Hello purple,

yes, I'd be wondering too....I don't suppose the bc nurse can give you all the why's and wheres which makes it all the more frustrating....how often are you having chemo? 3 weekly? Xxxx

Hi Marlyn

How is your treatment going?i remember us chatting on here, just before you were starting chemo. 

Yes, its 3 weekly. I’ve had 3 FEC-T. My BCN said the next three would be changed, just couldn’t say why etc 

xxx

Yes, I remember you....had 2 cycles..next one a week Thursday....it's knocking me about a bit but I'm getting through it..

its a shame you can't ring your onco to chat about it, or would your doctor have received a letter from them? And possibly he could talk you through it? Xxxx

knocked about too, but it’s doable. I hope your third one is kinder. 

Think, I will speak to my oncology nurse, get answers. I just feel like I’m being a nuisance to them xxx

Hi there,

It's hard not to worry about it but do try.  My specific drugs have changed last minute a few times now, but it's always turned out to be another drug in the same family.

Given you are HER2+ve I can't see them dropping the Perjeta or Herceptin, so it may be that they are going to do something other than Docetaxel.  It doesn't necessarily relate in any way to your response so-far either, rather it could be that a recent study has come out suggesting that with your specific type of cancer another drug is proving more beneficial.  There are small studies coming out all the time and if one has been applicable to your specific type of cancer then it would make sense if they pay some attention to it.

If it helps any FEC did nothing for me, it was the T part (can't remember what drug they went for in the end but I was still essentially having FEC and then a steroid) that shrunk my tumour a bit.

I imagine you've maybe turned out to be a little like me, in that my oncologist says "80% of the time patients come and go through your doors and the treatment is all very standard, then you come along and we have to really use our brains."  Those 20% of us are where they do ask other oncologists for their professional experience of different drugs etc. and that sometimes leads them to make last minute changes.  It is daunting for us that it's not an exact science, but having a doctor who is on their feet and so it able to make last minute changes means they are properly considering your case.  That's how I look at it anyway.

Hope that helps a little.

Best of luck.  Do ask when you next see your oncologist why they are making a change.

LJx

Hello twintwo,

been thinking of you....hope everything is going as planned? Xxxx

I'll message you.  Been thinking of you all too but been struggling to be on a screen, feel so bad at not having spoken to everyone in such a long time.

Just wanted to pop in to support any newly diagnosed people, will see how long my eyes last!

Speak soon, LJxx

Hi Twin Two,

Firstly, I am so sorry that I haven’t replied sooner. I just haven’t been online, I haven’t been feeling great at all since my last FEC.

Thank you for sharing your experience and for the words of support. It really means a lot. 

Ive been exhausted since FEC 3, I’ve also got a viral infection and I am on antibiotics. I am due my next chemo this Thursday. I finish the antibiotics today and not feeling much better. The chemo line are suggesting if I don’t feel better by Monday I should go to my GP to have my bloods done.

With reference to my last post it turns out  my BCN had misunderstood the message from my Oncologist. My treatment isn’t changing at all. It will be as originally planned cycle 4,5&6 will be Docetaxel, Herceptin and Perjeta. I am relieved! The BCN thought there was a change, yes, the change being from FEC  to T plus Herceptin and Perjeta which was always the plan. I did not know that BCN do not have access to chemo information. 

At the moment I more concerned with trying to get myself well again from the viral. My temp has been no higher than 37.6 and advice from chemo line is 38 call immediately. I’m due my 4th chemo this Thursday, so we shall see. I am concerned that a deferral will affect shrinkage. I had a one week deferral for chemo 2. 

I hope that everything is going well with your treatment, again thank you for taking the time to answer my original question. 

xxx

Hi purple,

sorry to hear your having a rough time, I had my 3rd fec last thursday and only today feel like I can get out of bed ....this is certainly no walk in the park is it.....I have fumbling fingers too...

good to hear your regime hasn't changed after all, getting you all worried for nothing...silly nurse!

i will be on herceptin too, but hopefully on a trial for 6 months instead of a year ( sorry if I've mentioned this before...chemo brain) 

hope twintwo is ok, haven't heard in a while xxxx

Hi purple 

Ive just had my first cycle of fec, found it realy hard was wonderin if you got any tips thanks x