekend. I will keep you posted on how it goes.
How is your dad? Is he gaining weight and how are his spirits?
