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There is a clinical trial starting in the UK at University College Hospital in London. We have also researched availability in Europe.
It is also available in France and in Holland. If you like I can send you the addresses.PDT is not a cure but it has the effect of shrinking the tumour sufficently to allow bile to drain, because as the oncologist pointed out to us, it’s not the tumour that kills but the effect that it has on the liver when bile and other toxins cannot drain.
It seems to be a urinary tract infection.
In a way I knew it. he started the shivering last Thursday and it was obviously something causing his temperature to rise. When he was in hospital as soon as his temp went up even slightly, they put him on anti-biotics. He had another shivering attack on Friday and I phoned my GP to get anti biotics just in case he had another attack over the weekend.
He didn’t but yesterday he had two attacks. He started on the anti biotics yesterday evening, so hopefully there will be no more attacks.
When he came out from hospital the GP recommened taking his temperature every morning. If his temp was raised he told us to take a sample of urine to the surgery. I did that yesterday. They tested it at once and told us he had an infection and told us to take anti biotics.
In the meantime I read that it could also be a sign of an infection in the bile ducts.
So now my husband will take his temperature every day so we have some warning if anything is happening. I think everyone should be advised to keep an eye on their temoperature as a sign of a pending infection and take anti biotics to guard against infection. With a compromised immune system early warning is vital.I have often thought the same myself. my husband will have PDT which shrinks the tunour slightly so that the ducts are clearer and able to clear the liver. As the oncologist so bluntly put it, what kills you with this disease is the fact that the liver cannot function because the ducts are clogged, – so anything that helps keep the ducts clear is useful. I asked the doctor ‘If it shrinks the tumour why can’t you keep on doing it until it disappears? His answer was unclear and not really convincing. something to do with the fact that there are important blood vessels in the area?
That sounds like a very punishing regime. Has she started already and how is she reacting?
I wish her well and I hope that you are successful with this treatment.
Please keep us posted. All information is useful.Hi Jules,
He’s had a very busy week with lots of visitors and activity. It tired him out and in future I am going to keep a very close eye on the level of activity. He needs more calm and stillness in his life. This week has been quite busy; we saw the oncologist on Wednesday and we have decided not to enter the trial of gemcitabane vs gemcitabane and cisplatin.
My husband hasn’t had a scan since Oct when he was diagnosed and they offered us an appointment mid March. I was so shocked at the time lag, I didn’t even bother to argue. We have decided that the NHS simply cannot deliver the level of service and we are going to look for private treatment. Today we are going for an appointment to have PDT hopefully to start next week – but I have got so used to delays and disappointments that I am not going to get my hopes up too high.
We are planning a visit (and stay) at the Bristol Cancer Centre. My husband is a very spiritual person and he believes that the body can be geared up to fight its own disease. WE watched the video from the centre together and unlike so much else in this field the messages are positive and hopeful.
It’s good news that your dad is putting on weight. i wish I could see some change in my husband. As for exercise he tries to do some at home but doesn’t like going out in the cold – and it is very cold in London at the moment.
Patricia
My husband is living a more or less normal life except that he is not going into work. he is in contact with work by phone and email, talks to friends, puts his affairs in order, yesterday he went to lunch with a friend and then to Costco. Yesterday evening we had dinner with friends and he was just as normal. Only problem is that he can’t sit still for too long as he has no flesh on his bum and quickly gets uncomfortable.
My husband is almost the opposite to your father, in that he seems to want to pretend that because so many things are ‘normal’, nothing is happening. This morning he made a comment that he wasn’t gaining any weight despite the fact that he is eating very well. That clearly worried him. Last night our friends told us a the son of one of their friends is evaluating all the research on chemotherapy and cancer. Surpringly despite all the trials it appears that the data has not been systemmatically evaluated. They mentioned my husband’s case to him and he said – PDT is proven to be effective and (more important given the tendency for my husband to bury his head in the sand) he also said, Don’t hang around waiting for the NHS to get its act together, move as quick as you can’. This seems to have penetrated my husband’s consciousness and we have now decided that feeling well is not the same as being well, and we have to act. We are seeing the oncologist on Wednesday and will make a decision about chemo.
WE are now looking to get PDT in France. We have a good friend there who has been treated for bowel cancer . WE have sent his oncologist our info and are waiting for a reply. There are several centres in France that perform this treatment.
WE have the video from the Bristol Cancer Centre and this morning we are going to watch it to see if we want to go there for a few days and deal with this illness in a body/mind context. My husband is a very spirtitual man. He is totally convinced that the disease arose because of his psychological and mental situation. he thinks he made himself ill and he believes he can make himself better.
I work from home but I have other people who work with me so I try to keep a separation between work home. We are moving into other offices soon because it is not really suitable, should my husband become more ill to be at home. We are lucky in the support we have; I have three grown up children who are very supportive. Luckily all of them are now close to home, my daughter moved from Bristol back to London once her father became ill. We have good friends who have cooked for us, people visit during the day and my husband is in touch with many friends throughout the world – thanks to the wonder of SKYPE.
Are you an only child Jules? Your father is lucky to have you work so hard of his behalf and I am sure it makes him feel loved and valued – which is an important element in healing. last week I read the comment of a well kown oncologist asked what distinguishes those who survive cancer from the rest. She said –in a word Love. The people who do well are surrounded by others who care for them and show it. I know you are looking desperately for a medical solution but in a way even if there is no guaranteed medical solution, the efforts you are making on his behalf and the time you spend together are what counts.
Good luck to you and you family,
PatriciaFrom Novartis Onclogy newsletter
Regression of hepatocellular carcinoma during vitamin K administration
An 85-year-old man with HCV infection and diabetes mellitus was diagnosed as having hepatocellular carcinoma (HCC, 13 cm in diameter) based on high serum alpha-fetoprotein (AFP), AFP-L3, and des-gamma-carboxy prothrombin levels as well as typical enhancement pattern on contrast-enhanced CT. The patient did not receive any interventional treatments because of advanced age and the advanced stage of HCC. He chose to take vitamin K, which was reported to suppress the growth of HCC in vitro. Three months after starting vitamin K, all three tumor markers were normalized and HCC was markedly regressed, showing no enhancement in the early arterial phase on CT.
World J Gastroenterol. 2005 Nov 14; 11(42): 6722-4
Dr William Steward
University of Leicester
Nurse contact; Liz Andrzjchewski
0116 258 5998
Stage 3 trialHi Jules,
There is a trial going on in Leicester under Prof Stewart, one of many trials world wide. I will post the number of the research nurse later in the day. I am at work now.
Did you father manage to make an appointment to see Dr Cunningham?
How is he generally?
Patricia
Thank you Kelley and Jules.
Yesterday evening he took his temperature, it was 38 and this morning it was 36, so it seems that yesterday he had a slight temperature which seems to have gone today.My GP told us to take the temperature every morning to get some forewarning of infection and get anti biotics to deal with it asap.
My husband’s tumour is small. 2cms on Nov and he has metastatses on the omentum.
Does anyone know the speed at which these tumours grow or is it different for different individuals?I wish everyone well and appreciate your comments and concern.
Patricia
Jules did you get the recipe?When my husband – who is 66 came back from hospital, we ignored the issue of diet – a lot of cancer diets involve raw vegetables and little or no fat or protein – and simply concentrated on building up his strength and I hoped his weight. He has gained a little weight but not much but he is much stronger. He doesn’t have any dairy products or beef, very little lamb and once or twice a week chicken or turkey. We try to eat a lot of fish especially oily fish. He tries to eat protein and vegs, carbs and veg but not mix carb and protein; we don’t always stick to that regime. he drinks coffee and tea but only in the morning.
When he first came back I phoned Cancer Options UK and spoke to someone there. It was she who gave me the recipe for cachexia – which I will include in the body of the email next time – saying that although it is not in line with many theories about what cancer sufferers should have, it was more important to build him up and get him back to normal. I agreed with her and I think in this respect at least, it was the right decision.
We have porridge and toast every morning. I add something called Linusit to the porridge it is flax seed which is very good for him – as is omega 3 and 6. When he was first back I would make pancakes and french toast for breakfast, because they were fried (calories) and the eggs had protein and he likes pancakes. Only soy milk to drink. Lunch we would have starch and veg – lots of veg / salads and in the evening protein – usually fish and often fried with soup for starter and fruit for dessert. (I have put on weight even if he hasn’t!!!)
Mid morning I would make the high protein high energy drink he would drink one in the morning and one later in the day. Every day I make a juice with carrots celery beetroot and red/yellow peppers. (sometimes with parsley or watercress) which is full of anti oxidants. Over the weeks his appetite had increased and last week we were able to eat out at a chinese restaurant.
Before the diagnosis when he lost his appetitie completely, one of the few things he could eat were carrots and I have read that carrots are very good for the liver.
Interestingly my husband was at university in Israel and the incidence of this disease there is higher than in other countries – and my gastroenterologists said it is also high in Eygpt.
We are now trying to decide whether or not to have the chemo on offer. I think it will pretty much depend on what the next scan shows.
best wishes to you and your dad
PatriciaI did send the recipe but from an email I use for signing up, where I suspect that I might get a lot of spam. The sender name will be Andrew Vaughan, which is not my name –or gender for that matter!!. Perhaps you thought it was spam and deleted it. I will send it again after I finish this post.
X119 is another chemo trial which is being run all over the world. Pref Stewart in Lecicester is in charge of the trial here. If you google X119 you will get the links. If I have made a mistake I will check it out (I just did a check and I have the details wrong. I’ll look it up in my file and post later today.)
We have an excellent GP. He comes to visit my husband once a week and even went to see him in the hospital. Incidentally he says that in over 20 years of practice this is the first case of cc he has seen. We had a reply from Dr Cunningham saying he can offer no more than we have been offered at the Royal Free. I guess he gets lots of letter like the one we sent.
Some good news today; the blood tests taken last week were all more or less within a normal range. That makes me feel hopeful and gives me confidence that something we are doing may be the right thing.
I’ll send the email again now. and get back to you later with the trial info.
Best wishes
PMy husband has what they call internal-external drains. Narrow tubes that were inserted from the outside under the skin and through to the bile duct and opening up the duct to drain into the intestine. The bile is draining and the jaundice has practically gone. We are waiting for blood tests to see the level of the bilirubin. There are also drains on the outside of his body. These will be used for the PDT. Usually they use an endoscope, but since they were inserting drains they decided to leave two capped off drains on the outside of the body. The PDT is more effective the closer the light source is to the tumour so they will insert the light source from the outside and cover the tumour. (At least that’s what I understand.)
Today I am going to hurry them along . he needs another scan to see if there have been any changes since Nov and also I would like to see the blood tests, to see what is happening there. In the meantime because he is generally in good form we do have the feeling ‘If it ain’t broken don’t fix it’. but we know we have to fix it.
As I understand it with your dad, he has had a resection and the option of chemo is just to be doubly sure, – to make sure that there are no traces. Is that right? Once you start a treatment if it has too mnay side effects you can always pull out and if it is just to ‘mop up’ rogue cells then the treatment might not take a long time. Whatever the case, I agree that the doctors are not much/any wiser than we are. I told the oncologist about a trial at the University of Leicester for X119 and he didn’t even know about it.
Also, I have a fantastic GP – who used to work at the Marsden, he said to me to take what oncologists say with a pinch of salt. He thinks by prefession they have to be optimistic and they tend to minimise the side effects of the various drugs they prescribe. Talk to other people who have first hand experience of these drugs if you possibly can.
Did you get my email with the recipe for cachexia?
P.
I’m really pleased that your father has some more optimistic news.
I am interested in what your oncologist said about sticking things into tumours helps spread it. My husband had four attempts to penetrate the tumour to open up the bile duct. I must say that I thought surely that can’t be good but his bilirubin was up to 600 at that point and I guess they didn’t have a choice.
Prof Cunningham is very well known in this area. My GP has contacted him to ask if there are any new approaches to cc and we are waiting for a reply, in the meantime we are waiting for the PDT trial.
My husband is still in good form and eating well. He is of the opinion that to get better he needs to address lifestyle and emotional issues.
Patricia
