Hi team ?, sorry I’ve been really quiet for a while, I’ve had some changes and they’ve taken some time to get used to.
So last week I was supposed to have my third EC. Unfortunately, the monitoring scan has shown that my tumour hasn’t responded at all, in fact, its grown to nearly 12cm. Firstly, that strikes me as a pretty bloody big bastard breast cancer (BBBC)! When I was first diagnosed (4.8cm in September) they were talking to me about chemo ‘melting the tumour away’ to nothing then doing a wide excision, so I really don’t know what to expect anymore.
Anyway, rather than bothering with more EC my consultant started Docetaxol straight away, followed by pertuzumab and herceptin 2 days later. Had an adverse drug reaction to the Taxol which was frightening but the nurses were amazing, so calm. After that we continued much more slowly, and fridays session was with 8 hours of observation just in case.
Got to be honest, I’m personally finding this a completely different ball game. I felt hungover with the EC which lasted less than a week, but after a week on the new regime I would say my side effects are much more visceral. Obviously, I’m emotionally knackered, but from my brief experience so far with the new refime i recommend clearing the diary completely for the week (I have slept almost constantly on some days), taking loperamide, and stocking up on bland food. Take paracetamol (or stringer) regularly for the bone aches which for me have become much worse and keep me awake at night (hello 3am). I can’t taste a thing, but my tongue and lips feel as though I’ve burned them and are very sore, red and swollen. Does anyone have any recommendations for this as I’ve not had it before? I wonder if it’s thrush?
Feeling back on my feet today but unsurprisingly, morale has taken an epic hit. Didn’t cry for a day or two then spent the whole weekend in bed sobbing. Gutted to have wasted those 6 weeks on EC. I asked my professor if this meant that there was a higher likelihood of it having spread distally and he simply replied “it means, as I said, the chemotherapy hasn’t been working”. Not sure when we do a repeat body scans, but now have massive scanxiety so too afraid to push for one. I guess it doesn’t really matter anyway, just as well to get the new drugs in and working. I know it’s important to be positive… but I’m absolutely gutted and need to find my feet again.
Anyway, that’s my week. I’m sorry to worry anyone else if I have, I know we all have monitoring coming up, but I hope you don’t mind me sharing with you guys, esp as we start looking towards the next phase of treatment. Keep Going x ??
