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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.
Saturday 6 February 2016
Blog post # 7 - at home
(Grr, this is my second attempt at this post, the computer swallowed up the first.)
Philip has now had the first two of five radiation treatments, with no obvious "sunburn", some internal burning feeling and a lot of fatigue. We now have a disability sticker for the car, which should make attending appointments less tiring.
It has been challenging managing the 8 packets and bottles of medication Philip was sent home with, especially for someone who never took medicine before. Fortunately he does not have to take all at the same time. Pain relief has been the most difficult as there was a glitch in communication between the hospital doctor and either the pharmacist or the nurses' station. He is gradually getting on top of it all and fares much better when pain is controlled. Jocelyn has drawn up an Excel medication chart. One can only wonder how patients with literacy problems or learning deficits cope.
Another challenge is to fatten Philip up as the radiation works better if he has some flesh between skin and bone. His appetite is much improved since returning home and eating home cooked food.
It was great to have Jocelyn's physical and emotional support over several days this week. She drove down from Sydney earlier in the week and came back on Friday with Griffin and Vida, then Jason bussed down after work. He stayed with his mother Robyn and thoughtfully took the children there to sleep. While it was a delight to see them, Philip found their high spirits tiring. I would love to have some of their high octane fuel!
Many many thanks to you all for your good wishes and offers of help, visits, assistance with transport, flowers, meals and goodies. They are very much appreciated.
So, three more radiation treatments, possibly a session with the dietician, then the oncology clinic at Calvary hospital. We have fingers and toes crossed that all will go well.
Philip has now had the first two of five radiation treatments, with no obvious "sunburn", some internal burning feeling and a lot of fatigue. We now have a disability sticker for the car, which should make attending appointments less tiring.
It has been challenging managing the 8 packets and bottles of medication Philip was sent home with, especially for someone who never took medicine before. Fortunately he does not have to take all at the same time. Pain relief has been the most difficult as there was a glitch in communication between the hospital doctor and either the pharmacist or the nurses' station. He is gradually getting on top of it all and fares much better when pain is controlled. Jocelyn has drawn up an Excel medication chart. One can only wonder how patients with literacy problems or learning deficits cope.
Another challenge is to fatten Philip up as the radiation works better if he has some flesh between skin and bone. His appetite is much improved since returning home and eating home cooked food.
It was great to have Jocelyn's physical and emotional support over several days this week. She drove down from Sydney earlier in the week and came back on Friday with Griffin and Vida, then Jason bussed down after work. He stayed with his mother Robyn and thoughtfully took the children there to sleep. While it was a delight to see them, Philip found their high spirits tiring. I would love to have some of their high octane fuel!
Many many thanks to you all for your good wishes and offers of help, visits, assistance with transport, flowers, meals and goodies. They are very much appreciated.
So, three more radiation treatments, possibly a session with the dietician, then the oncology clinic at Calvary hospital. We have fingers and toes crossed that all will go well.
Tuesday 2 February 2016
Post # 6 - Out of hospital
Progress was made today in that Philip was discharged from Calvary hospital. He will of course be back as an outpatient when chemo begins. The escape from hospital food has had a beneficial effect on his appetite and he managed a 10 cm quiche for lunch along with a glass of wine. It's important to keep up the calories! A weigh-in showed that the 10 kg loss is now only 9 kg and he remains within the normal BMI range.
Much of the day was spent at Canberra Hospital at Radiation Oncology, a.k.a. Rad Onc. This is in a brand new, state-of-the-art, building. 'Rad' is right: Philip was tattooed front and back (the targets) and given a barcode. We had a consultation with the Rad Onc registrar Dr Tim Squire who took pains to explain fully the proposed treatment, its aims and likely side effects. He even gave us an emailed copy of the PET scan picture which shows the multiple sites of cancer activity. Then the on-call specialist Dr Angela Rezo came in to check and confirm Tim's proposed treatment.
The MRI scan taken yesterday showed multiple metastatic lesions and compression wedging of the #8 thoracic vertebra of the spine by a tumour. Radiation treatment will concentrate on this area to prevent damage to the spinal cord. The right lung, site of the primary cancer, will also be treated. A further CT scan - Philip's 4th - was taken to assist in detailed planning of the radiation which will start tomorrow.
He will have radiation therapy for 5 days in all, Thursday, Friday, the weekend off, then Monday,Tuesday and Wednesday. By then the results of the EGFR/ALK analyses should be available and will help in planning the chemo treatment back at Calvary hospital.
We are coming to grips with a complex medication regime: pain reduction, appetite stimulant, anti-nausea, anti-constipation and anti-swelling tablets. Quite a challenge for someone who rarely took even Panadol.
We have found our smartphones invaluable - for tic-tacking between home and hospital or when I have had to move the car in the carpark, also for taking photos of reports for our records.
We have nothing but praise for the medical attention Philip has been given to date. The doctors are extremely busy, often overworked, but have shown compassion, patience and excellent communication. The nurses seem to be under extreme stress.
Much of the day was spent at Canberra Hospital at Radiation Oncology, a.k.a. Rad Onc. This is in a brand new, state-of-the-art, building. 'Rad' is right: Philip was tattooed front and back (the targets) and given a barcode. We had a consultation with the Rad Onc registrar Dr Tim Squire who took pains to explain fully the proposed treatment, its aims and likely side effects. He even gave us an emailed copy of the PET scan picture which shows the multiple sites of cancer activity. Then the on-call specialist Dr Angela Rezo came in to check and confirm Tim's proposed treatment.
The MRI scan taken yesterday showed multiple metastatic lesions and compression wedging of the #8 thoracic vertebra of the spine by a tumour. Radiation treatment will concentrate on this area to prevent damage to the spinal cord. The right lung, site of the primary cancer, will also be treated. A further CT scan - Philip's 4th - was taken to assist in detailed planning of the radiation which will start tomorrow.
He will have radiation therapy for 5 days in all, Thursday, Friday, the weekend off, then Monday,Tuesday and Wednesday. By then the results of the EGFR/ALK analyses should be available and will help in planning the chemo treatment back at Calvary hospital.
We are coming to grips with a complex medication regime: pain reduction, appetite stimulant, anti-nausea, anti-constipation and anti-swelling tablets. Quite a challenge for someone who rarely took even Panadol.
We have found our smartphones invaluable - for tic-tacking between home and hospital or when I have had to move the car in the carpark, also for taking photos of reports for our records.
We have nothing but praise for the medical attention Philip has been given to date. The doctors are extremely busy, often overworked, but have shown compassion, patience and excellent communication. The nurses seem to be under extreme stress.
Blog post #5 - Results of PET scan and meeting with oncologist
First of all, apologies to those who may have missed some of the previous posts. To see all the posts about Philip's health, type (or paste):
philipbulletin.blogspot.com
into your browser to see the list of all of the blog posts to date.
Today the oncologist, Dr Sayed Ali, met with Philip, Maureen and Jocelyn and delivered the PET scan results. The scan unfortunately showed lots of active cancer sites in Philip's body, including in his lungs, liver, bones and lymph nodes. The oncologist classified Philip's cancer as being at Stage 4, which means that treatment is directed to slowing the progress of the cancer, not curing it.
The immediate concern is with cancer in one of the vertebrae in Philip's spine, specifically thoracic vertebra number 8, which is in the mid-back (level with the base of the sternum). The doctors are concerned that it may collapse and place pressure on the spinal cord, which would cause pain and potentially weakness of limbs, so Philip had an MRI tonight to examine the extent of degradation. The MRI images will help the doctors decide whether Philip needs to receive immediate targeted radiation treatment to slow the deterioration of the vertebra, prior to starting chemotherapy.
Philip is awaiting the results of a molecular study of his cancer to determine whether he is one of the 10% of people with adenocarcinoma of the lung who have the EGFR or ALK sub-types. These sub-types respond much better to a specific oral chemotherapy. The molecular study results are expected in about a week, but Philip probably won't have the implications explained to him until his next appointment with the oncologist in a fortnight's time (on 16 February).
Philip is being very philosophical in the face of this unwelcome news from the PET scan, taking the view that he has to play the hand he's been dealt.
On the positive side, the pain management medication is working well provided Philip gets top-up doses soon after he requests them. He still has limited appetite, but has gained one kilo, so he's now the right side of 60kg again.
Philip and Maureen liken Philip's discharge date to a chimaera: just as it seems within grasp it moves further away. It is still possible that he will discharged tomorrow (Wednesday 3 February) but he will stay in hospital longer if urgent radiation treatment is necessary for his spine.
Stay tuned for updates on the main philipbulletin page.
Calls and visits are still welcome!
philipbulletin.blogspot.com
into your browser to see the list of all of the blog posts to date.
Today the oncologist, Dr Sayed Ali, met with Philip, Maureen and Jocelyn and delivered the PET scan results. The scan unfortunately showed lots of active cancer sites in Philip's body, including in his lungs, liver, bones and lymph nodes. The oncologist classified Philip's cancer as being at Stage 4, which means that treatment is directed to slowing the progress of the cancer, not curing it.
The immediate concern is with cancer in one of the vertebrae in Philip's spine, specifically thoracic vertebra number 8, which is in the mid-back (level with the base of the sternum). The doctors are concerned that it may collapse and place pressure on the spinal cord, which would cause pain and potentially weakness of limbs, so Philip had an MRI tonight to examine the extent of degradation. The MRI images will help the doctors decide whether Philip needs to receive immediate targeted radiation treatment to slow the deterioration of the vertebra, prior to starting chemotherapy.
Philip is awaiting the results of a molecular study of his cancer to determine whether he is one of the 10% of people with adenocarcinoma of the lung who have the EGFR or ALK sub-types. These sub-types respond much better to a specific oral chemotherapy. The molecular study results are expected in about a week, but Philip probably won't have the implications explained to him until his next appointment with the oncologist in a fortnight's time (on 16 February).
Philip is being very philosophical in the face of this unwelcome news from the PET scan, taking the view that he has to play the hand he's been dealt.
On the positive side, the pain management medication is working well provided Philip gets top-up doses soon after he requests them. He still has limited appetite, but has gained one kilo, so he's now the right side of 60kg again.
Philip and Maureen liken Philip's discharge date to a chimaera: just as it seems within grasp it moves further away. It is still possible that he will discharged tomorrow (Wednesday 3 February) but he will stay in hospital longer if urgent radiation treatment is necessary for his spine.
Stay tuned for updates on the main philipbulletin page.
Calls and visits are still welcome!
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