Tuesday 2 July… Rollercoaster time

Well, an emotional roller coaster! I had a quiet weekend – still a bit shocked and upset that the ibrutinib had stopped working after on 4 months. I suppose I should have remembered that studies have shown that it is less effective in relapsed cases. I slept badly over the weekend but I was hopeful that the combination of rituximab and ibrutinib would continue to be effective, so I was looking forward to having the blood test and results yesterday.

Unfortunately the blood resuts showed that my white cell count had continued to increase – from 75 last Monday to over 170 yesterday. The normal range is around 11. There are two possible explanations, one is that the rituximab has caused a brief spike in the count (as the ibrutinib did initially. The other less palatable reason is that the combination isn’t working and the lymphoma is progressing. The is unfortunately no way to tell without waiting, but that really isn’t an option with a count that high, so the plan is to give a short course of conventional chemo followed by another maintenance drug that I haven’t had before.

So I left the hospital in a very mixed emotional state – not in a good place. I did go out that evening, which helped, but I slept very badly with all sorts of dark thoughts going round my brain in the small hours.

However, things always seem better in the morning and I started to think tings through more logically. I think emotionally I waa feat=ring the worst, but logically, while things could be better, this is not a terminal diagnosis. The prognosis might not be the best, but there is an active treatment plan in place.

The earlier today I had a call from the nurse specialists to say that I would be having my first session tomorrow. The drug is vinblastine – a gentler form of vincristine – which I have had before. The side effects are supposed to be minimal so I shouldn’t feel too unwell. It is a group of drugs called the vinc alkaloids, originally synthesised from the Madagascan Periwinkle!

So while I might be down, I’m not out. Onwards and upwards doesn’t seem to quite fit the mood – but certainly onwards, and I hope upwards.

I must record my thanks to various friends who helped me through this rather dark time. You know who you are!

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