Day 11 of the clinical trial, and I’m eventually feeling good

Today is Daffodil Day but it’s also the 11th day of my treatment – under the experimental branch of a clinical trial. The first week was a bit so-so, but thanks to the correct painkillers, I finally feel fine.

After a last minute inconvenience [1], I was accepted to the trial on Monday 13th of March, and randomised in its experimental arm. This one combines immunotherapy (one injection of Pembrolizumab every three weeks) to let my immune system fight cancer cells, and anti-angiogenesis (2 pills of Axitinib every day) to prevent their growth. I’ll have to wait for the first scans to see how that works, but I’m relieved to try this experimental treatment.

The trial’s experimental vs standard arm. Source: http://www.10forio.info/clinical-trials/keynote-426

Both drugs have a large number of side effects. After 11 days, here are the most noticeable things so far:

• Day 1 (Monday): This was a particularly emotional day (it’s all real now: I have a treatment), but I didn’t feel anything special after the infusion;
• Day 2 (Tuesday): I woke up in good form, not too tired, but with a broken voice – one of the multiple side effects, but definitely not the worst one;
• Day 3 (Wednesday): I felt strong pain in the back and abdomen, which Tramadol couldn’t calm. I was told to top-up with Lyrica, and Doliprane – which surprisingly helped, but took a while to be effective;
• Day 4 (Thursday): I woke up with itching and violet feet. A short walk calmed them down, and an hospital visit confirmed it was nothing to worry about. Blood pressure and temperature were still OK;

Violet feet #nofilter

• Day 6 (Saturday): Abdomen pain was getting worse. The on-call oncologist suggested to top-up my Lyrica dose, leading to 50mg of Lyrica every 8h, and 100mg of Tramadol every other 8-hours, with a 4h gap, plus Doliprane in case of emergency. This worked well during the day, but pain woke me up every 30min at night, even with sleeping pills. Also, skin started cracking around my mouth and nose;
• Day 9 (Wednesday): During the first trial check-up, the team decided to give me a 5mg morphine pill every 12h – plus on-demand 5mg fast action ones up to 4 times a day – to ease the pain, instead of the Tramadol. This seemed to do the job, and the additional morphine pill before going to bed was perfect – first time in months I could enjoy pain-free hours of sleep!
• Day 10 (Thursday): I woke up in great form, managed to catch-up with work and personal items. The voice seemed to be back a bit, but red spots appeared on my tongue and inside mouth, in spite of the mouthwash;
• Day 11 (Friday): I feel good, not tired. Back to work for meetings and catch-up, and hope to be there full time from next Monday. Heading home early to enjoy the sun with the family.

[1] A blood test value was off-threshold for trial acceptance, so I had to stop all post-op drugs (except Nurofen) as they impacted my blood – before eventually retrying it successfully a week later. Needless to say that the week w/o drugs was not fun at all, between tiredness and pain.