hello I don’t post on here often but I’m so worried and my oncology team is lovely but can’t understand why I’m scared so here goes my awful journey .
in March I had my faulty PIP implants removed when I was on the operating table a 40mm horrible lump was found and removed it was examined and a grade 3 tumour I then had another operation where they tested the cells around where the tumour was it was all clear and I’m HER2 Negative which was told this is good however very little information on HER2 NEgative all 3 nodes were clear , but because I’m 37 and was a grade 3 I was told chemo and 20 sessions of radiotherapy and 5-10 years of tamoxafillan .
The chemo I’ve had is FEC-T started 19/5/16 the first 3 were the FEC that was all fine and doable even carried on working I had the T part first one 21/7/16 knocked me for six more so the horrid pins and needles in my feet so much that I couldn’t stand or walk for two weeks also had severe peeling of the skin on my hands and feet but found udder cream and avenoo a brilliant help.
Now the oncology have reduced the T bit dosage because of the pins and needles as it could become permanent I begged said I don’t mind as long as I’m alive they said I wouldn’t be put at risk and that when your given chemo your given a bit extra any way so reducing the dose is fine I’m not happy with that I’m now going to be worried sick that it will come back I’ve just had chemo 5 and my last is 01/09/16 I can’t wait but this is niggling in my head anyone else had a dose reduction I’ve even asked for an extra dose of chemo or extra radiotherapy I’m I being silly ?
Hi Dotty79
My chemo regime is 4 cycles of TC, Taxotere & Cyclophosphamide. I had my dose reduced after chemo number one to 85% due to side effects. My Onc’s words were “it sounds like we were overtreating you”. The dose is decided by your height and weight I think but it’s a bit of a “guestimate” and I’m pretty sure they “round up”. It’s common for people to have their chemo reduced. Please don’t take the following as factual but I too was also a little worried particularly as they are talking about reducing it again so I did a quick bit of “googling” last night and from what I could gleam, 85% of your dose will not affect the effectiveness of your treatment. Again, I’m no doctor, this is just some info I read on the internet but obviously some research has been done on it.
Good luck with the rest of your treatment.
H.x
Dotty I had my paclitaxel reduced too. My onc, who was previously in the research side, said there is no material impact on the effectiveness of your treatment, which kind of begs the question why the standard dose isn’t smaller in the first place, but I didn’t go there. Another example: when I had FEC I had a terrible reaction, with about 50 mouth ulcers from behind my teeth to the back of my throat. When I told her, she said ‘let’s remove the Fluorouracil for your next dose, it’s a very old drug & the latest research has shown it doesn’t add much benefit & has bad long term side effects’. I said, why do you keep giving it then & she replied NICE guidelines are behind the latest research. So there you go, the treatment is just standardised, doesn’t suit everyone’s body & there are many different doses/drug combinations that could be equally effective. Worrying is likely to be worse for you than the dose reduction. xx
Hi Dotty79
Just had my pre chemo chat as due first T on Friday - she said if you have pins and needles they reduce dose as do not want you to have long term effects and not be able to buttons in our 80’s!
She said If i had any probs, could reduce the dose by 20% and again by 20% (for number 6) which would mean I’d had 94% T treatment, and as long as you have 85% and above for T treatment that is effective. They give the top whack to see how you go, but are able to reduce dose and still be effective.
Try not to worry, as they have your best long term interests at heart - and what my chemo nurse tells me, which is a great uplift to me, is the stats that they go by are from the 90’s etc, as research is always retrospective and therefore todays outcomes are so much more positive and better, but the stats won’t show that for another 20 years as they collate the information.
Rosie
x
Hi Dottie,
I’m also FEC-T. Had my last T yesterday. Hurray!
I had a dose reduction of T and during FEC was so badly affected I changed my 3 weekly cycles to 4 weekly.
Even with these changes I’ve had a great result. On examination a couple of weeks ago the lump had shrunk so much they couldn’t find it on the ultrasound. Had to have another mammogram. It was small and in their words “breaking up”
HER2 positive and started Herceptin as well. However, it was the 3 FEC’s that really got things going and the lump shrunk noticably on these.
Also grade 3 tumour. Was 33mm.
We can’t say what your result will be but given that I had a longer cycle and a dose reduction just wanted to share my good news with you.