I had my fourth FEC last week (31st Jan) and it would be good to compare notes with anyone who’s at the same stage. (I’m having 6xFEC, to be followed by radiotherapy.)
My 2nd and 3rd treatments were both delayed by a low neutrophil count and I’m now having G-CSF injections to keep me on a three-weekly cycle. Although I was pleased to have the fourth treatment on time (the delays had really got me down) I have to admit that I didn’t feel physically or emotionally ready for it. I’d found the third cycle very tough - tired all the time - and I hadn’t even begun to bounce back when it was time to go through the whole thing again.
I felt quite feeble throughout the treatment and I had an overwhelming urge to rip out the cannula and run round the chemo suite screaming. (Fortunately common-sense prevailed!) I’m pretty sure I’m not alone in this. Up to now I think I’ve been pretty stoical about everything and, despite low neutrophils, I haven’t caught any infections so I’ve got away lightly in terms of side-effects. But despite being two-thirds of the way through chemo, it still feels like a very, very long haul and I’m worried that I’ve used up most of my inner resources already.
I know it’s just the drugs that are making me feel so low and that I won’t feel like this forever. I had a long chat with a lovely District Nurse who gave me my injection this morning. She said, “Cry if you feel like crying. You must let it out…” so I’ve taken that advice and had a mega-weepy day.
Another comment which has helped me in a strange way was from a phlebotomist. I’d had an allergic reaction to micropore tape and told her it had never happened before. She said, “Before is irrelevant. You’re having chemotherapy. It changes the chemistry of your body so you can’t expect it to behave normally.” I’m not sure why this was helpful - I knew this already. I suppose it just underlined the fact that we should never underestimate what a profound effect such strong drugs will have on us, nor how closely our emotional wellbeing is linked to our physical state.
When I started chemo I thought the drugs would clear out of my system each time but I’ve realised that there must be a cumulative affect. On bad days I feel I’m being slowly poisoned; on good days I believe it must be worth it and try to make the most of this life-changing experience.
Does any of this resonate for you?
Love and warmest thoughts to everyone on the chemotherapy roller-coaster.
Caroline xx
Hi Caroline
I am having my 4th FEC on Thursday - I have to follow that with 4 taxotere (every three weeks) and then I will have a double mastectomy followed by rads! I agree about it being cumulative - the third one really knocked me down for a while. I am also having so many allergic reactions but I have no idea to what - I go to work and my eyes just water - it is horrible - everyone thinks I am crying and I am not (I have not told anyone at work yet!). I am not looking forward to the 4th and the thought of having to get used to different drugs and not knowing what my reaction will be I find hard. I find I feel so uncomfortable after eating as if my stomach is half the size it used to be. I have to say I had a shower yesterday and saw myself in the mirror and just burst into tears - bald and with the thought of what is going to happen it was just too much.
I wish you well with your treatment
Penn1 xxx
Dear Caroline
You sound so brave i am confined at the moment as my neutrfils are only 0.6so cannot see the grandchildren, had last weekend cancelled which was one of my goals to reach. I am have this rescue remedy from a hypnotherapist that my gp recommended and it is a Bach remedy which i was very sceptical about. But it has been amazing and i feel like a human being again.
When i was first diagnosed i could not stop crying because i thought i had caused so much trouble for the family and i felt i had let them all down.Falling out the loft retrieving the Xmas decorations 15months before, fracturing my spine did add to this guilt, but at the moment i am campaigning for the local cancer ward which is dangerously understaffed and is the only one in the county and also campaigning for all chemo treatments to be carried out at our local hospital, they can do some but not others and it causes so much stress for the very vulnerable and their families.
I just want to get up to mischief
Thinking of you and hope this message has helped it won’t be long before spring comes and all this will be behind you.
Lots of love
Kate xxxxx
Dear Caroline
I’ve just finished my 6th and last FEC, and will be starting radiotherapy in a few weeks.
You’re well over over half way - and while I remember being there just before Christmas - I can honestly say that looking back the last 4 1/2 months have gone by really quickly.
I still have weepy times - I blame the drugs’ effect on my hormones influencing my emotions - but also I’m dog tired as I haven’t been sleeping well for weeks - mainly due to horrendous night sweats.
There definitely is an accumulation - and I too hated the thought of being poisoned. But if it makes me better I’d do anything.
Keep strong - you will get to the last one. I strangely didn’t feel any sense of relief at the end - or any need to celebrate. I just thought ‘right that’s over - onto the next stage’.
You’ll be all done by March - you can do it!
Best wishes
Tracey x
I had my 4th Fec last Wednesday (I’m only having 4, followed by rads, then 4 x taxotere).
I have to say, I am now on day 7, and the fourth has been so much beter than the 3rd (so far - not counting my chickens here).
With every one of them up to No 3 I got infections, which were treated with antibiotics, but with the 3rd - I was just completely knocked for 6. I was extremely tired, extremely depressed - rang by BN in tears at least 3 days running to ask all sorts of stupid questions relating to prognosis. At one point she suggested I needed ‘more help’ as I seemed more depressed/down than would be expected. I also got every side effect imagineable (having had relatively few previously), swinging from diarrhea, constipation, heartburn, ulcers, sore head etc etc. It was so bad I wasn’t going back for the 4th !! (Though it did pass lol)
So far, with No 4, all I have suffered is constipation (my own fault - forgot to take the tablets!) - apart from that I seem to be on a permanent high - I have actually posted on another thread that I was wondering if they’d miscalculated the steroid dose - the high has never lasted this long. I am not sleeping (have had approx 8 hours sleep in the last 4 days), have so much energy it’s unreal - I’ve washed, ironed, cleaned, de-cluttered, baked and even done some real work!
After No 3 I expected and assumed that it was all cumulative and that No 4 would be even worse??? So I don’t know what’s happening.
I must admit - at the moment I just keep thinking - if I’m so high, for so long now - how big is the drop going to be when I come down?
I will post again and let you know if it all goes pear shaped!
Thank you, ladies, for your lovely, thoughtful replies.
Penn1 - You put my situation into perspective. You have so much more to face than I have. I hope it goes as well as it possibly can. I’ll be thinking of you.
Kate - So sorry you can’t see your grandchildren. So much seems to be taken away from us at every stage that it can seem like a punishment, even though we’ve done nothing wrong! Thanks for the tip about Rescue Remedy. I have some but for some reason I haven’t thought of using it! Doh!
Margaret - All power to your permanent high. Hope you manage to come down gradually. Let us know how you get on.
Tracey - It’s great to hear that your chemo has gone quickly and I’m hoping I’ll feel the same fairly soon. Good luck with the radiotherapy. I know it’s mad but I find myself almost looking forward to mine. As you say, it’s the next stage and I’m impatient to get cracking on it. You’re right about the effect on your hormones. I’m 48 and the chemo has catapulted me into menopause. Dreadful night sweats followed by a feeling of being cold to my marrow - and as soon as I get warm again another sweat comes along. Ho hum… I haven’t slept well since chemo started in November and now it’s having an effect on my partner as well. Although I don’t want to be alone, I’m encouraging him to have a weekend away so that he can get some undisturbed sleep.
Thanks again for your posts. After I’d started this thread, I posted on another one started by someone who was just starting FEC. Now that WAS therapeutic. Giving support to someone else gave me distance from my own problems (well, what a surprise). These forums really are a Godsend!
Just thought I’d come back and let you knw the high is continuing!!!
I’m beginning to think that it’s psychosomatic - because it was my last one - I think it’s my attitude that changed - I didn’t take all the antisickness stuff this time, just for the first 3 days - and I haven’t been ‘waiting’ for the side effects. I’m now on day 9 - no infections (they usually appear at day 6/7) - apart from the piles (sorry!) following the constipation - I have had no problems at all.
And I’m still rushing about like a headless chicken - long may it continue !