Avastin Diary 2 – First Treatment

This is the second instalment of the Avastin diaries blog series. To read the first, click here.

 

Avastin Diary – First treatment

23^rd March 2023 – the date will be imprinted on our minds for all the wrong reasons because this was the day we started Avastin (immunotherapy) treatment for Oscars progressing NF2 in the hope that we can halt the growth of his left Vestibular Schwannoma, the cystic Ependymoma and preserve his hearing.

The day started with a text from the oncology day-care ward mentioning there may be a supply delay when we get there.

We arrived about 11am and the oncology staff were expecting us – I didn’t catch the name of the nurse looking after us for the day. There was some nice comfy chairs to wait and there were a few others in the department also having treatment. The nurse told us about the department, where the toilets were, kitchen and the playroom and she checked Oscar’s Temperature, BP and pulse rate.

We met the duty doctor Dr Emmanuel who asked a few questions to Oscar mainly about mobility and coordination and listened to his chest & heart.

Oscar then had his cannula put in using numbing spray and they did a blood test.

NB – Instead of having a cannula at every visit you can ask about having a port line – I explained this on the 1^st blog which you can read here

NB – If your little person does not like needles etc you can have numbing cream (EMLA) or spray which numbs the area before they insert the cannula

Oscar said he didn’t like the spray so next time we will get EMLA numbing cream and perhaps put it on at home.  He was also asked to do a urine sample.

Dr Emmanuel then advised Oscar would need a bone x-ray – which determines Oscar’s “bone age” – so if you are having your first visit for Avastin you MAY need a bone x-ray. Luckily the children’s x-ray department was not busy so we got straight in for this.

Back on the daycare ward we briefly saw our Outreach nurse Carly and she came to check we were ok.

After a very very long wait (5 hours) amongst all the tests and x-rays etc, we finally got the go ahead to start our first infusion which was delayed due to blood test results taking approx. 3 hours to be returned and delay in getting the treatment from the pharmacy.

The infusion took 1.5 – 2 hours.

Altogether we were in the daycare ward for 7 hours! – it was a mammoth day!

Thoughts for our next treatment

• Get your oncology team to refer you to the community nurse – they will do blood tests the DAY BEFORE Avastin treatment (this will greatly reduce the amount of waiting around). From now our community nurse (Sam) is doing Oscars blood tests during school time AT school the day before treatment.
• Take a packed lunch & snacks and some drinks with you – it’s a very long day! Drinking is especially important for those taking Avastin.
• Make sure phones are fully charged (or take chargers with you)
• Take something to “do” …. A book, school work or something else – there is A LOT of waiting around. A children’s ward is likely to have a playroom/toys/books/lego etc for children which might keep them occupied.
• Put numbing cream on prior to going to the daycare ward

One of the side effects that many told us about is tiredness and fatigue after treatment. Oscar wasn’t particularly affected by this on our first visit, but its something we will look out for in future.

The community children’s nurse visited us at home to arrange getting Oscar’s blood tests done in school the day before treatment.

 

Next time – School meeting and Avastin no. 2

 

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