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First Line Chemotherapy – SIOP LGG 2004…

This chemotherapy protocol is called SIOP-LGG 2004 this is the protocol that is typically used for this type of Brain Tumour as a first line of treatment/defence. It has two parts, an induction phase and a consolidation phase.

The induction phase comes first and lasts for 24 weeks. Chemotherapy treatments are carried out each week in the first 10 weeks, then on week 13, 17 & 21 with a progress MRI scan on week 24.

Almost as a soon as the induction phase is over, the consolidation phase commences (week 25). It consists of cycles that last 6 weeks with treatments carried out each week for the first 3 weeks of each cycle then 3 weeks of rest and recovery whilst the chemotherapy is active. The consolidation phase lasts for 10 cycles or approximately 60 weeks, so that’s just over a year!

The main chemotherapy drugs involved are Carboplatin & Vincristine – we call the Carboplatin a ‘big’ treatment and the Vincristine a ‘little’ treatment despite them both being very toxic chemotherapy drugs. The Carboplatin is given to Eleanor via an IV drip over the course of 1 hour. The Vincristine is given to Eleanor via a ‘push’ from a large syringe which takes about 30 seconds. Every time Eleanor has a chemotherapy treatment, she always has a Vincristine ‘push’ too.

After a little while of having Carboplatin, Eleanor had a very nasty allergic reaction to it, so the Carboplatin chemotherapy drug has been switched to Cyclophosphamide & Cisplatin on alternating treatment cycles, which makes it all the more confusing. Eleanor can no longer have Carboplatin.

The Cyclophosphamide is given to Eleanor over the course of 1 hour via IV drip and Cisplatin over the course of two 3 hour IV drips. These two new drugs require other preventative medicines and fluids to be given after or inbetween treatments, so they require multiple overnight stays in hospital.

To make it a little easier, we’ll refer to the chemotherapy drugs as Carbo., Vinc., Cisp. & Cyclo. from now on.

All the chemotherapy is given to Eleanor via a line, which at each treatment is attached to her portacath.

To give you an idea here’s what drugs Eleanor has had and where she is currently at with her treatment…

 

Induction Phase (started 16.01.15) – COMPLETED
Weeks 1, 4, 7 & 10 – Carbo. & Vinc.
Weeks 2, 3, 5, 6, 8, 9 – Vinc.
Week 13, 17 & 21 – Carbo. & Vinc.

 

Consolidation Phase (started 03.07.15) – COMPLETED
Cycle 1
Week 25 – Carbo. & Vinc. (When Eleanor had an allergic reaction!)
Week 26 & 27 – Vinc.

Cycle 2
Week 31 – Cyclo. & Vinc. (Overnight stay!)
Week 32 & 33 – Vinc.

Cycle 3
Week 37 – Cisp. & Vinc. (Three nights stay in hospital!)
Week 38 & 39 – Vinc.

Cycle 4
Week 43 – Cyclo. & Vinc. (Overnight stay!)
Week 44 & 45 – Vinc.

Cycle 5
Week 49 – Cisp. & Vinc. (Three nights stay in hospital!)
Week 50 & 51 – Vinc.

At this stage, after a whole year of treatment, we discussed stopping and going on ‘watch & wait’, but as Eleanor has coped with the side effects so well (so far), it was decided to continue, either until the end of this phase or until the toxicity was too much for her.

The following cycle started on 29th January 2016 (alternating the main drug from the previous cycle)

Cycle 6
Week 55 – Cyclo. & Vinc. (Overnight stay!)
Week 56 & 57 – Vinc.

Cycle 7
Week 61 – Cisp. & Vinc. (Three nights stay in hospital!)
Week 62 & 63 – Vinc.

Cycle 8
Week 67 – Cyclo. & Vinc. (Overnight stay!)
Week 68 & 69 – Vinc.

Cycle 9
Week 73 – Cisp. & Vinc. (Three nights stay in hospital!)
Week 74 & 75 – Vinc.

The follow cycle is the last in this regime, started 15th July 2016

Cycle 10
Week 79 – Cyclo. & Vinc. (Overnight stay! Sickness expected)
Week 80 & 81 – Vinc.
During Chemotherapy Eleanor had weekly blood tests, usually on a Wednesday (at home or school) and when her treatment weeks come around, the chemotherapy is usually given or started on a Friday. Eleanor also has MRI scans throughout her treatment cycles, about every 3 months to monitor changes, if any, to her tumour. The MRI scans will continue indefinitely.

There are many other tests Eleanor has from time to time for hearing, eye sight, cognitive ability, hormones, kidneys & to check Eleanor’s general health, the list is endless.

With all of the above in mind, Eleanor never really truly gets a break from treatment, but that is the idea, to keep on hammering away at shrinking the tumour. Each chemotherapy treatment is not actually active in her body until 10-14 days after it is given. The 3 week ‘breaks’ in the consolidation phase are to let the chemotherapies take their course, unfortunately at the same time as trying to shrink the tumour, it all takes its toll on her general health so staying away from illness and infection is very important. Eleanor must stay as healthy as she can too, so eating as healthily as possible and drinking plenty is important.

Now that her initial chemotherapy regime is over with, her tumour initially had still not changed, at least since we started out on this life changing journey of treatment and tests. Whether the chemotherapy has been effective in halting growth is anybody’s guess, even for the experts. Eleanor will continue to have an MRI every 3 to 4 months to monitor progress, if any.

The damage has also extended to her hormone centre, the pituitary gland, so she also has to endure a nasty intramuscular injection every 4 weeks until she is approximately 11 years old.