gissy
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to all thankyou so much for all your kind words, thoughts and prayers. I am grateful that he is longer in pain and suffering. As I said to his 16 yr old daughter. His pain and suffering has now ended and now it’s our turn it’s only fair. To Lainy thank you so much for that beautiful poem I have copied it and am sending it to all my loved ones I did read it through many tears but it truly is a beautiful poem and I thank you so much for sharing it with me. Good luck all with the journey you find yourself on and I hope your journey has less bumps than ours had. Love to all Julie
to all thanks so much for all your help. we found out the problem of all the pain the cancer has now moved onto the bowel and constricted it so he had surgery last sunday. the surgeon said it was a success but it has spread all along the bowel so this will probably happen again. we are still waiting to hear from the new oncology team to see what they have been planned. once again thanks for all your help and support will keep you all informed. Julie
hi to all
we have had the meeting with the onc about the ct scan and as usual mixed bag of information. the scan showed that the tumour hasn’t changed and appears to be no further spread so basically every thing is still the same but the treatment hasn’t shrunk it either. My husband hasn’t had surgery so that’s what we desperately are aiming for so for us this wasn’t quite the news we were hoping for but at least it hasn’t gotten bigger. he’s a bit disappointed with this so if any one has experienced this and has good news to impart I’d greatly appreciate it as he needs to hear some good news. We see the new oncology team on the 21st oct so hopefully they will be more positive than our current doctor. Well thanks for listening hope all is going well for all JulieHi Margaret
I’m sorry to hear about Tom with this new treatment. I can only assume it’s the Cisplatin that is making him feel so ill. My husband is only being treated with Gem only not the Cisplatin and he is tolerating it very well. Maybe you could speak with you Oncologist about doing the same thing. We find out tomorrow if this treatment is working. If we go off he’s tumour markers it’s working well, but the CT scan results will tell us more. Good luck with it all Juliehi andie thanks for your encouragement I’m so glad for your dad we have made the appointment with the new oncologist and if we decide to change it probably means moving as they are 3 and half hours away which really isn’t a problem but it means we have to move away from his children one being 16yrs old she will be the one who will have it the hardest. I’ve already spoken to her before about us maybe moving and told her she can come and stay when ever she likes but due to school and her apprenticeship she can’t move with us but we will put plans in place so that she can visit when ever she likes. Will keep you all posted thanks for all your help advice and well wishes Julie
hi all thank you for all your information and advice. my sister in law works in aged care and she advd that it could have a lot to do with him not moving about as much as he should be. He’s not bed ridden but does lie in bed a bit watching tv or sitting for long periods of time so he doesn’t do a lot of movement so he now just goes for short walks to see if this helps. His thyroid came back normal so as far as his doctors are concerned medically he’s fine. He can’t take oxaliplatin, I assume this is one of the platinum drugs, due to an infection he’s had for 11mths as these drugs can cause the infection to take control, it’s all a balancing act. As I mentioned in another posting his oncologist has appeared to have given up on treatment even though this treatment appears to be working, ct scan due on wednesday, so we have another consult with another one and he may have some ideas as well. I think everything is getting him down especially when he spoke with his oncologist and all these problems with circulation and the sweats was all just too much to take I just thought if we could come up with a solution for him at least things will appear to moving in the right direction and he would be able to look at things more positively again. once again thanks for all your help and advice. Good luck to all Julie
A big thank you to everyone who answered my question. I really do think it’s time for us to change oncologists as this Dr doesn’t explain anything to us or even make suggestions I get all my info from my new lovely family and then confront him with all of this. If my husband’s agreeable I think it’s time to find another oncologist who will actually discuss things with us. Once again thank you for all your help and support. To Andie we are about to have our first CT Scan since starting this 6mths ago and this will take place on the 29th Sept but won’t see the Dr till 12 Oct so I’ll post the results for you. I’m just praying and hoping it will all be positive as surely such a drop in markers must mean it’s doing something to the tumour. Goodluck to all and talk to you all soon Love to all Julie
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
Hi sduggins thank you for your information as we have a meeting with his onc on monday and will talk to him about all the information that I have received. Good luck and I hope your husband continues to improve. Julie
Hi SusanL I cannot thank you enough for this information as Greg is on the same drug regime so that is good news for me. Thank you also for the link I haven’t had a chance to look at it yet as Greg is now back in hospital with his infection levels rising and they don’t know what is causing it. He’s about to start his 2 cycle but with his blood works still normal they can’t figure it out so are doing lots of tests to try and figure it out.But once again thanks so much for the information. Goodluck with your journey. Julie
Hi Mary’s mum I must apologise for the lateness of this reponse Greg is in and out of hospital due to this infection he has started chemo but will let his oncologist know what your mum’s medications are in case that those are an option as well. Thanks for the information and good luck with your journey as well Julie
Hi Janet/NSW australia I was wondering if you could let me know some information as you are in Australia and you seem to know a bit about the chemo regime here. The preferred drug in the US is Gemzar ( think that’s the correct spelling) but we can’t get it here as for Greg’s cancer (bile duct) the Government hasn’t approved it for his but for pancreatic cancer only. What was the regime that you/family member was on how did it work for you/them etc. The oncologist at North Shore Private advd us that they can get their hands on it if they need to but the oncologist at Canberra Private advd that we can only approach the Drug Company on compassionate grounds or approach his health company. any advise you can give me on this I’d appreciate. thanks again Julie
