Last blog entry took me up to where I finished my last clinical trial in December 2012. So, since then....... Over the Christmas period I had, for the first time, a lot of issues with pain management. Prior to that all my symptoms for the past 4 years related to treatment, rather than the cancer itself. So we spent most of January getting the pain under control, finally settling on 20mg OxyContin morning and night. I have no idea whether this is a small or a large dose - but it worked. Late January I commenced a new chemo routine - carbo and alimta. To date I have had 5 rounds, with occassional delays because of poor blood counts. The 5th round was meant to be Alimta only, but a multitude of errors last Friday meant I got carbo as well. I am tolerating this chemo extremely well. No major side effects, with fatigue being the only real issue but I am on top of that now. No weight gain or loss, good energy, no nausea etc, just some annoying constipation, probably from the OxyContin. And I have reduced the day time dose of OxyContin to 10mg, and intend to reduce the night dose any day now. I have had 2 scans during the period - the first showed stable, the second showed minor reduction. Dr West, from the Grace website, indicated that it was very unusual to get any shrinkage at all with a 5th line treatment. And during the time I have also done 4 holidays - 9 days camping over Christmas, 5 days in wonderful Byron Bay, 6 days camping at the National Folk Festival in Canberra, and 5 days to central Australia, including one night on the Ghan. Truly wonderful times. Gail ... View more

Our Burma trip in September last year was fantastic. We did a 10 day river cruise through a company called Pandaw, who we also travelled to Cambodia and Vietnam with. Climbed pagodas, went to villages, witnessed the monks procession for alms etc etc. but I was getting weaker and weaker, and not eating. Figured it was the heat. On return had a scheduled visit to Peter Mac for a scan and went there straight from airport. We were then staying in Melbourne overnight for oncologist appointment the next day. However by 4 we had had a call from him (my first ever) saying that my magnesium was very low and I need to take more tablets immediately. Magnesium and potassium problems had been continuous for 3 years so no surprises there. An hour or so later, whilst at one of the fine dining restaurants in Melbourne (not that I was eating but I could watch others) when the second call came through. Radiologist had contacted oncologist to say blood clots were showing up in scan and I needed to come back to Peter Mac immediately for injection. Not a problem, done. The next day we attend normal review meeting and scans review stable. And we all know we are happy with stable! So finally got to go home. First load of washing is on when the next call comes. Potassium is so low I need to get to hospital, yes, immediately, not tomorrow, for a transfusion and probable overnight stay. Excellent! So off I trot obediently to Bendigo Hospital and yes, time for an overnight stay and about 8 IV's of potassium. They finally allow me so escape by lunch time the next day. But hadn't even got off the ward when the next call comes saying that they are mostly worried about something else again (can't even remember what now - chemo brain). So off trial drugs for at least 2 more weeks. And, like most of us, I don't like being off treatment as I feel very vulnerable. At next review coloristic colorist suggests we give up on the trial as I am a train wreck waiting to happen. But no, I convince him of another 6 weeks. But next scan continues to show progression so the decision is taken out of my hand. Came off trial just before Christmas, having started in Mrch. What next........ Gail ... View more

So there was no sign of side effects and away I went to Canberra at Easter. The weather was wonderful and I delighted in the sun. Plus the 18 music venues with music 18 hours a day. There were lots of logistical complications about the trip including needing to do a return flight to Melbourne to have scheduled scan. But after that we had 3 days of relaxation, travelling down the east coast back to Melbourne. And the side effects decided to get their revenge! I had a red and swollen face (probably from that lovely sunshine) that burnt. A lot. The only relief was to have a wet face washer on my face at all time. And the rash, all over body, just exploded, far worse that I had ever had with tarceva. I had dermalogy recommend every potion known to man. And I was full feet to head rash. Miserable. But scan results were stable so we persevered for another 6 weeks. At this stage I was only on dacotinimib But by mid year progression was happening again and we added in the crizotinib. And another side effect. This time my scalp turned into a teeming mess of infection. Hair fell out again, 3rd time, and I added a touch of Staph to the mix. This was truly horribly. All over crusted weeping infection. Disgusting! But slowly we got it all back under control again, and I was well enough to go to Burma for 12 days in September. Dr was a tad worried in case something went wrong, but really, what could go wrong? Hmmmmmmm Gail ... View more

One of the things I have forgotten to mention is my determination to take holidays. Sometimes this would be difficult to fit in around treatments and clinical trial responsibilities. I recall one holiday required at least 4 international conferences (not just about me of course) to be able to go for 4 weeks, rather than the 3 weeks required between infusions. Since diagnosis I have been to Darwin, Broome (where my hair fell put for the first time) Canada and Alaska (where couldn't wear shores because of toe infections), Thailand, Russia (including a side trip to Paris and Ireland - Irish husband!). Vietnam, Cambodia and Vietnam. And Burma, but more about that one later! This has meant travelling with no health insurance. Risky, but to some extent I have a bit of a black attitude to this. If I have to cancel for health reasons, then the money is probably the least of my problems. And if I get really sick whilst away , well, who knows..... We will just have to deal with it. So, I went back to 150 mg of tarceva. We had to do a few modifications to the dose, but got there in the end. But unfortunately the progression continued. At this stage I was jogging again, 35ks a week and feeling very self righteous. By end 2011 my oncologist was trying to get me ona new clinical trial, but the trial doctor was very reluctant given my extreme reaction to tarceva, and the fact that I would need a need biopsy to meet entry requirements, and I am not easy to biopsy. But in the end we prevailed and I got accepted into the Dacomitinib (extreme version of tarceva) and crizotinib trial in March 2013. New trial doctor was predicting dire things, but I got through the first round with no side effects and headed off to the National Folk Festival in Canberra for 6 days of camping. Gail ... View more