ron-smith
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Prof L
I think anything that raises the profile of cholangiocarcinoma within the NHS must be a good idea. It also makes sense to assemble expertise in accessible national centres. I do, however, share Kris’s concern about the position of patients in Scotland and Northern Ireland. If the optimum number of centres is only 2 then to double the required number will make it extremely difficult to properly staff and fund the centres.
My own case was referred to you by Mr Powell at Edinburgh Royal, but unfortunately, you did not believe you could help me. I do not know if that referral would have been possible had I not been aware of you and your work. So perhaps more information could be made available within the various cancer and liver centres in the UK.
Kind regards
Ron Smith
Hi Jeff
I am probably teaching my granny to suck eggs, but I found this article quite interesting.
http://www.cancerhelp.org.uk/help/default.asp?page=314
Hope it all goes well for you.
Ron
Hi Jeff
I was interested to read about your hiatal hernia. After I had received the diagnosis of CC my GP told me I had hiatus hernia, in a “throw away” line. It was as if he knew I had been suffering from it for some time and assumed I obviously knew I had it. I thought I just suffered from indigestion. I have had no treatment or medication for the hernia but still feel I get bouts of acid reflux. Or, could it be the bile not draining properly? Reading your comments has reminded me to raise the subject with my GP.
All the best
Ron
Pat
I can understand why you are so angry. In my opinion, there is no justification for your mother’s physician not to be truthful and frank with her, unless he had been told by her that she didn’t wish to know. Otherwise it is not his decision to make. I would be livid if I found out that information was being withheld from me, particularly if that meant that I could not organize the remainder of my life the way I wanted and be able to put everything in order. Of course that takes no account of any delay now in your mother having treatment. This is probably not the right time to do anything about it but I do not think this matter should be left. I think I would certainly wish to find out if this is the hospital policy or, more likely, the physician’s own view.
All the best
Ron
Hi Pat
That must have been devastating news you received about your mother’s latest CT scan. I would have to say, however, that I am really surprised to learn that her physician lied to her about the scan. My experience, and I think that of most members here, is that the doctors may not have all the answers but generally do not hold back from telling how things are. They may not rellish giving bad news but they certainly do it. Was anyone with your mother when the physician spoke to her? Is it possible that she didn’t want everyone to know the bad news so that she could have her holiday with your father without everyone worrying?
All the best
Ron
Hi Michael, welcome to the site. It is just a pity that you need to be here. As you are aware there are few of us from the UK. Where are you from and where was your surgery done? Great news that your surgery has been successful that is a major step forward. Keep positive for the future. I had not heard about a new blood source, what was involved in that?
The chemo question is a difficult one. If you read my posts you will see that I have had two resections. After the first there was no chemo but after the second I was started on a clinical trial with Xeloda. However that only lasted four days as the Xeloda brought on an angina attack and I had no idea that I suffered from angina. Given the choice I would accept chemo, radiation, in fact anything, after the surgery. But in the UK, certainly, there appears to be a reluctance to do anything beyond the surgery. It will be interesting to see if the clinical trial proves there is a benefit.
All the best
Ron
Hi Sue, glad you and your husband have found this site. There are not many of us from the UK. Where are you based?
There certainly seems to be a “leave well alone” attitude amongst the cancer specialists in the UK as this is what is happening to me as well. I was first diagnosed in July 2006 and had surgery to resection the liver and bile ducts in August. The tumours reappeared in February 2007 and this time the whole of my right liver lobe was removed. Multiple tumours were found in Sepetember 2007 but this time surgery is not an option. I expected to be given chemotherapy and radiation straight away but the view at the cancer centre in Glasgow is that there is no treatment that will do any good at this stage and so while I am keeping well and have no symptoms I should have no treatment. The rationale is that any treatment could make me feel worse and is unlikely to have any positive effect. I attend the centre every month and they do blood tests and that’s about it. If I start to have symptoms then they will look at palliative chemo and any new treatments that may be available then. It is a strange siuation because I feel something positive should be done now but, by the same token, I would not want to start something that could put my health into decline.
I hope you and your husband continue to get good news and are able to pass it on to us for some time to come.
All the best
RonHi Patti
I am the only one I have heard of who has had a reaction to Xeloda. I started taking it on the Wednesday and by Saturday I was in Hospital with a severe angina attack. Now I had absolutely no history of heart problems and of course, when I was previously in hospital for the 2 resections I was hooked up to all sorts of monitors, again with no sign of a problem. Anyway, I ended up having angioplasty and stenting. Amongst the paragraphs of possible side effects it does say that in rare cases taking Xeloda can lead to a heart attack. I guess I was just very lucky??
All the best
Ron
Hi Kris
Always good to read your posts. I am feeling fine. As I wrote the other week, I am no longer in line for any more surgery and am being looked after by Prof Evans at the Beatson in Glasgow. I think I mentioned to you that this is a brand new facility in the grounds of Gartnavel. I am not displaying any symptoms and the Prof does not recommend taking any action hile this is the situation. He is not even that keen on me having scans but I think I have persuaded him to change his mind on that one. I am just waiting for an appointment. I found that whole attitude at the Beatson quite strange and a bit worrying since all the time I had been attending Edinburgh Royal there was always something being done or planned. But now I am feeling more relaxed about it. Having read so many stories written about people who have had various treatments which have not really been successful I think it may be a good idea to leave things alone for as long as possible. Anyhoo, time will tell.How are you just now? I have always followed your adventures and see that you are currently off the transplant list. That must be really draining to have your expectaions built up then dashed repeatedly. How are you feeling about t/p? I just can’t get my mind straight on it. It seems such an obvious course but there seem to be so many real problems with it. At on statge you thought you might be able to get back to Edinburgh. Has that fallen through? Edinburgh Royal was in the news a couple of weeks ago after having successfully performed their first live liver donor transplant. I thought they had done them before but apparently not.
I hope you manage to get back over to Scotland soon, it’s still a great place to be. Take care.
Ron
The Whipple procedure is used in the treatment of cc where the tumour is at the bottom half of the bile duct.
This link should give you more information:
Ron
Hi Patti
I found your post very interesting since I am experiencing very similar thoughts just now. I was diagnosed with ICC in July 2006 when I had an ultrasound scan for suspected gall stones. I had a partial resection of the right lobe and removal of the gallbladder in August 2006 but the tumours returned and I had the full right lobe removed in March 2007. Again the tumours returned and I have been told there are no further surgical options available. I have never had any symptoms and basically live my life as normal. The only chemotherapy I have had was as part of a clinical trial but this only lasted about 3 days because the drug (Xeloda) brought on an angina attack, which eventually required angioplasty and stenting. I am now attending the oncology centre in Glasgow and their advice is not to start chemo since I am feeling well and to wait until I have symptoms.
At this stage nothing apart from palliative chemo is being suggested as anything else, including pre-emptive chemo, is likely to cause more damage than it can heal. Interestingly, they are also not very keen on giving me CT scans. This I have found strange but their reasoning is that there is no benefit to me knowing that the tumours have increased in size or number if I still have no symptoms. I can understand that to a point because you do get depressed if the scan shows bad news and that cannot do you any good. So I feel as if I am presently feeling fine, know bad things are happening inside me, but doing nothing about it until I am unwell, by which time it may be too late. I feel I should be doing something positive now but at the same time am scared to tamper with things. I have persuaded them to give me a 6-month CT scan and will keep my fingers crossed that it does not give a depressing result. Should I have bothered with the scan? It is difficult to know what to do for the best.
All the best
Ron
Hi Kristin. I agree with Peter, this is a great post with plenty for us all to think about. What is energy healing? I can’t recall ever hearing the expression. The exercise is good, but I would break out in a sweat just thinking about running for an hour. I do enjoy walking though. I could certainly manage the chocolate!
Ron
