Hi Everyone Well ten days after I was meant to start the trial I am still not on it and am asking some BIG questions about it. The night before I was meant to turn up at 9 am my long suffering and stressed out spouse got a 'phone call to say that I was not eligible as I did not have metastatic cancer, so don't keep the appointment. The problem was that I have a piece of paper, the report from a PET scan that shows that I have cancer deposits in distant lymph nodes. So scan in the report, send it off attached to an email and ring them up the next morning. No it was not the lovely voiced Alana, I don't know what has happened to her. Memo to all cancer patients - when you are first diagnosed get a large folder, insist on a copy of every pathology and radiology report and file them, along with anything else that might vaguely be useful sometime in the future. You are likely to have the only comprehensive medical history - it is surprising what goes missing. Back to the main story. Person I am talking with, indicates that she will send it off to the some regulatory person and will try to make another appointment later that day or the next day. My oncologist calls, he is an investigator on the trial and he says that I am eligible and he has made an executive decision that I am on it. 9 o'clock that evening, the very stressed out spouse gets a call from this person, I'm out at a meeting, to state that my latest path results indicate that I am not eligible and the regulatory person has said that lymph node involvement is not metastatic cancer. Back to the big blue folder and haul out a copy of the relevant path results that indicate that I am eligible, scan in and send off attached to an email! Ring the next morning and somehow that path result had got lost from my history!!!. As for the supposedly non-metastatic cancer - I decide to call in a few favours, contact a friend who is an expert in this area and ask their advice. Lymph node involvement is metastatic cancer - Stage 4 under TNM scheme - whatever that is. Besides the published criteria for inclusion on the trial do not mention metastatic cancer. I clearly meet the published criteria. Unfortunately the Principal Investigator is off overseas and isn't back until the end of this week. So I have to wait until they get back to find out what is going on. High stress, particularly for the spouse and the latest path result indicates things have got worse in the intervening time. So I have not taken the Blue Lift to the third floor to ask for Alana again - I hope I do soon as she has such a lovely voice. Cheers Sailor And when men lose confidence and trust in those who lead, order disintegrates into chaos and purposeful ships into uncontrollable derelicts. Wall Street Journal Editorial 1952 ... View more

Hi Everyone My Mum had a bag - after all colon cancer is our family cancer, I just happen to have prostate cancer! Always was the odd one out. Anyway, my M ... View more

Hi Loulou Being a teenager is hard enough and a roughy emotional ride without haveing a Mum with cancer. That's not an excuse for her, but it might help explain some of her behaviour. Canteen have an excellent counselling service that you might like to talk with to get some help. They have specific counsellors for teenagers with a parent with cancer. However, I would be using the Cancer Helpline 13 11 20. They have a good list of resources available and in some states they have peer suport as well. I know that in some areas there is a specific Cancer Connect service for epople in your situation and also specific support groups. Good luck Sailor ... View more

Hi Mrk I had a quick search and dexamethazone seems to be always given with gemcitabane. It is unlikely to be as an anti-nausea agent but more likely to prevent other side effects. So tread carefully.heers Sailor ... View more

Hi Everyone This has been an interesting read so thought I would contribute. I have been a private patient as I have private health care cover, but I have been treated for most of the time in public hospitals. So most of my costs have just been sent to my health insurer, apart from the $50 per day to a max of $250 hospital charge. (It is now $150 for the first time in any one year and nothing after that!). All of my specialists have either bulk billed me or charged me the medicare amount. So for most of the time I have very little out of pocket expenses. Recently I found a spreadsheet I had done at the end of my first treatment all those years ago. Including pharmacy costs, four days in hospital, lots of various scans over the six month period, weeks of radiotherapy and the initial pathology at the end I was $440.35 out of pocket. Currently my oncologist requests that I be bulk billed for all pathology and radiology. My surgeon who sees me every two months to conduct a minor procedure to keep bits of me working ensures that all my bills either go to medicare or health insurance. So apart from the pharmacy co-payment, which these days with the benefit of a health care card is a lot reduced, I am very little out of pocket. So I quite fervently thank the deity that I am treated in Australia and not North America or Europe. In North America I would be impoverished by now and having to sue my health fund to get treatment paid for, and the treatment wouldn't be available in Europe. Cheers Sailor I would not creep along the coast but steer Out in mid-sea, by guidance of the stars. George Elliot, Middle March ... View more

Hi mel015 There are a huge lot of resources out there for people diagnosed with breast cancer and for those who care for them. Firstly the Cancer Helpline 13 11 20 - it is not just for the patients - it is for everyone. Give them a call and ask about resources. also ask if you and/or your Mum can talk to someone who has had a similar diagnosis and are through the treatment - that telephone peer support service is called Cancer Connect. Then the Breast Cancer Action Network has what is called the "My Journey Kit" get in touch with them and get a copy http://www.bcna.org.au. when you go to a hospital ask to see a breast cancer nurse. No other cancer has these people, but breast cancer does and they are there to help you and your Mum. There are also breast cancer support groups. What you are about to find out is that you will be strong enough for this. Hang in there, you will find support and the strength to manage all of this. Cheers Sailor As we sail thru life, don't avoid rough waters, sail on because calm waters won't make a skillful sailor. Anonymous ... View more

G'day Bugger Interesting story on Targin. It is a great drug. You may have seen in the paper recently some fuss about the government rejecting recommendations of the Pharmaceutical Benefits Advisory Committee to put drugs on the PBS. They government has decided that cabinet has greater expertise that the PBAC, all done in the name of cost saving - sorry they didn't reject it they have deferred until economic conditions get better and the budget is in surplus. On of the eight drugs they rejected, all low cost as far as the PBS is concerned, was Targin. The cost saving if they switched to Targin would more than compensate for the cost of supplying this drug, but the bean counters do not think this way. The list of consumer groups that have objected to this is huge. The Consumers Health Forum has coordinated this -so far all to no avail. The peak cancer consumer groups, the peak pain consumer groups were first off the block in objecting to the government's decision. The coalition of voices objecting to the decision has included all the pharmacy groups, all the consumer groups, the AMA, the manufacturers. What the government can't seem to realise is that once they move to cabinet making the decisions new drug approvals become a political process rather than our present system which is the envy of the rest of the world. Stupid, stupid, stupid. Regards Sailor ... View more

G'day Albert Pain management should be there from the very beginning - the surgeon should not wait for the patient to contact them but should be active on ensuring good pain monitoring and management. Go to http://www.painaustralia.org.au/ for more information about what should be done. Regards Sailor ... View more

G'day A;bert Pain management should be there from the very beginning - the surgeon should not wait for the patient to contact them but should be active on ensuring good pain monitoring and management. Go to http://www.painaustralia.org.au/ for more information about what should be done. Regards Sailor ... View more