Firstly, a note from Google about how blogs currently operate which might affect some of you. -
"We encourage you to tell affected readers (perhaps via a blog post), that if they use a non-Google Account to follow your blog, they need to sign up for a Google Account, and re-follow your blog. With a Google Account, they’ll get blogs added to their Reading List, making it easier for them to see the latest posts and activity of the blogs they follow."
If you don't wish to post comments you can access it from: philipbulletin.blogspot.com.au
-----------------------
Today, 1 March, we saw oncologist Dr Sayed Ali again and reported that Philip has been, not on a roller coaster but on the Big Dipper, in terms of his symptoms and labile mood. We thought a corner had been turned (apologies for the mixed metaphor) in recent days as he ate more, walked more strongly, was less agitated and fatigued, and talked clearly and at a normal rate. But today after breakfast things fell into a heap quite suddenly and once again he was wiped out, had difficulty walking and asked for a wheelchair for the hospital visit.
The doctor thought he had been started on the Tarceva (anti-cancer drug) too soon after radiation finished and that the dose, an average given to people of all shapes and sizes, was perhaps too strong. So he is to give the Tarceva a rest for 2 weeks before restarting it at a lower dose, He is to continue on the steroid anti-inflammatory Dexamethasone - which was given for the radiotherapy and which had been tapered off to by now a negligible dose of 1 mg - for another 2 weeks, and he is to take an antibiotic for a rash on chest and face (side effect of Tarceva) as it could become infected.
The doctor commented that it is not an easy task juggling the medications. We are hoping for the 'Goldilocks' combination.
Monday, 29 February 2016
Monday, 22 February 2016
# 14 - Medication dispensing error
Philip's new anticancer drug was picked up on Thursday. The pharmacist had not been familiar with the drug and I had to print the name for her before she could order it from Sydney. The packet instructions said "One tablet twice daily" so Philip took the first dose Thursday evening, then the two per day on Friday and Saturday as instructed. On Sunday morning I began to worry because I remembered the oncologist saying, one tablet per day. Also the Patient Information sheet said that the normal dose was one tablet per day. Sure enough, the original written prescription (in poor doctor's writing) said "One tablet daily" but the pharmacist had misread "tablet" as "twice". Medication is frequently packeted in a month's supply and one would have thought that a packet of 30 would have rung some sort of bell.
The Poisons Information Service reassured us that the two-day overdose was unlikely to have any serious adverse effect and the oncologist confirmed this on Monday morning. But it was a significant dispensing error and the pharmacist wrote my complaint on the back of his hand, which I told him did inspire confidence that procedures would be reviewed. He said he intended to go straight to the computer but agreed to photocopy the original script and the pharmacy printout.
I intend reporting the matter to AHPRA.
The Poisons Information Service reassured us that the two-day overdose was unlikely to have any serious adverse effect and the oncologist confirmed this on Monday morning. But it was a significant dispensing error and the pharmacist wrote my complaint on the back of his hand, which I told him did inspire confidence that procedures would be reviewed. He said he intended to go straight to the computer but agreed to photocopy the original script and the pharmacy printout.
I intend reporting the matter to AHPRA.
Monday, 15 February 2016
Post #13 - glad tidings
What a difference two weeks makes. On 31 January the consultant physician at Calvary hospital, after seeing the PET scan results with Philip's body lit up like a Christmas tree with all the metastases, was talking of a prognosis of 'maybe a few months. He commented to me that it had been a roller coaster for us and I replied somewhat acerbically that 'roller coaster' was not the right metaphor because it had been all downhill since Philip was admitted on 15 January.
Well happily it seems there is an up curve because of the favourable molecular study results. At today's appointment oncologist Dr Ali said Philip's prognosis was 'hopefully at least 2 years and maybe more', and that 60-70% of his patients show a good response to treatment. There is a targeted medication which works specifically on the 'non-small' lung cancer cells with the EGFR biomarker, preventing or slowing down their growth, and it works also to shrink all the metastases in spine, liver, bones and lymph nodes. They are to be treated by just one tablet of Tarceva a day and side effects are normally minimal. It is not even classified as chemotherapy.
Progress will be monitored by CT scans every 2-3 months. If the Tarceva stops working there is another medication which has already been approved in the US and should be approved in Australia before very long. Dr Ali expects that the heavy-duty pain reliever can be gradually reduced, eliminating the skin patch and just taking tablets if needed.
More radiotherapy should not be necessary unless there is an area which does not respond to Tarceva, as shown by the CT scans.
Philip's anaemia will be monitored initially by fortnightly blood tests and should improve with iron-rich foods - a good excuse for having oysters! At present he is just skin and bone so he is to continue trying to regain the lost 13 kgs. (Lung cancer patients do better if they are carrying some weight). He might be persuaded to attend one of the exercise physiology classes at University of Canberra, although not necessarily the Lungs in Action group I go to. They would devise an individual program which will not jar the spine but would strengthen surrounding muscles.
Other than that, the doctor's advice is to 'just be normal', get out of the wheelchair and live life!
With radiotherapy finished and a positive prognosis Philip's mental state should improve alongside his physical one.
I shall write the next post probably after the next blood test and oncologist consultation in a fortnight.
Well happily it seems there is an up curve because of the favourable molecular study results. At today's appointment oncologist Dr Ali said Philip's prognosis was 'hopefully at least 2 years and maybe more', and that 60-70% of his patients show a good response to treatment. There is a targeted medication which works specifically on the 'non-small' lung cancer cells with the EGFR biomarker, preventing or slowing down their growth, and it works also to shrink all the metastases in spine, liver, bones and lymph nodes. They are to be treated by just one tablet of Tarceva a day and side effects are normally minimal. It is not even classified as chemotherapy.
Progress will be monitored by CT scans every 2-3 months. If the Tarceva stops working there is another medication which has already been approved in the US and should be approved in Australia before very long. Dr Ali expects that the heavy-duty pain reliever can be gradually reduced, eliminating the skin patch and just taking tablets if needed.
More radiotherapy should not be necessary unless there is an area which does not respond to Tarceva, as shown by the CT scans.
Philip's anaemia will be monitored initially by fortnightly blood tests and should improve with iron-rich foods - a good excuse for having oysters! At present he is just skin and bone so he is to continue trying to regain the lost 13 kgs. (Lung cancer patients do better if they are carrying some weight). He might be persuaded to attend one of the exercise physiology classes at University of Canberra, although not necessarily the Lungs in Action group I go to. They would devise an individual program which will not jar the spine but would strengthen surrounding muscles.
Other than that, the doctor's advice is to 'just be normal', get out of the wheelchair and live life!
With radiotherapy finished and a positive prognosis Philip's mental state should improve alongside his physical one.
I shall write the next post probably after the next blood test and oncologist consultation in a fortnight.
Sunday, 14 February 2016
Post # 12 - weight loss continues
Today we were scheduled to be in Christchurch to start our NZ holiday. Perhaps it's just as well we cancelled as yesterday there was another 'quake somewhere outside of the city, with aftershocks felt in Christchurch itself. We might have been nervous picking up a car to drive into the countryside.
Philip's weight loss continues but really he doesn't do a lot to help himself. He is trying to go out each day, which is good, but he hasn't been taking the high-energy drink he has been prescribed and has been calling on friends for coffee but then misses lunch. Or gets back so late for lunch that he then can't eat dinner. Also he is so busy on the phone that he forgets about morning tea and snack. He doesn't seem particularly concerned though I am. Will see what the oncologist has to say tomorrow.
Philip's weight loss continues but really he doesn't do a lot to help himself. He is trying to go out each day, which is good, but he hasn't been taking the high-energy drink he has been prescribed and has been calling on friends for coffee but then misses lunch. Or gets back so late for lunch that he then can't eat dinner. Also he is so busy on the phone that he forgets about morning tea and snack. He doesn't seem particularly concerned though I am. Will see what the oncologist has to say tomorrow.
Saturday, 13 February 2016
Post # 11 - a looong sleep
That pain medication is powerful stuff, no wonder it has a street value. In Philip's case it sent him on a high and the gotta-have-it-right-this-minute purchase of a new phablet, followed by constant use of same, seemed to wind him up further.
The crash came at 2 pm yesterday and he went into a heavy sleep, with barely-fluttering eyelids each time I checked on him, until he woke at 9 am today, 19 hours later. He obviously needed the rest but it doesn't help his weight when he misses meals and he has lost a further 4 kg. We can only hope it was a glitsch with the scales. He has completely lost any desire for sweet foods (he even thought the pikelets I cooked were sweet despite no sugar in them) and after years of low fat cooking it is not easy to adjust to full cream everything. I am preparing his 'n' her meals but trying to simplify recipes.
The crash came at 2 pm yesterday and he went into a heavy sleep, with barely-fluttering eyelids each time I checked on him, until he woke at 9 am today, 19 hours later. He obviously needed the rest but it doesn't help his weight when he misses meals and he has lost a further 4 kg. We can only hope it was a glitsch with the scales. He has completely lost any desire for sweet foods (he even thought the pikelets I cooked were sweet despite no sugar in them) and after years of low fat cooking it is not easy to adjust to full cream everything. I am preparing his 'n' her meals but trying to simplify recipes.
Friday, 12 February 2016
Post # 10 - last trip to Canberra Hospital (for time being at least)
Radiation finished yesterday. It knocked Philip around a bit, he says he "felt buggered:, i.e. extremely fatigued. He also hallucinated a couple of times which was a strange experience for both him and me although I recall my mother hallucinating scenes from the French Revolution on the wall opposite her hospital bed.
Today we had a consultation with one of the dietitians at Canberra Hospital, Michael Salmon, a pleasant and professional young man who basically confirmed what I was doing anyway by way of food provision. He recommended a drink supplement which apparently is quite palatable. A major problem is Philip's lack of appetite, compounded by all the appointments which preclude a regular regime of meals plus morning and afternoon teas. Earlier missed meals in Calvary in preparation for procedures contributed to weight loss.
There is a break of 3 days with no appointments before oncology clinic on Tuesday at Calvary hospital only a few kms away.
We hoped Philip might be able to go to a movie tomorrow but he doesn't feel up to it yet. He is walking a little more strongly though still a bit wobbly on his pins.
Thanks again to you all for your support.
Maureen
Today we had a consultation with one of the dietitians at Canberra Hospital, Michael Salmon, a pleasant and professional young man who basically confirmed what I was doing anyway by way of food provision. He recommended a drink supplement which apparently is quite palatable. A major problem is Philip's lack of appetite, compounded by all the appointments which preclude a regular regime of meals plus morning and afternoon teas. Earlier missed meals in Calvary in preparation for procedures contributed to weight loss.
There is a break of 3 days with no appointments before oncology clinic on Tuesday at Calvary hospital only a few kms away.
We hoped Philip might be able to go to a movie tomorrow but he doesn't feel up to it yet. He is walking a little more strongly though still a bit wobbly on his pins.
Thanks again to you all for your support.
Maureen
Sunday, 7 February 2016
Post # 8 - exciting news
We got some really exciting news today, which feels like winning the lottery: Philip is one of the lucky 10% who have the EGFR or ALK mutation (not sure which). This means that chemo therapy can be better targeted and patients have a better prognosis. It is more common in people who, like Philip, have never smoked.
The GP has also replaced one of the pain-relieving medications with a skin patch, which should make the med schedule simpler.
The GP has also replaced one of the pain-relieving medications with a skin patch, which should make the med schedule simpler.
Subscribe to:
Posts (Atom)