It's very nearly six months since I started on Rucaparib. In that time, the drug has been licensed for use in the US and now has a trade name, Rubraca. There's gradually more information around and it seems like my experience of three to four months of hideous fatigue, mild nausea and a disgusting taste in my mouth is pretty normal.
I'm now at the stage that I can tell women coming along behind me to stick with it - the fatigue will pass. What a difference six months makes.
That's because the crushing fatigue has now lifted significantly. It gradually began to fade a few weeks back and has really shifted in the last week since I started on a magnesium supplement. Coincidence? I don't know. All I know is that I do not need a nap every single day (I don't mean "quite fancy a nap" or "could do with a nap". I mean "need". As in "I may become mad or ill unless I lie down NOW"). I have the concrete welly feeling less and less often. I am walking further and swimming faster and able to work a couple of hours a day.
I have developed one unfortunate new side effect: super sensitivity to the sun. If I go out without sun protection, I get burned. Not just normal burning but painful - like I have had boiling water poured on me. I find I need factor 50 to be effective and I need to be very thorough with the coverage. A burnt parting is not fun....Having read the US experiences, it seems that this too is normal. Greece will be fun this summer.
I now feel nearly normal. It's so good to be out of the shadow of fear for a while. I know it won't last forever but I have come across two women in the US who've been on Rucaparib for 2.5 years and 1.5 years so I am feeling optimistic. The latest research presented at the (Society for Gynaecologic Oncology) SGO meeting in March also seemed to indicate that starting on PARP inhibitors straight after first recurrence was more effective than starting later. So I am feeling even more optimistic.
Onwards and upwards!
