Tag Archives: dexamethasone

Life without the Madagascar Periwinkle

It feels a bit strange to be back at Great Ormond Street after 3 months away. Henry has continued to have the weekly blood tests but there has not been much to report. This is of course a wonderful thing.

1

That’s not to say things have been event free. There was a vomiting bug which a year ago would have wound us up nicely. But Henry seemed to recover from it faster than many of his classmates and it didn’t send us into hospital.

And then there was an allergy scare in March. The doctors were worried about the low levels of oxygen in his blood. We thought he might have been allergic to one of his chemotherapies. That would have been highly unusual and bad news. Henry is getting less than the normal treatment because of the clinical trial he’s in. With a disruption to the chemotherapy, we could have been back onto the normal protocol which is much harder. That would have meant monthly vincristine and its steroid henchman dexamethasone.

Vincristine comes from the Periwinkle

The periwinkle is the source of vincristine’s oomph.

Although it’s a drug derived from the rather lovely periwinkle, vincristine’s side effects are not so charming – hair loss, muscle and joint pain, nausea.

The allergic response was to a drug he takes each week to prevent a type of pneumonia that can strike patients with compromised immune systems. The drug, Dapsone, is usually used to treat leprosy… and it did something his red blood cells were not keen on. So now Henry is back on his old foe Septrin – which he hates. But by giving it to him in crushed tablets and calling it by its compound name co-trimoxazole we’re now getting it down him.

In fact the medicine refusal has largely disappeared.

The most dramatic change has been on Henry’s hair. This has come back beautifully blond and continues to spiral out of control – to his annoyance and our delight.

We’ve been very poor bloggers. It must be 8 or 9 months since we last posted. But it is a sign that things can return to a normality that we post so infrequently.

Today Henry is in for a general anaesthetic so they can put methotrexate into his spine. I was thinking yesterday that we were getting used to this. But that’s not possible. While Henry is taking it in his stride, the prospect makes me feel distinctly queasy. Celia and I are not clasping each other for reassurance as we did when he was first put under. But there’s nothing normal about it.

2 July 2014

Advertisements

Leukaemia’s summer cocktails

We’ve been thinking a lot about side effects recently.

Henry has just begun a new stage of treatment: delayed intensification.

Henry starts his dex again

Henry starts his dex again

And as the name suggests, it means a lot of medicines. For this stage we’re joined by some old “friends”: dexamethasone, vincristine, asparaginase, cyclophosphamide, cytarabine, mercaptopurine, methotrexate as well as a new one: doxorubicin. (After a complete refusal of the synthetic banana-flavoured antibiotic septrin, Henry is now happily taking dapsone as well as the anti-viral aciclovir.)

Henry and Celia had a morning broiling yesterday at Safari Ward on the ninth floor at Great Ormond Street. It’s not a ward well suited to the current sunny spell as it gets very, very warm. Henry was in for his intrathecal methotrexate (a chemotherapy injected into his spine under general anaesthetic). I joined them as I wanted to talk to Henry’s consultant about the side effects of all these medicines. Ironically, our discussion was interrupted by Henry who reacts strongly when he wakes up after anaesthetic, and violently when the strong steroid, dexamethasone, is thrown into the mix. He was rage-filled and not to be reasoned with. He was bleeding. He had injured himself after falling off his scooter last week. And the scabs opened up when he hit his mum. After I was dragged from the consultant’s room, I got a quick punch in the face.

Dex also brings on a big appetite

Dex also brings on a big appetite

I’m writing this because it demonstrates the strong side effects these drugs can have. Fortunately these violent, character changing ones are short term and they do not last long. Henry calmed down quickly and was able to come home.

It’s the side effects you can’t see immediately, and those side effects that may not come for years that are more of a cause for worry.

A couple of weeks ago I stumbled across a supplement to the scientific journal Nature. This special – Nature Outlook – focuses on leukaemia.

There is a superb video, which is part of the online supplement, and I would urge anyone to watch it:

http://youtu.be/kmAUYKledZg

There was also an article that brought home the brutality of the leukaemia treatment regimen for children: Drug safety: double jeopardy. It left me speechless and drained (here is a warning: if you have stumbled on this blog because your child has leukaemia – think carefully before you read the Nature piece. It is hard going). The article focuses on the long-term side effects of the leukaemia treatments. They are manifold, serious and unpleasant. They include other cancers and heart disease. And as ever with leukaemia, you are playing with odds you would not choose. It reminds me that we are, as cheerfully as possible, asking Henry to take medicines that could cause him huge problems in his adult life. They might not. They might. The enormity of this disease is staggering. And our ignorance is terrifying. It should be noted that the most serious effects in the article relate to people who were treated as children and are now in their forties and fifties. And as the protocols and treatments are refined the long term outlooks will change and improve. They are certainly very different for Henry than for a child being treated 40 years ago. But his treatment is a balancing act and it is uncertain. The doctors have to weigh up the risks of the drugs with their benefits – and reduce the toxic effects where they can. This is one of the aims of the trial Henry is part of.

Yet the contrast is remarkable between our fretfulness over this unseen future and our admiration of how Henry is handling the treatment now. Apart from his response to the dex and anaesthetic, he is a cause for huge optimism.

People continue to say to us that apart from his pallor and his thin hair, it would be difficult to tell he is sick.

The boys ride on Bournemouth pier

The boys ride on Bournemouth pier

Last week, we managed a week’s holiday in Dorset during a break in treatment. Henry swam for the first time in six months, he played in the sea, and he took his meds. And on the last day of his holiday he picked up the grazes I mentioned earlier – the kind that all children should sustain. He fell off his scooter while careering down one of Bournemouth’s sloping chines that lead to the sea. It all came from the growing normality mentioned in the previous post.

Whatever happens over the next few weeks we know that in September, Henry will move onto maintenance – two-and-a-half years of one daily and one weekly chemotherapy as well as quarterly intrathecal methotrexate.

It won’t be plain sailing and it won’t be easy. But if all goes to plan, it will be better.

Playing in the sea at Bournemouth

Playing in the sea at Bournemouth