ron-smith
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Hello JoAnn
Jeff has given you an excellent description of what many of us have, at least partly, gone through. He has also given you the best advice – be positive and learn as much as you can so that you can help your husband be his own advocate. It is not easy sitting through consultations, particularly if the doctors use technical jargon. So it is very helpful to have some knowledge concerning what they are talking about and to have prepared questions about your husband’s condition and treatment.
On a positive note the doctors looking after your husband certainly seem to be on the ball. It is very rare to hear that someone has had surgery and then is being given chemo and radiation treatment as part of the standard treatment. It is quite natural for you to be wondering if there is better treatment available elsewhere and to have self doubt about whether you are doing your best. My advice to you would be to try to relax and enjoy the progress your husband is making. Learn as much as you can about his condition, primarily by talking to his doctors but also by researching the internet and of course, using this site. Build up your strength because, like anything else, there will be difficult times ahead as well as good times and you will need to be strong mentally as well as physically. But above all, be positive.
Dear Andy
I am so sorry that the you received such disappointing news. You are doing the right thing by speaking to the medical people and taking on board what they are advising. Good luck with your inquiries into chemo treatments. I believe that the UK health service is a bit like a small village in that everyone is very aware of who is doing what in their particular field. So keep asking about different treatments. The biggest problem we have is getting treatments that may not yet be fully approved because of budget restraints.
All the best
Ron
I have just read this article in The Scotman newspaper about a girl in Australia who received a liver tranplant. The difference here is that her blood type change to the same type as the donor meaning that she does not require drugs to stop rejection. Doctors do not know why it happened but are now trying to find answers. As they say – it is a long shot, but it is a positive step.
http://news.scotsman.com/latestnews/Transplant-girl-who–has.3710635.jp
Hello rjoday
Very sorry to read about your mother but glad you have been able to find this site.Transplantation is one of the vexed questions surrounding this cancer. I received an excellent reply to my question on it from Gene on 12/24/07. This can be found under Introductions.
I am noticing that there have been more postings here about transplantation recently and so perhaps there is a change in thinking about it in the USA. However I think the problem with the immunosuppressant drugs remains the major problem.
Hi Tom
I have had 2 resections in Edinburgh and did not undergo embolisation. On each occasion it was literally a matter of going to the hospital one day, having surgery the next day and leaving hospital 4 days later. The remaining liver grows to fill the void and I believe it takes about 2-3 months. As I understand it, the chances of liver failure are greater the more liver has been removed but becomes really critical when 80% or more is removed. Other factors have to be taken into account, for example, age and general health.
All the best
RonCandy
The main question to be answered is what is your brother’s wish? If he is not well enough to make that decision then I would worry that he is strong enough to successfully come through the surgery.I am one of the people Kris referred to since I have had 2 resections and in both cases was out of the hospital 5 or 6 days after surgery. The first was a partial resection of the right lobe and the gallbladder. The second was the full removal of the right lobe. The second surgery itself lasted about 50% longer than the first and I was an extra day in hospital. However, in both cases I had no obvious symptoms and was really quite fit. Be in no doubt this is major surgery and recovery time after hospital will be months rather than weeks.
Ultimately the cancer has returned within months of the surgeries. Would I go through it again? Most definately, since it still remains the only real hope of a cure. However, neither my previous surgeon nor the eminent surgeon who provided a second opinion will consider further surgery or ablation. They do not think they can remove all of the tumours and so they will not be doing the best for me. I am therefore a little puzzled that your brother’s surgeon is willing to do the surgery but doesn’t think it will do any good.
My biggest fear prior to the second surgery was that the surgeon would start the operation, see that things were worse than he had thought, and just close me up again. I do not know how I would have been able to cope with that. Now I have accepted (well, 95%) that it is not an option and I can start looking at other treatments. I find it important to always have new possibilites available; it makes me feel more positive. Your brother will probably be the same so try to stay positive yourself and be optimistic about other treatments that may be offered.
Ron
Hi Amilcar
This may help to settle your mind a bit. I saw my oncologist on Tuesday and it was decided that I would receive palliative chemo when I start to get symptoms. Things to look out for were jaundice, loss of weight and appetite and unusual pains. He said the pain part was the most difficult to recognise since it is important to differentiate from all the normal pains and feelings of discomfort that we all have. I get aches in my back and my shoulder but I have usually spent a long time at the computer. I get pains in my abdomen, in fact I had one on Tuesday but I had spent a couple of hours in the garden on Monday (first gardening for 3 months). Also, I get lots of wind and this can cause discomfort. It is quite understandable to always suspect the worst but it is just as likely to be something quite mundane.
Ron
Kris
I really feel for you and what you are going through. Keep positive. You haven’t been told the cancer has returned so try to hold on to that. I know this is easier said than done but, personally, I find the worst times are when I have negative thoughts about my condition. I think there are similarities between our situations so I can understand your feelings of frustration and anger. But you have been through enough to know that the doctors will rarely commit themselves to a diagnosis or course of treatment until they are 100% sure. I can’t recall reading that there was a specific reason that you needed to be given drains, but I maybe missed it.I agree that the chemotherapy situation is very confusing. In the space of 4 months I have been advised, variously, “I would not recommend you have any until you have symptoms”, “I want you to start straight away”, “come in next month to start the preparatory work to start the chemo the following month” and this week “I would not recommend you have any until you have symptoms”. So I am not having any just now on the basis that it may make me ill.
I am intrigued by the apparent move towards transplant. There have been a significant number of references to it recently on this site. The surgeons in Edinburgh have always been adamant that it will not be considered for cc. Has your Swedish doctor altered his view or has he always been open to it being a possibility?
Did you get any response from Edinburgh about possible resection or is this still on the go?
My very best wishes.
Ron
Hi Andy
I am very sorry to learn about your mother’s condition, but you have certainly come to the right place to get advice and support. You will soon understand that this is a very bad type of cancer, very difficult to treat and is very rare. So much so that not many doctors or hospital staff have experience of it. Most of the members on this site are based in the USA and so most of the medical facilities referred to are in the US. There are very few of us from the UK so the medical people have even less experience there.
You do not say where your mother is being treated but it is important for you to establish if they have much experience of BDC. The normal advice given to new members is to seek further opinions. My suggestion would be to request your mother’s case be referred to Professor Peter Lodge at St James University Hospital, Leeds. He is acknowledged as being an experienced and aggressive surgeon in this field.
Personally, I think you should be aware that surgery is not often a suitable course and that other forms of treatment, eg chemotherapy, radiotherapy or ablation, may not be any more suitable but can accelerate the deterioration in the patient’s condition. Palliative chemotherapy is designed to make the patient more comfortable and may stabilise or even reduce the tumours.
All the best.
Ron
Gene
Many thanks for the info. I learned more from your posting than from any talks with doctors.
Wishing you the very best of good fortune with your transplant.
All the best
Ron
Kris
I have always been told there is no chance of having a transplant as a treatment for cc, same reason given as to Charlie. Is it the doctors in Sweden who are pushing it?
Ron
Hi Kris
Don’t take it personal. I didn’t get a bottle to blow into in Edinburgh either and I never had pneumonia. I did have the “gasps” but just put that down to fear that I was going to feel some pain at the op site. Never happened of course, but the mind is a powerful thing.
Merry Christmas and a very Happy New Year (to all of us).
Ron
Hi Kris
Just to let you know my thoughts are with you. It is not easy listening to any bad news and receiving negative responses to all of your suggestions for treatment, particulary when this site puts you in possession of so many possibilities. At least you know that if you can come back to Edinburgh you will receive first class care but, of course, it would be so much better if you did not have to come back. Professor Garden and the whole team at Edinburgh are acknowledged as being up there among the best.
All the best
Ron
Hi Kris
I am so sorry the latest news has been upsetting. I can’t give you any words of wisdom because I don’t really understand all the whys and wherefores of the results of your tests. I can understand that unusual numbers coming from blood test will be a cause for concern but do they not have to do several tests to establish that it is not a “blip”? Others, with a much better handle on this, are able to give you more positive interpretations of your current position. What I can say is that I totally understand your frustration and anger with this cancer. Apart from when the Xeloda brought on my angina attack I have been quite unaffected, healthwise, since my first diagnosis. I am pretty fit and haven’t suffered any ailments. Take blood from me and the results come back A1. Stick me in a scanner however and and new tumours line up to have their picture taken! And, of course, everyone I meet tells me how well I am looking. So I get a bit frustrated and angry because I know the likely outcome and there seems to be precious little that I can do to change it. So, like I said to you earlier, you’ve just got to keep plugging away. And you certainly aren’t alone in having a bit of a blubber; we’ve all been there.
Take care
RonJust returned from a wonderful holiday in Florida. The weather was gorgeous and the whole experience was very relaxing. Just what the doctor ordered! Left Florida on Friday with temps in the mid 80’s; arrived in Edinburgh on Saturday afternoon and it was 40. Just got in the front door of the house when a snow blizzard started. It’s all gone now but it sure is cold. One thing about Scotland – if you don’t like the weather in the morning just hang around as it will have changed by the afternoon. Just ask any first time golfer on the links.
Kris, I remember learning that you had your surgery at Edinburgh Royal. They have a great team. I started under Mr Hidalgo but it was Mr Powell who performed the surgery and who has been seeing me since. He is a really nice guy but so young looking. (I keep looking for his school bag when I go into his office). I won’t actually be going to Leeds. Mr Powell sent my notes and CD of my scans to Prof Lodge who has agreed with him that surgery would not be helpful and the best course is to start chemo. I was given a copy of his letter and he said that while he thought he could remove the tumours it would not do any good, presumably because they will just keep coming back. So I will be having chemo at the Beatson, but not at the Western as they are now in a brand new, state of the art, super-duper facilty at Garnavel. The nearest place to there will be One Devonshire Gardens, but I don’t think I could afford to buy a hot chocolate there!
Sorry to hear things have not been so good for you either. Just keep plugging away and “langmayyerlumreek”
All the best
Ron
