judyb
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Hi Kris,
I feel so the same about breast cancer. I get jealous because I think at least you’ll probably survive! And then there’s all this research for lung cancer, breast cancer, leukaemia- but hey, how about cc-especially seeing it is so often inoperable. I just makes me mad! But people keep telling me the longer I survive the more likely a cure- but not if there is no research! And then there are those who don’t get sick till they are in their 80s. That’s another 30 years to me! and I’ve got 20 years on you -but I know just how you feel. Just had to get the anger out!!SWAG is so true!! They Drs really can’t give you figures these days. I think my Dr has had quite a bit of experience with CC but I seem to have defied the odds which has bamboozled him. I will NEVER give up and I think he knows it now. I am feeling much better today so my cell counts must be on their way back up. Thanks for all the support. Perhaps if the chemo can reduce the tumours surgery or radiation may be an option. He was going to try radiation untill the peritoneal mets were discovered.
I don’t come on here very often but read your news. I am very happy for you. I know how much that news can mean to you. You hear people complaining about stupid things and you think “if only you knew”. Keep up the good work.
It seems unfair and at some stage you’re probably angry but don’t give up- either of you. Going through the tough times often makes you a better person. Know there are plenty of us out there that know how you feel. Think how grateful you and your family will be when it’s all over. I have 2 kids in their early 20s and I sure as hell don’t want to leave them behind and I’m determined not to. We’re all learning from the experience- unwanted as it is.
Hi Gale,
Don’t worry about moaning. This is the place for it. I’m sure friends and family get sick of it and it helps to get it off your chest. I’ve had 2 resections (2nd one failed- too close to blood vessels-damn it)and have a great L- shaped scar and my abdomen has never been the same since. Mind you I am 53 and going thru menopause so my shape would be changing anyway but I think surgery has made a major contribution. Having your IVC involved is major stuff and it’s great you’ve come thru it like you have. Energy levels are a problem. If you did what excercise you could I’m sure it would help. But that’s easier said then done I know. I used to be super fit before I was diagnosed and excercised heaps and even used to teach aerobics but I just can’t be bothered any more. My perspective to some things in life has definitely changed and these days if I don’t feel like doing something I don’t.Hi Cherbourg,
I am also in the medical field (Microbiologist) & have access to stuff the public doesn’t. I am being treated at the hospital I work at and when I was 1st diagnosed with gall bladder cancer 3 years ago I read the CT report before having surgery and suspected all was not well but didn’t want to believe it. Every time I have blood tests I know the results before the doctors do. Even though I don’t have full privacy I chose to be treated where I am because they are one of the hospitals in the forefront of cancer research and a new wing is being built for the treatment and care of cancer patients- to be named the Olivia Newton John Cancer Centre. Sorry for rambling. Sometimes its nice talk about stuff and not burden friends and relatives. But since that 1st CT scan I never read those reports but wait for the doctors to tell me. Don’t like nasty surprises.Hi Marion,
I’ve had 5FU administered 3 different ways but all intravenously.
First time was bolus 1st week then 3 weeks off. Second time was 48 hour infusions 3 weeks in a row then 1 week off. This time is 5 weeks continuous infusion while having radiotherapy. The last 2 times are thru portacath of course. The side effects have lessened each time. Had diarrhoeae 1st time, very dry skin 2nd time. This time not much to note. I’ve also had gemcitabine. Didn’tlike that one at all- chills & rigors like the flu.
I could certainly put up some brochures in the radiation & oncology departments. They have heaps of cancer help advertising up.
Lisa,
You sound like you are in a similar situation to me. We could survive without me working but it helps fund the overseas trips. We also went to Rome when in Europe and enjoyed it very much. The holiday in France also sounds good. How are your side effects? I’ve taken very little time off work- mainly when having surgical procedures done but have worked through all else. Working takes your mind off feeling sick- unless it is very bad of course.Just adding to the Ca19-9 info. This marker is non specific and can be elevated when there are blockages and abnormal LFTs and is only a guide. When I had very bad blockage it was in the high hundreds and when I was originally diagnosed with gall bladder cancer it was negative. Don’t rely on the marker too much to indicate progress.
My Ca19-9 is sitting around 180 at the moment but fluctuates depending on how blocked I am.
JudyHi back to you all. It was nice to log on and find welcoming replys.
Miraculously I am tolerating the radiotherapy very well. (not sure of the type-but daily for 5 weeks – half way through now) No skin problems, just a little nausea because the stomach is also getting bombarded. Chemotherapy is 5FU and I have had worse side effects from that in the past when it was administered differently. Of course I am getting very tired but I find the best way to cope with that is to live life normally and accept help from friends and family without guilt.
Having found this site I am surprised at the number of people with this disease considering it is supposed to be fairly uncommon. I work in a hospital lab in Melbourne Australia and there are 3 patients at present with cc who are very sick (as in septic or infected) so there must be more out there that are coping like the rest of us and getting by. Touch wood, there have been no infection issues yet as I know the risk is high because of the blockage problems.
I have to agree with you about the Doctors Kristin. What is it with them? One in particular sounded like I was going to be pushing up the daisies a year after diagnosis and I think he is a bit taken aback that I am doing so well. When I see him he makes me feel like I must prepare myself for the inevitable any time now. Fortunately he is only one and there are plenty of other doctors who are very posivie. Keep on enjoying yourself to the max .
I think a positive attitude is very important and I am encouraged by reading about others on this web site that are doing well and my prayers go out to those who are struggling.
My long term plan is Europe again in 2010. I will get there.
