Time for a treatment change

Here’s a long-overdue update (since my last post this summer). Such as my GP – who I haven’t seen for about a year and met last week – you might be delighted to know what I’m still alive. That’s for the good news. The bad one, though, is that after 32 months on the same treatment, my November scan showed that the current approach is not effective anymore.

On the plus side, there are no new metastasis (and so, no new organs impacted). On the minus side, all measured lesions grew (lung, lymph nodes, etc.) between 1mm and 9mm each.

We’ve discussed the different options with my oncologist, and decided to stay on the same oral chemotherapy (Axitinib), but to titrate from 2*5mg daily to 2*7mg [1]. The max dose allowed is 2*10mg, but we’ll see first with next scan (in February) how the cancer reacts, but also – in the meanwhile – if my body can handle it. After about 2 weeks on it, it’s been brutal in terms of fatigue and lack of energy (combined with a bad cold just before starting – leading to a weight loss of about 3kg). I had blood tests yesterday and my hematocrit level are high again (so I’m having a venesection tomorrow). The good news is that it seems to be a biomarker of Axitinib efficiency, so… fingers crossed!

Since Axitinib is not a curative drug though, we’re thinking about other options. One would be to start another immunotherapy in parallel (probably Nivolumab). I’d love to try the Ipilimumab / Nivolumab combination that was recently approved for first line kidney cancer, but it’s unlikely to be reimbursed for second-line, so I need either to find a trial which includes it, pay for the 4 doses of Ipi – I was given a ballpark figure of 10,000€ each -, or see if a compassionate program can help. But I first need to get opinions to see if that’s worth considering – as I haven’t been a super responder with my previous immunotherapy, and – even though it showed a 10% complete response rate in its trial – over 60% of patients required steroids to handle side effects.

Anyway, if the new dose of Axitinib (with or without Nivo) works for a while, this could give me some time to look for new options – including upcoming trials. Short term, though, the challenge is to regain weight and energy, and be fit enough to handle the current dose, and possibly a new escalation, and other treatments.

“And mentally” you may wonder? Well, that’s been though too. I’m not really sure how I feel (do I still feel something at that stage?). I knew that Axitinib would stop working sooner or later (it’s not meant to be a “lifetime drug”), but it’s still been a huge disappointment. Even from a simple logistics point of view, switching before Christmas sucks (but hey, we’ve planned a big trip to Disneyland, and I won’t let the side effects make it miserable!). I think that I’ll feel better if/when I start another possibly-curative treatment (such as the immunotherapy mentioned earlier), even though I’m afraid to go in dark-mode for some time again if that one fails. So, I focus on short-term objectives to push myself through small milestones (trips, concerts, family events, etc.), and try not to think about the future too much.

That’s it for the update. I need to leave to make sure our elf on the shelf is doing well. Enjoy Christmas, and see you sometime next year for some (hopefully good) news!

[1] As I couldn’t switch dose within the trial due to previous side-effects, I had to leave it and continue on standard treatment. I’ll have less monitoring, and need to pay for the drug (capped at 124€ monthly with my other prescriptions thanks to the Drug Payment Scheme – one advantage of public health systems, considering they’re billed at more than 5000€ monthly), but that shouldn’t have much impact. I’m also staying in the same hospital / oncology unit, so I’m confident I will be well taken care of. And overall, I’m glad that my participation in the trial (on top of providing me a great drug combination) helped to gather evidence that Pembrolizumab + Axitinib was a game-changer for kidney cancer and that it will be soon available in Europe for newly-diagnosed patients.