H started a daily course of radiotherapy early last week on the tumour on top of her head. I went along for the first session and was allowed in the room until just before they turned the machine on. This one is less technological: there's nothing sophisticated worth doing, they're just irradiating a circle centred on the tumour.
H will have a break for a few days now to avoid interaction with tomorrow's chemotherapy, then more radiation next week. The end result will be that the tumour will, we hope, stop growing and eventually shrink, and that H will have a bald patch around it. This is worth it because there's a danger that the tumour would ulcerate - break through the skin - if left untreated.
We looked at getting an intralace wig, which seems like a good option if you've got a bald patch with sufficient hair around it. But there's not much point if H is going to have to switch chemotherapy soon to something that makes her bald.
Wednesday, 28 September 2011
Prognosis
We had a meeting with H's consultant today: for the first time H asked about her prognosis. She asked because we've been planning some home improvements and H is thinking about how the building timetable might interact with her disease timetable.
The consultant was willing to be frank, but not specific. She says that she thinks over the next two or three months Caelyx will become less effective in inhibiting progression. In due course she'll switch H onto Paclitaxel. And when that stops working, she'll try Pazopanib. At some point nothing will work.
Meanwhile the consultant thinks it better to treat H with as much Caelyx as she can tolerate than to ease up for surgery on the lung metastasis. Additionally the surgeon she consulted is concerned that there may be adhesions resulting from radiotherapy that would make it more difficult to remove the tumour. Radiofrequency ablation is another option, but again the consultant would prefer not to risk delaying chemotherapy. Her recommendation is that we not worry about the lung met for now: she's more concerned about suppressing further metastases.
Meanwhile, H thinks the injection she had to her neck has improved her arm a bit, but not as much as she'd like. She wants the neurosurgeon to give further consideration to microdiscectomy.
H talked to her GP about her sore toenail. He's willing to cut some of it off, but concerned that it may take months to heal.
My guess is that she'll accept her consultant's treatment recommendation. And leave her toe alone. And we'll go ahead with the building work.
The consultant was willing to be frank, but not specific. She says that she thinks over the next two or three months Caelyx will become less effective in inhibiting progression. In due course she'll switch H onto Paclitaxel. And when that stops working, she'll try Pazopanib. At some point nothing will work.
Meanwhile the consultant thinks it better to treat H with as much Caelyx as she can tolerate than to ease up for surgery on the lung metastasis. Additionally the surgeon she consulted is concerned that there may be adhesions resulting from radiotherapy that would make it more difficult to remove the tumour. Radiofrequency ablation is another option, but again the consultant would prefer not to risk delaying chemotherapy. Her recommendation is that we not worry about the lung met for now: she's more concerned about suppressing further metastases.
Meanwhile, H thinks the injection she had to her neck has improved her arm a bit, but not as much as she'd like. She wants the neurosurgeon to give further consideration to microdiscectomy.
H talked to her GP about her sore toenail. He's willing to cut some of it off, but concerned that it may take months to heal.
My guess is that she'll accept her consultant's treatment recommendation. And leave her toe alone. And we'll go ahead with the building work.
Thursday, 8 September 2011
Six months
It's six months since diagnosis. H has got neuropathic pain in her left arm, like bad pins and needles, occasional stabbing back pain when she runs, a sore toenail, and assorted cuts and bruises that heal slowly. And she's recovering from a cold.
On Monday she had a PET scan. There was good news: the tumours in her vertebrae are showing no activity: apparently the radiotherapy has stopped them for the time being. So the fear that she will be paralysed by spinal cord compression has receded. She has one active tumour in her lung, and two on her scalp - one very obvious one on top of her head, and a smaller lump on the side of her head.
It should be possible to stop these lumps growing too with some sort of radiotherapy: H is considering the technological options. Treating the lung tumour will cause some collateral lung damage, and treating the scalp tumour will leave bald patches. We're looking into ways to conceal them.
If all the significant tumours can be stopped, H can go on less frequent chemotherapy, allowing her general health to improve. She had chemotherapy today, and will have more in 3 and 6 weeks if her platelet and neutrophil counts hold up. Then we'll think again.
Regarding the symptoms I mentioned at the start. The neuropathic pain can plausibly be attributed to some combination of radiation myelopathy, which should improve with time, and a bulging cervical disc unrelated to the cancer. H may have a nerve injection to reduce the discomfort. The stabbing pain in her back may be caused by a bare rib-end where the bone has been eaten away. And she may take her somewhat ingrowing toe-nail to her GP. So it's all minor, albeit unpleasant to live with.
Overall, things now look much better than we expected they would. There's no prospect of a cure, but there is some time.
On Monday she had a PET scan. There was good news: the tumours in her vertebrae are showing no activity: apparently the radiotherapy has stopped them for the time being. So the fear that she will be paralysed by spinal cord compression has receded. She has one active tumour in her lung, and two on her scalp - one very obvious one on top of her head, and a smaller lump on the side of her head.
It should be possible to stop these lumps growing too with some sort of radiotherapy: H is considering the technological options. Treating the lung tumour will cause some collateral lung damage, and treating the scalp tumour will leave bald patches. We're looking into ways to conceal them.
If all the significant tumours can be stopped, H can go on less frequent chemotherapy, allowing her general health to improve. She had chemotherapy today, and will have more in 3 and 6 weeks if her platelet and neutrophil counts hold up. Then we'll think again.
Regarding the symptoms I mentioned at the start. The neuropathic pain can plausibly be attributed to some combination of radiation myelopathy, which should improve with time, and a bulging cervical disc unrelated to the cancer. H may have a nerve injection to reduce the discomfort. The stabbing pain in her back may be caused by a bare rib-end where the bone has been eaten away. And she may take her somewhat ingrowing toe-nail to her GP. So it's all minor, albeit unpleasant to live with.
Overall, things now look much better than we expected they would. There's no prospect of a cure, but there is some time.
Friday, 5 August 2011
Pins and Needles
We watched an outdoor production of Macbeth on Monday: I was glad to have seen it but I thought it tactless of him to soliloquize on the theme "she should have died hereafter".
H was troubled by pins and needles in her feet: she's had episodes of this before, particularly when bending her neck, but this was worse. She suspected a new growth impinging on her spinal cord, and feared imminent paralysis. The hospital gave her an MRI scan on Tuesday morning, which happily showed no progression and no new spinal lesion.
This may be a side effect of the radiotherapy she had in March - "transient radiation myelopathy".
H was troubled by pins and needles in her feet: she's had episodes of this before, particularly when bending her neck, but this was worse. She suspected a new growth impinging on her spinal cord, and feared imminent paralysis. The hospital gave her an MRI scan on Tuesday morning, which happily showed no progression and no new spinal lesion.
This may be a side effect of the radiotherapy she had in March - "transient radiation myelopathy".
Friday, 29 July 2011
Talking to Children
On Wednesday we lay down on our bed with I&S and told them that H's bad back is caused by cancer, and that the doctors can't make it better but are giving H medicine to try to stop it getting worse.
We answered all their questions but they didn't ask about death, so we didn't say anything. S said that she'd seen a television programme where they could cure cancer, so we told her that not all cancer is the same but mummy is a cancer doctor herself and will get the best possible treatment. IA* said shouldn't we tell the other boys, so we told them we already had.
They realised it was serious, if only from our tone, and they both know already that people can die of cancer, but we had lots of hugs and they seem to have taken it very well.
About an hour later IA remarked on the lump on H's scalp, which he's not noticed before. So the conversation seems to have been well-timed.
Yesterday we took S to meet her best friend, who lives 20 miles away so they don't meet very often, in a park halfway between us (next to S's former school). Within minutes the friend came up to me and asked whether H has got cancer. Which she has.
*using initials to identify a grammatical subject goes wrong when the initial is 'I'. Hence 'IA'.
We answered all their questions but they didn't ask about death, so we didn't say anything. S said that she'd seen a television programme where they could cure cancer, so we told her that not all cancer is the same but mummy is a cancer doctor herself and will get the best possible treatment. IA* said shouldn't we tell the other boys, so we told them we already had.
They realised it was serious, if only from our tone, and they both know already that people can die of cancer, but we had lots of hugs and they seem to have taken it very well.
About an hour later IA remarked on the lump on H's scalp, which he's not noticed before. So the conversation seems to have been well-timed.
Yesterday we took S to meet her best friend, who lives 20 miles away so they don't meet very often, in a park halfway between us (next to S's former school). Within minutes the friend came up to me and asked whether H has got cancer. Which she has.
*using initials to identify a grammatical subject goes wrong when the initial is 'I'. Hence 'IA'.
Wednesday, 27 July 2011
Hypothermia
We went on holiday to Cornwall last week, with I&S (the other boys were still at school). On the Monday, we'd booked a surfing lesson. The weather - driving wind and rain - was perfect in the eyes of our instructor, but a bit on the cool side for us.
After the lesson, we got most of the way back to the surf shack (in the grounds of our hotel) before it all got too much for H and she sat down at the side of the path unable to go on. But after a rest, and encouraged by a kind dog-walking lady, she managed to totter the rest of the way to a hot drink at the shack, and thence to a long hot bath.
I was rather shaken. It's easy to forget that she's not physically as strong as she was. In future I shall try to dissuade her from doing physically challenging things other than ones she's really keen on.
After the lesson, we got most of the way back to the surf shack (in the grounds of our hotel) before it all got too much for H and she sat down at the side of the path unable to go on. But after a rest, and encouraged by a kind dog-walking lady, she managed to totter the rest of the way to a hot drink at the shack, and thence to a long hot bath.
I was rather shaken. It's easy to forget that she's not physically as strong as she was. In future I shall try to dissuade her from doing physically challenging things other than ones she's really keen on.
Saturday, 16 July 2011
Radiotherapy
I see that I forgot to mention that H has had a fortnight of radiotherapy (ten treatments) to her neck. We don't want to take any chances on spinal cord compression that high up.
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