Fourth Line Targeted Therapy
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.
18th June 2021 – Eleanor has been taking the Trametinib tablets each night, exactly as prescribed, either one or two depending on the night. We have also been complimenting this regime with Chlorphenamine (Piriton) three times a day. The spots on her face and scalp persist, but seem to have eased ever so slightly.
Eleanor’s review appointment this week was postponed to the Friday (usually Wednesdays) because it made more sense to combine her Echo Cardiogram with the medical review appointment and blood tests, all at the same hospital. Typically these conveniences never seem to go smoothly, or go our way… at the last minute, the day before, we were told that the Echo Cardiogram machine wasn’t working correctly, so that part of our appointment was cancelled!
Most importantly Eleanor’s heart needs to be closely monitored, so along with the Research Team at The Royal Marsden, we managed to arrange for an Echo Cardiogram to be taken at London’s Evelina Children’s Hospital at the last minute. It meant some running around but at least everything required would still be carried out on the day it was due to be.
Thankfully everything went to plan and we headed to The Royal Marsden first thing in the morning for Eleanor’s blood tests and medical review. Once that was all done we headed to Evelina for a 12.00 Echo Cardiogram appointment. We probably spent more time in the car than we did at actual hospitals!
23rd June 2021 – Not a great deal to report from this hospital visit. Extensive bloods were collected as before and Eleanor’s skin was checked over. We are still reporting bouts of angry spots on her face down the centre line, and in her scalp, but these have calmed a little over time. We must keep on top of a new daily skin care regime and a regular scalp treatment.
30th June 2021 – Eleanor attended hospital today for a very detailed dermatological examination and to collect prescriptions of specialist creams to specifically treat her face & scalp, some of these creams can also be used on her body but we haven’t needed to use anything there yet. A whole raft of different bloods were also taken, continuing to monitor her health and overall body chemistry.
21st July 2021 – Cycle 3 start; time seems to pass so quickly and Eleanor is already beginning her 3rd cycle of 28 days treatment (42 tablets). At each of these cycle starts we have to visit the hospital to pickup the next months supply of medication and Eleanor gets an extensive set of blood tests, a urine test and a medical review at the very least.
18th August 2021 – Cycle 4 start; another month flashes by but this time a slightly busier one.
Eleanor had her MRI 2 days prior to this appointment and today we learned of the preliminary results of that scan! Her disease is mostly stable, with some very minor shrinkage to the smaller of the two brain tumours she has. We’ll take that, despite hoping for a little more considering all that she has been through to get to this point, we’ll absolutely take that!
During the course of the past month Eleanor has also had a hearing test, eye test, dermatology follow up, her monthly injection and an echo cardiogram! We haven’t sat still for a minute!
More to follow…
15th September 2021 – Cycle 5 start; yet another month done!
Not such a busy month, mostly Eleanor has been getting on with life. This treatment regime certainly affords her (and us) a little relief from continuous hospital visits and we have been able to return our lives to a little of our ‘normality’ or perhaps everyone’s normal reality since we are all still in the midst of a global pandemic!
Side effects still continue; Eleanor’s skin seems a lot better but flares from time to time, her hair is thinning quite dramatically and is growing out in a new colour (platinum blonde). These are expected side effects so we aren’t shocked, of course we aren’t pleased with any side effects but we have learned to live with them. Side effects are not a sign that a treatment may or may not be working, side effects are side effects, and this is the same with all chemotherapies and targeted treatments.
More to follow…