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I was surprised to hear that your father had a resection because my husband had CT scans laparoscopy and MRI which showed that the lungs, liver, pancreas, gall bladder and the peritoneum were all clear. On that basis they decided to operate but once they looked inside the abdominal cavity they saw that there were ‘deposits’ on the omentum. (The covering of the small intestine) They were malignant and they decided that they could not proceed further since there was a spread. They told us the only options were palliative.
When did your father have the operation?
After my husband’s operation, he had to have another procedure to open up the bile duct which was still blocked. After that he was SO ill. He couldn’t eat or even drink anything he was weak and very nauseous. That lasted for a few days. After that he had no appetite and we had to take food into him twice a day to try to get him to eat. This lasted for about three weeks. Once he came home he was much better and has slowly regained his appetite. Now he eats normally.
When he first came home I was worried about his loss of weight and I phone Cancer options UK. They told me that he could be suffering from Cachexia and sent me the recipe for the drink. I will email it to you. He has this twice a day plus a lot of juiced vegetables and various supplements I have read about.
I don’t now if my husband would even contemplate another operation even if he was told that it was possible. I was interested to hear about your father’s friend who had pancreatic cancer, because that also has a poor prognosis.
My husband left hospital on the 13th Dec and we have spent all the time since then trying to build up his strength. He is still very thin (previously he weighed 12stone now he weighs 10.2) but he is gaining strength. This week we went for Chinese and today he did some time on the exercise bicycle.
WE don’t know what is happening inside. He will have another scan soon and we will get the results of the latest blood tests.
I wish you all the best and I hope that ypour dad’s appointment goes well tomorrow. I’ll be thinking of you both. Please post tomorrow and let me know how he is.
All the best
PWE saw the doctors this week and we have been offered a place in 2 trials. One for photodynamic therapy and one a chemo trial. The PDT looks promising and since it is non-invasive we are definitely interested in this. I spoke to someone who works for the pharmaceutical co that manufactures the dye they use in PDT; he says that there are many centres in Europe that use this technique with colangio and it is effective in shrinking the tumour. In the US they use it less.
We are also looking into lifestyle issues though now my husband has much of his strength back, it is difficult not to fall back into old habits. He spends time talking to work and we are putting off things that wqe should be dealing with.
He is very calm and hopeful. He was four and half weeks in hospital and was very poorly. Naturally he is not keen to go back again. he has lost a lot of weight and several people have told us he will never regain it. I was recommended a high calorie drink that he has two times per day; cocnut milk plus almond milk with Whey protein and glucomine, which build muscle and I mix it with a banana. It is high energy and high protein which counteracts the muscle loss. He has gained a little weight and is eating normally.
We are going to have another scan to see what the current situation is. In the meantime we just take every day as it comes.I looked up the reference to Stephen Jay Gould and Iam posting it below since it is such a positive message :
In July 1982 Gould was diagnosed with abdominal mesothelioma. He later published a column in Discover titled “The Median Isn’t the Message,” in which he discusses his discovery that mesothelioma patients had only a median lifespan of eight months after diagnosis. He then describes the research he uncovered behind this number, and his relief upon the realization that statistics are not prophecy. After his diagnosis and receiving an experimental treatment, Gould continued to live for nearly twenty years, until his death from another, unrelated type of cancer; a metastatic adenocarcinoma of the lung. The column has been a source of comfort for many cancer patients.I agree that you certainly don’t need all this negativity from the doctor. My husband is very much against knowing the statistics of this case. He takes the view that he is an individual and not a statistic. when we saw the oncologist this week I asked my husband -Do you to know the difference between survival rates with or without chemo? and he said No.
I have read that when there is a resection there is often follow-up treatment of chemo to make sure that the wound margins are completely free of any residues of the disease.
Several things I have found helpful:
The current view is the no cancer is cureable, the objective is to manage it so that the individual can live a relatively normal life. In that respect it is like AIDS. no -one recovers but many people live ‘normal’ lives and keep the disease under control. All of us know people who are living with cancer and in fact everyday on the street we pass people who are living with the disease and don’t even know it.
Secondly if the survival rate is from x to y on average that means that some people will be on the extremes. Some people will die withing days/weeks of diagnosis and others will live way beyond the upper limit. That’s the nature of averages. We believe that by taking a strong active approach, my husband can be on the upper end of the average and we are working in our lives to achieve that.
I can strongly recommend a book by Rosy Daniel who used to be the head of the Bristol Cancer Centre; it’s called the Cancer Directory. She sets out all the resources that are available within the UK, both orthodox and complementary. She places great emphasis on ‘health creation’ once the orthodox medics have completed their job, e.g. counselling, nutritition, relaxation etc and we are now starting down this route.
The most important thing is to be in control and not feel you and your dad are at the mercy of others; take control & take responsibility – that alone is a step in the right direction. Ask for another opinion, your GP will refer you to another doctor if you ask.
What I have found is that we have experienced ups and downs but we try throughout to see it as our responsibility. When we heard the info about the chemo my husband’s response was – ‘Well that confirms what we thought, we have to beat this ourselves!’
To paraphrase a poster my daughter used to have on her bedroom door (My room, my mess, my business!)
MY CANCER, MY BODY, MY BUSINESSAll the best to you and your father,
PatriciaAlex,
You seem to have had a good outcome from your treatment. How are you feeling?As I understand it you had four drugs together every two weeks. Were the side effects very severe? Are other people with your condition on the same regime and is it effective for them?
The disease in the liver in stable and all metastatic cancer had gone. What do the doctors say you can expect from here on?
I am very interested to read about your father’s experience. Did they give you a reason why they couldn’t remove the tumour. Was it because of the position? Did your father have scans to establish that there was no spread from the bile duct? How is your father doing now?
In my husband’s case when they started the operation and looked inside they found that there was also cancer on the covering of the bowel so they decided since it had spread they couldn’t proceed.
We were treated at the Royal Free in Hampstead and have now been transferred to University College Hospital. We thought my husband was going to have PDT but the consultant says that he can only have the PDT if he is part of a clinical trial, so there is only a 50% chance he will be in the PDT group. We asked if this treatment was available anywhere else privately and the doctor said no. Tomorrow I am going to ring the London Clinic, the Wellington and the private wings of the major hospitals to confirm that this is so. Though the consultant says there is no evidence that PDT makes a significant difference with cc, it is non-invasive and there are few side effects. My view is that nothing can be lost by doing it, so why not try. I would appreciate it if anyone on this board can offer any information about where PDT is available in UK, Europe or the States.
We have been offered a place in another trial for chemo – gemcitabane alone compared with gemcitabane plus oxyiplatin. WE have’nt made a decision yet about what to do next. I asked the doctor about some of the drugs I have read about here – like Avestin, and generally they were not encouraging. Their view is that since cc is so rare everyone is ‘experimenting’, whether they call it that or not.
Is you father going to have chemo? if so what? is he going to continue with the treatment in Leeds? I would like to hear how he gets on and I wish you and your family all the best.
Patricia
