If you haven’t read the lead up to this point, it is worth catching up here.
Jump to the most recent update on this page here.
Thankfully the NHS application process for Trametinib (1), (2) was successful and things have moved along quite quickly in light of this. This is Eleanor’s fourth chemotherapy regimen. Trametinib is otherwise known as a BRAF Inhibitor or ‘targeted therapy’, a Multikinase Inhibitor, it is essentially a chemotherapy but is slightly different in makeup and toxicity to the body. This particular drug costs in the region of £3,000 to £4,000 per cycle or almost £100 a tablet! In Eleanor’s unique case (all cases are unique to each patient), she will take 42 tablets over 28 days – which counts as one cycle, so we are grateful that this advanced medication has been compassionately approved.
Eleanor began this 24 cycle protocol on 26th May 2021. This page will be updated as the course of her treatment progresses, so please, if you are following with interest, do keep coming back here for more detailed updates over and above what you may see on social media.
As with most treatments, Eleanor is potentially going to face side effects, possibly severe ones, and with this particular drug these need to be monitored very closely. So in order to begin this treatment lots of tests are required, to establish current baselines…
- Detailed 3T MRI Scan (Head & Spine) @ 1mm slices – completed 18.05.21 @ The Royal Marsden
- Extensive blood tests – completed 18.05.21 @ The Royal Marsden
- ECG – completed 21.05.21 @ Evelina Children’s Hospital
- Echo Cardiogram – completed 21.05.21 @ Evelina Children’s Hospital
- Hand Xray – completed 26.05.21 @ The Royal Marsden
- Urine Test – completed 26.05.21 @ The Royal Marsden
- Detailed skin examination – completed 26.05.21 @ The Royal Marsden
Aside from the regular check-ups, the regimen consists of very small film coated tablets (not much bigger than a grain of rice), taken once daily, at home. Because of the tablet’s size (as in medication amount, not physical size), Eleanor’s dosage means she will have to take one tablet on alternate days and two tablets on the other days. This means Eleanor will take 42 tablets per 28 day cycle. Strictly one hour before food or two hours after. We have decided that evenings after dinner are the easiest time for Eleanor to take her tablet/s. In the first cycle (the first 4 weeks), weekly checkups and tests are required to ensure any side effects (if any) are caught early.
If this medication is tolerated well, Eleanor will take up to 1008 tablets over the next 672 days!
26th May 2021 – Cycle 1 start! We attended The Royal Marsden with Eleanor for her to undergo more baseline tests (detailed above), go over some final questions and to collect the prescription for the first cycle of Trametinib. Eleanor’s first dose was given at around 9pm (this was over 2 hours after her dinner was finished) and she decided herself to start by taking the 2 tablet dose. A moment to be remembered, we have come a long way to get to this point and Eleanor has been through an awful lot (an understatement) over the past few years. Let’s hope that this is really the start of being able to get this disease under control.
2nd June 2021 – 11 tablets down of 42 and 7 days in to treatment cycle 1. Nothing to report. Attended the Royal Marsden for Eleanor to undergo a full and comprehensive set of blood tests, weight & height observations and a medical review.
9th June 2021 – Eleanor had her regular weekly appointment at The Royal Marsden in the afternoon, to undergo a full and comprehensive set of blood tests, weight & height observations and a medical review. Now that Eleanor is halfway through treatment cycle 1 (21 tablets taken of a potential total of 1,008, 14 days in or 658 days to go)… she is starting to experience a common side effect from the Trametinib; the skin on her face is showing redness and clusters of small spots down the centre line, around her nose and on her chin – it all looks quite angry at times. Not as obvious is her scalp which is completely covered in spots and often quite itchy. We have already been given creams and antihistamine medicine to try and fight back at these effects, so we have been instructed to start using them as of now.