We had a false start last week when the confirmed delivery changed to ‘delivery cancelled / not attempted’. Husband called the helpline, commendably calm and reasonable. They acknowledged an error but since they only deliver twice a week to this area he had to wait 3 days. He decided to make the most of the delay and enjoy grapefruit and marmalade.
Day 1 – The Ibrutinib is here! We read the leaflet together and Husband takes the plunge and swallows the tablet. I insist on accompanying him on a short walk with the dog in case he suddenly feels ill – slight overkill… He has slight nausea and a headache all day but feels broadly okay.
Days 2 and 3 – He has horrible headaches and paracetamol doesn’t help. He can’t sleep properly because of the headaches and because he needs to get up to pee pretty much every hour. We put it down to the Ibrutinib and hope that it doesn’t carry on like this. It’s really draining for him. He’s also having 2 or 3 nosebleeds daily, which is probably down to the WM. He just starts to bleed for no reason. They are relatively light and short-lived, much lighter and short-lived than they were when the cancer flared up nearly 3 years ago. But it’s horrible – it’s just a frequent reminder that something is terribly wrong. It’s not that he’s in denial about having cancer – far from it – but he really doesn’t dwell on it. He just thinks about it when he needs to, which is pretty much when he has a blood test or doctor’s appointment. Or when his body reminds him that it has cancer by bleeding.
Unsurprisingly he’s tired and really isn’t confident about how much he can do, even for a short walk with the dog. He doesn’t want me to drive him somewhere for a change of scene because he’d find it depressing if he couldn’t walk very far. He’s admitted that he can’t remember feeling this rotten, even when he was first diagnosed before treatment. Back then he could do things but had to do them very slowly. At the moment he’s really not sure what he can do at all. It’s a bit scary for him and rather depressing, even though he’s really not one to get down about things. I’ve asked him to be kind to himself in these early days of a new drug, to let his body have some time to adapt. But I know from my ME that not knowing what you can do (if anything ) and how long that will go on for is horrible. He’s used to being very active so this kind of non life, with weakness and headaches is pretty horrid for him. He’s really looking rather pale.
Day 4 – There’s a light back in his eye and he feels that he can walk the dog. He’s still getting headaches, primarily in the evening and early morning, but drinking more fluids and taking paracetamol now helps.
The specialist cancer nurse calls to check on how he’s doing. She’s brilliant – very knowledgeable and so human. Often patients on Ibrutinib also need Allopurinol but she’s checked with the doc and Husband doesn’t need it. Apparently it’s used when there are lots of cancer cells to break down so maybe it’s a good sign that Husband hasn’t been given it? He’s relieved anyway because he felt rotten on Allopurinol when he had it during his chemo.
Day 5 – The headaches are much better – no need for paracetamol now. Husband is still getting 5 or 6 ‘mini nosebleeds’ a day but they’re generally light and short-lived so he’s not too bothered.
Day 10 – His energy levels are a bit better. He says that he felt pretty spaced out for the first few days he was on Ibrutinib but he feels more like himself now. The headaches are easing and he’s getting better at managing them, drinking fluids when he feels one ‘threatening’.
He’s gradually drinking a bit more coffee (now that he isn’t having to pee every hour at night – he drank very little coffee in the first few days!) and is back to enjoying life, albeit in the slow lane.
Day 15 – Husband is really feeling more himself, working in the garden (so lucky to be retired!!) and able to walk the dog. He’s having a small glass of white wine in the evening (he hasn’t tried red yet) and has suffered no ill effects. The first night or two he felt a little light headed but subsequently he’s been fine – another of life’s pleasures reclaimed from the cancer.
He seems to be getting his life back, which is exciting. He’s hoping that the blood results will show things stabilising next time, if not going in the right direction. I think he’ll be worried if the blood results say something different to the way he’s feeling. Cancer is sneaky. But he assures me that he’ll be ‘gobsmacked’ if things aren’t improving. That’s pretty amazing after such a short time.
It’s very early days but Ibrutinib seems to be amazing for him. He just takes a tablet and pretty much carries on with his life. He’s a bit more sensitive to light, has to drink far more fluids than he’s used to and needs to manage his activity and energy levels but it’s all feeling very hopeful.