Hi everyone
Tomorrow I’m having my second of three FEC, and just saw my district nurse for my pre-chemo bloods, and she’s really scared me.
Despite already having had two lots of FEC my tumor (13cm at the start) hasn’t got any smaller, and if I’m honest I think it’s still getting bigger, albeit at a slower rate. I’ve tollerated my chemo “well” and have just had the usual nausea & fatigue.
My DN, says she’s worried that the tumor isn’t getting smaller, and she’d expected (& hoped) that the chemo would completely floor me as then we know it’s working agressively on the tumor too.
To be honest this has really scared me as my tumor is grade 3, stage 3 with lymph involvement, and I don’t have the time ti be “wasting” taking chemo that’s not effective.
Does anyone have any advice? When should I expect the docs to be checking how the treatment’s going (I’ve not seen a doc since before my first treatment)?
Thanks, Rebecca x
Hi Rebecca … I have never heard the theory that the chemo is working better if it “floors you”. FEC is tolerated well by many patients - that does not mean it is not working. I found FEC quite easy going, especially the early doses. Obviously it would be great to think the tumour was already responding and shrinking, but I can’t believe many patients get such a response after just one dose - your nurse or consultant should be able to give you more realistic expectations than that. My tumour was grade 3, but was removed before chemo, so I can’t tell you how often you should be checked, but if you can clearly detect change at any stage (good or bad) I think it would be reasonable to ask to see the consultant again. There are other chemo regimes they can switch you too, if FEC is not having the desired affect. But don’t give up on it just yet - the “E” drug is powerful, and has a good track record for treating BC. In the meantime count your blessings that you can tolerate it well - this is good, not bad news!
Hi Rebecca
Is DN your district nurse? Is so, no offence to them, but the are not oncology specialists. As for the relevance in the chemo flooring you, what a load of b**sh*t. My son had chem which worked well. He remained very well throughout,with good blood levels and little nausea. It has no bearing on the result. I found the DN who were general paediatric nurses, knew very little about the specific treatments and used to make off the cuff comments like yours. Speak to your BC nurse and ask her.
Cathy
xxx
Rebecca
I meant to add, that as a bit of advice, you are going to get every Tom, Dick and Harry adding their two cents worth about your treatment, these include GP’s nurses, other hospital doctors etc etc, anyone who isn’t well up on your individual case. Whilst these comments are often meant well, they at best can be really confusing and at worst, terrifying. Please decide from now on to take notice of your BC nurse and the BC team only. They know you and your dx well, they are experts and you must learn to trust them, otherwise you will drive yourself mad with all the information others will give you.
Cathy
Thanks for all your lovely comments and support. I will talk to my BC nurse tomorrow at my chemo appointmrnt.
My DN (district nurse) does seem well qualified as she used to be an oncology nurse, but obviously she’s out of touch now, being in the community
Can’t say that I’m not still worried, but I’ll ask all my questions tomorrow, and go from there
Rebecca
Hi Rebecca
have to agree with what everyone else has said, yor DN may have been an oncology nurse, but how long ago, things have really changed.
Having said that I do know where you are coming from, I too was worried that chemo was not doing its job I thought the dose was too low because my levels were ok and also because my hair was growing back after 3rd EC, but I spoke to my onc and he put my mind at rest and assured me I was getting enough
Take care
Linda
x
Hi Rebecca,
I only want to echo what the girls above have said. No disrespect to your District Nurse but if you have any concerns regarding your treatment speak to the oncology team.
I know where you are coming from because I tolerated FEC well. I wasn’t too good after the fourth treatment and by the time I got to number 8 I was glad it was over. I asked my oncology nurses whether I was having a strong enough dose as I was O.K., and they assured me that I was and that the aim isn’t to make you ill. Unfortunately some patients tolerate it better than others, it doesn’t mean it isn’t doing it’s job.
Take care,
Denio x
I agree with the others - whilst your DN may have been an oncology nurse I would be inclined to take the advice of your oncology team. I also tolerated FEC really well, but was completely wiped out by the 4 cycles of Taxotere I had culminating in a week in a hospital isolation room.
Hi Rebecca,
I was on AC chemo at first, I was supposed to have 4 of these followed by 4 Taxotere. The AC stopped working for me after about 2 doses and the tumour was not shrinking, so I was put onto Taxotere earlier than anticipated and that knocked the blighter for six! It started to shrink quite significantly - it was 10cm at diagnosis.
Like Cherub, I did find the first dose of Taxotere really awful, then it didn’t seem too bad I tolorated it very well - and it was obviously still working.
Good luck and take care,
Tracy xxx
Hi Rebecca,
I too want to echo my agreement. I had FEC and wasn’t too bad on it. I can’t comment on its effectiveness in shrinking a tumour as I had surgery first having had a smaller cancer than yours.
Again listen to your BC nurse. Even if the DN treats many BC ladies she may not be up to date in her knowledge.
I don’t think it will be easy not to worry but be assured you are in good hands and on good drugs.
Take care
I think it’s pretty usual to have a scan or review at the halfway point of your chemo, to see how it’s going. That’s the moment where they decide if it’s working well enough and whether to continue or whether to change your regime.
Hope you get reassured tomorrow
Jacquie x
Hi Rebecca,
i’m not on the same treatment as you but so far have had 3 epi and touch wood haven’t been too bad. from previous messages I’ve read I think your also quite young like myself and this might be another reason why you’ve coped well with chemo - (so ladies no disrepect to anyone older).
Also to give you an example i had a health visitor come around when I was initially dx and she started sucking lemons when i told her I had lymp node involvment. both me and my hubby felt like committing sucide by the time she left as it as nothing but negative… As all the other ladies say the DN is not a specialist in this area. Think of a pregnancy not every pregnancy is the same however we all end up with a beautiful bundle at the end of it.
take care
(((Hugs)))
Sukes
Hi Rebecca,
I’d like to agree with Cherub and others, I was fine on 4 EC and then had Taxotere and had aches and pains and felt quite rough.
I understand your worries though cos I got worried because my hair started coming back after 3rd Tax and I thought maybe it was not working!!!, I was told def ok, everyone is different and their tumours respond at a different rate to different chemo, try not to panic speak to your BN and team for reassurance.
( Although your DN prob means well its best to speak to those involved in your case )
Let us know what they say
Take Care
Dawn X