Last Monday Philip had his first appointment at the Canberra Region Cancer Centre (at Canberra Hospital) since radiation treatment. While not as geographically convenient as Calvary Hospital it is a big improvement to get 'plugged into' the Oncology support services at TCH.
First he saw a registrar, Dr Bella, because Dr Ali is on leave. (My experience over many years in various hospital departments is that registrars have much better communication skills than specialists generally. Do they lose these skills as they progress up the career ladder?) She took an entirely different approach to Philip's pain management to that set up by his GP. She explained that his spinal pain was the major problem affecting his ECOG (performance, or wellness) rating, where Philip currently sits at 3 on the scale which goes from 0 (the best score) to 5 (where you are dead). So he needed a different medication which targets neurological pain.
Because his weight has dropped further to 56 kg (no appetite and feels nauseous so hasn't been eating) he is to take Maxolon to combat nausea. It is important to put on muscle not just by eating protein but by going to the cancer group exercise physiology class at UC.
He is continue to take the targeting the anti-cancer Tarceva at 100 mg and hopefully this will be upgraded to the more desirable dose of 150 mg later, depending on how it is tolerated. Bella was confident that it was working on the cancer as Philip "would be much worse" if it were not. This was very encouraging. He is to have another CT scan before the next appointment on 11 May.
At the end of the consultation I asked about his anaemia, Bella said it was much improved with a 112 haemoglobin level (was under 80 in Jan/Feb) and an improved blood cell size or 80 (was 67). I am not sure how these figures compare with normal levels but any improvement is welcome.
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We were unable to meet Nicole Taylor, the lung cancer nurse practitioner who, Dr Bella told us "will become Philip's best friend" but we did meet with Anne Booms, a nurse practitioner who, Bella told us, is "the queen of pain". She is a personable woman with a European attitude to personal space (i.e. she gets up very close) but one soon gets used to that. Her aim is to give patients better quality and better quantity of life.
She explained that the Fentanyl pain patch was doing nothing for the spinal (nerve) pain and was not working as well as it might because it needs fat for uptake (and Philip hasn't got any fat). Also it is best for stable pain but not for variable pain. A morphine-based medication is better, also because it works on the lungs (breathing and cough, if any.) So she recomended Jurnista (one-a-day tablet) supplemented by Dilaudid (hydromorphone hydrochloride) liquid for any breakthrough pain.
Specifically for the spinal (neurological) pain, Lyrica (one capsule at night) works better than an opioid. If this pain can be got under control he might be able to cut down on the opioid. It takes 3-5 days to work, however. Anne promised to phone every day to see how things were going.
Anne has put Philip on the books for the Palliative Care Home Team doctors. They will organise a recliner chair (relieves pressure on the spine) and possibly a shower seat. We have yet to find out if they will call us or we call them.
At the end of these two sessions Philip was too whacked to go to the cancer group Exercise Physiology class at UC but will begin today Wednesday. It is two days p.w. I know Kellie (who runs it) through her previous involvement with Lungs in Action and she will be very good, I think.
Today Philip is much better than yesterday when he could only sleep through the day and hardly ate a mouthful. But he has eaten an egg, some fruit, half a bottle of Fortisip and some macaroni cheese so far today and this is the biggest intake for some time. He seems to be able to get down soup easily so I am making that in industrial quantities. If his nausea is controlled then he should be able to eat more.
So some good news, and some signs of improvement. Will keep you posted, as the phrase goes.
Maureen
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