I’m on the Optima trial, it’s randomised so you don’t know your results whether it is low or not. I got chemo but my oncologist said if I haven’t of been on the trial he would recommend chemo anyway as I had lymph nodes involved x
I'm on the trial too. I had 4% benefit from chemo 27mm tumour with clear margins and grade 2 ER and PR 8/8. I was told chemo and have completed 4 x EC and on 4th Paclitaxel. Only 50% of women have their tissue analysed and the other 50% are given chemo with no testing, so chances are I'm that group, but could be the 10-20% of the other tested group who require it. The only way to know that you have been tested is if you're told no chemo:)
When do you get the results?
“Remember to look up at the stars and not down at your feet. Stephen Hawking,
I was told that you have to sign the forms agreeing to take part in the trial before they are allowed to test the tissue (or not). After that it took about 3 weeks (2.5 weeks, but I had to wait for my oncologist to be in clinic for the results) and then chemo started the next week.
I was given a plan of 4 x EC every three weeks followed by 4 x Paclitaxel every two weeks. I asked for weekly Paclitaxel ad is less likely to cause peripheral neuropathy and she agreed. The EC (or original version some are still given of FEC) is considered widely as the worst chemo, as the is a lot of nausea with it which requires high doses of steroids and anti- emetic drugs. I generally felt ok ther first couple of days, sick for about a week, then recovered until the just one. It also gave me chest pain and palpitations in the first half of the cycle, but that could be partly due to the steroids as well. Only one of the cold cap machines at or hospital works properly so I lost a lot of hair on cycle 1, hardly any cycles 2 &3, and a lot cycle 4 due to the machine. If you cold cap there should be ice form on the top of the head.
My first Paclitaxel affected me badly with jelly legs which gave way twice, my face was beetroot on day 2 from an allergic reaction (you have IV antihistamines before it's given and steroid tablets), blurry eyes, headache, and a cough, so delayed the second one a week to decide if I wanted it again. My second one was much better, and even on my fourth I get a red face and a bit of blurry vision, but generally those effects didn't return. Good time I have slight tingling though in my arms and legs, but my feet are fine so far as I wore little cool pack booties! I'll do it until 5 then chat to my consultant as ther EC was apparently the one she considers most important.
I'm glad I did it because although it isn't easy, I've been off work now since April and on half pay since last month, breast cancer could come back as a secondary, and it should reduce the chance of it killing me (statistically anyway) from 1/12 to 1/17 over 10 years. I'd no LVI, so I'd say that it's more le 1/20, but someone has to be that 1...
“Remember to look up at the stars and not down at your feet. Stephen Hawking,
Either way i know its not going ti be an eady ride!
Stay strong (fed of hearing that quote) probably because my journey has only just begun. And i am supporting my sister in law who is currently 3 treatments in and going through the mill.
