treatment in Australia

Firstly may I say how sorry I am about your husband. We thought we would be one of the lucky ones as Greg’s was caught so early. It was the jaundice that was our first sign. CT scans PET found no spread so all thought that resection and chemo may have kept it all at bay. Unfortunately when they opened him up they found 3 x 1mm spots. These were removed but the surgeon thought the best plan was to close and start chemo asap. Unfortunately we had major set backs which included infection, problems with his right lung and bile ducts blocked which all took months to get under control and is still to date causing problems. He’s just had a stomach by pass as he just started not digesting foods so surgery was necessary. They still aren’t 100% sure what caused it as they biopsied the sight with no definitive answer but they are sure it’s due to the cancer. We currently live in Jerrabomberra but I have a house on the Central Coast so if necessary we can move there or if need be rent or buy in Sydney if that’s what needs to be done as the Central Coast hasn’t got the best track record where it comes to Chemo as they are so busy there. Sydney is the best area for us. Everyone here assures us that his oncologist Dr Desmond Yip is very good but I’ve always said to Greg that we need to do a good fight and try everything that is available and if that means us speaking with the original team so be it. The only reason why I won’t go to another Dr here is that is such a small area that I’m not sure how comfortable they would be and by going to Sydney we will get a more honest opinion, so I think anyway. We fall under the Greater Northern so that is why we were referred to North Shore as this all started in Gosford. The oncology nurse also said that the chemo treatment is only palliative but you just hold out and hope that you will be the one to beat the odds. I know that this isn’t going to happen but I just can’t roll over and say that’s it. Life is full of regrets and I definitely don’t won’t to look back on this and say what could I have done Once again I can’t thank you enough for all your help and support. Good luck too. Julie

Hi Janet ours is a long and drawn story but the condensed version is we were being treated originally for surgery at North Shore Private in Sydney but as my husband lived in Canberra that’s were we ended up so treatment is now at National Capital Private Hospital. Because we always had to go back to Canberra the contact we had with the oncology team at North Shore was very limited but they give us some idea what was going to happen and that if one treatment didn’t work then they always had other options we could try. Like yourself as soon as he was diagnosed I too got onto the web to find out what I could and found information on Oncology conferences recommending gem/cis. Now at our initial meeting with our Doctor he told us he couldn’t be saved only extend his life a bit. When the Doctor advd his treatment I queried why not using gem/cis and he advd us that it was only available to people with pancreatic cancer and that the treatment he was recommending was the only protocol available to us. He then when on to say that if this treatment didn’t work then he could approach our health insurance to pay for it. So that’s we’re were at. The reason why I want to go back to North Shore is that our last meeting with the Doctor he told us that if this failed there was nothing else to offer, yet the impression that I got from North Shore that there was more than one alternative. My husband has quiet a few complications one being an infection so he is constantly in and out of hospital and we had a meeting with his Infectious Disease team and we told them about getting a second opinion and the doctor there said that our onc was a very good doctor if that’s what our concern was. The only thing I can think of is that the government has changed it’s mind about what treatment they will approve for this cancer. We’re getting in touch with the surgeon tomorrow and see what we can do because I do think that we need to get a second set of eyes on this and if need be we’ll move back to Sydney. thanks for all your input and hope all goes well for you and your husband. Julie

Janet we have just got back from having the first round of gemcitabine. I spoke with the head nurse who advd me that Gem with cis is not protocol in australia and she has never given it together. She advd that xeloda and oxilaplatin, have been given together but she is not sure if it is approved for Cholangio. I have been told that gemcitabine is not approved by the australian government so we have to pay for this drug. Luckily our health insurance is paying half but we have to pay the rest ourselves, so if what you say is true about gem/cis being the first line then our onc has no idea. I do understand that if you have pancreatic or gall bladder cancer then gem can be used but not for cholangio. Tomorrow morning we’ll be call our surgeon at North Shore Private to have a chat and see if he can arrange a consult with our original oncology team. I’m not sure if you can give me this information or not but who do you know that has had this exact treatment cause if I can arrange a meeting with this doctor I certainly will. Any information that you can give will be greatly appreciated Julie

Kris thanks for the information. When treatment was first talked about I enquired with the oncologist why it wasn’t gem/cis and he advised me that due to it not being approved here in australia for this type of cancer, due to cost, we had to use the other regime. It is only because this treatment failed and that our health insurance is paying for it that we can get access to gem/cis. The reason why I’m trying to see what other people are on is that the onc we are seeing now has said from day one that he can’t help us and has also said that if this new treatment doesn’t work then nothing else will, while the other onc team, which is 4 hours drive from where we live, was far more hopefully saying that if one treatment doesn’t work then he has more treatments that he can get his hands on. Now I know we have a massive battle on our hands and we both don’t delude ourselves of what is ahead but I’m sorry at 45yrs of age we just aren’t prepared to accept that 2 rounds of the original treatment and what ever he deems is enough this time round is all there is. We are going to approach the original team and see if they can offer any more treatments and it helps if I am armed with information that I can ask and get answers for. Once again thanks for the insight as I now am better informed about how other treatments work. I’m not happy with our current onc as he never explains why other treatments aren’t useful but you in just a few sentences you have explained why this may not be possible. I would have thought that if I’m asking a whole heap of questions that he could have taken 5mins of his day to go through and explain this all. Once again thank you for all your information Julie