I had my first cycle of FEC 4 weeks ago but as my side effects were so bad my cycle last week was postponed while I had some heart monitoring tests.
I had cycle 2 yesterday and the consultant has changed my treatment to just EC. He explained that there is no evidence to show that EC is less effective than FEC and that some hospitals use one and some the other. But I can't help but wonder why they would add the 'F' if it didn't improve treatment.
It's too early to know whether I'll feel better this cycle but with the FEC I was down and out for 9-10 days with two A&E visits.
Look forward to hearing from any fellow EC-ers!
How are you feeling Caroline? Hope you're recovering from your last cycle. Haven't had my head out in the sun for a while and it was way too cold today!
Lots of cake today, it's hubby's birthday so we had a cream tea this afternoon and chocolate profiterole gateau this evening!
Will have to research acupuncturists in our area, don't like the idea of months of hot flushes so will try anything!
And yes, I'm on the reserve list for LGFB for May and booked on for June if I don't get to go in May.
Love to all xx
Sounds like youve had such a worrying time and Im glad your getting the care and attention you deserve Carmen even though it is frustrating.
Acupuncture helped with the hot flushes for me in the past whilst on radiotherapy but it did take a few sessions before I noticed the difference. Hopalong I didnt realise you had just had the one.
Carmen its a shame you had to cancel the Looking Good thingy but I hope you have re arranged it.
Hope its nice and sunny where you are. It's cloudy here but hoping for some sun this afternoon will be exposing my head for a while to encourage re growth. May have cake too ......
Lots of Love
Oh my, I can't believe your tachycardia was just dismissed, Hopalong, and Caroline, that they never checked your heart when you were having palpitations etc. You should definitely tell them about this at your next appointment.
My saga started after cycle 1 FEC, day 8 I went to the GP who was very concerned about a low bp and rapid heart rate, approx 120bpm resting pulse rate. She tried to phone cancer triage but couldn't get through. I rang them the next morning and they asked what GP was going to do about it! 2 hours later hubby rang again and they told me to go to A&E, again rapid resting pulse. They did ECG which was normal and bloods. While waiting for blood results, I had very rapid heart rate of about 150bpm, repeat ECG normal. They wrote to GP advising they request 24hr heart trace for me and rang cancer triage and told them results of my visit. But when I went for cycle 2 the nurses, registrars etc didn't know anything about this, the triage people hadn't passed on any of the information. But at least they're taking it seriously now, annoying though it may be!
I was due to go on the look good feel better workshop next Tuesday but have had to give up my place as I'm sure I won't feel up to it the day after chemo! Oddly, my neighbour (the one with lymphoma) was on the reserve list and has just been given a place, maybe mine!
Had a lovely day today, beautiful sunshine again! The benefits of being postponed 🙂
I've wondered about acupuncture for future menopausal symptoms, you'll have to let us know if you get any benefit from it. Started with night sweats last night, don't know if it's related to the herceptin or the early menopause I've been promised!
Carmen .. I know you just want to get on with your treatment but it does sound like your team have your best interests at heart and as Hopalong says it is better to be safe and be absolutely sure the chemo not doing more harm then good.
Enjoy the extra bonus week....
My team never once checked my heart even through Ive had palpitations and have felt breathless.
Seeing Onc next week will have to ask if I need checking out.
Hopalong, how you feeling after the acupuncture?
Thank you for your good wishes, we had a lovely day. The original plan was to go to Bodnant Gardens in North Wales for afternoon tea (obviously I mean lots of cake!) and a meal out later but woke up to wind and rain so after a rethink went into Chester, lovely meal out, bought extravagant chocolates in Hotel Chocolat, went in Lush to browse for post chemo goodies (oldest boy had to wait outside because the smell made him feel sick - must take after me!), and bought a pretty flowery dress, and even better it was a size 10!!! I am not a size 10, but love it when the size is generous enough for me to pretend 🙂 And Krispy Kreme doughnuts when we got home yum!
Laughing at your banned list... takeaways!!! After last chemo hubby and I had a massive Chinese, prawn toast, chicken satay and noodles... it was great!
Glad your hair is definitely coming back, Hopalong, do you think the lush shampoo bar is helping? I resisted buying one yet but I'm definitely going post chemo for that and other stuff. Well done on picking the winner and hope it is truly a good omen.
Well done on no anti sickness meds today, Caroline, you will still feel tired at day 8... a few more days and you'll start to pick up a bit and hopefully get back to normal-ish before too long. I really feel for you both with the dietary problems chemo has given you and I really hope these can be fixed soon. I'm sure the nutritionist will give you lots of helpful pointers to get you back into a better diet. I have been lucky in that I've managed to keep eating relatively normally, it's just a few foods I've not been able to stand the taste or smell of, but only half way through and its got worse each cycle so far, so not certain that this will last!
Anyway, number 4 on Monday... deep breath... I'm ready for it 😉
Take care all xx
Happy Anniversary Carmen, hope your doing something nice,
Thanks for your comments, i ended chemo the same weight as I started. My banned food list was basicly a pregnancy diet, no takeaways, fizzy water rather than still if bottled. The only thing I didn't bother with was having cooled boiled water and "risked" it out of the tap lol.
Took a photo of my head today and I do believe there is more hair than baldness for the first time in a while, still early days at 8 weeks and still loosing, so only washing weekly still. I used my Roots sample today made my scalp burn slightly so maybe the assistant that wouldn't give me the sample was right and its too soon. Will save it for another few weeks.
Have you not been on omeprazole or similar for your reflux ?
Just watched the Grand National and picked the winner, didn't have a bet on and chose it for the name Many Clouds. I felt it summned my last few months up. I am now going to see the win as a good omen and take the many clouds win, to signify my corner turning and the sun shining down on me giving me strength.
Take care all x
Hi Hopalong - I think my stomach has shrunk too as I can't eat as much as normal - so Inow just leave what I can't eat if I have put too much on plate. Have lost about 12lb since December although some times by week 3 I have put it down to also losing appetite about day 6 for a few days.
I wake easily but have an MP3 player with a sleep timer and I listen to an audiobook if I need to sleep although don't hear all of story - big gaps where fell asleep. lol Could not have managed without it. Marli x
Hi eveyone, Just thought I'd check in, Hope those having chemo have turned the corner and managing some time to enjoy this weather.
Chemo Brain can't remember if I said I was having Christmas Dinner take 2 this week, well I did just that. Full of all those yummy things that were on my banned food list. Was anyone else given such a list?
Lunch was lovely and tasty and I really enjoyed it, and thankfully my cold had disappeared but then spent 4 hours feeling and being sick x3. 😞 This is something that happens every couple of weeks if I eat too much, and it never happened pre chemo. Its almost like I've had a gastric band. My stomach must have shrunk over the last 6 months due to the small amounts I was eating while feeling nauseous from each cycle. I used to lose 2-3kg every week1 and only just managed to put it back on in week 2/3 because I used to eat high calorie food crap (cream cake, chips crisps, sweets).
I must admit, it does scare me and make me slightly worried to eat as I dont know when this is going to happen. Forgot to mention it to my Oncologist but will if it continues, and will certainly be letting my GP know next week. Anyone else had the same/similar problem?
Have a good weekend xC
Must be the day for gardening or garden centre-ing anyway! I did a bit of weeding this morning while hubby washed his car, told him he'd have to finish my weeding properly another time as I didn't have enough energy! Then he pumped up all the bike tyres just in case I felt good enough for a bike ride at some time...
It's been really foggy here in the morning but the afternoon was glorious, hubby and the boys played rugby at the park while I had my PICC redressed, then we went for a walk and had an ice cream 🙂
Glad you're feeling better Hopalong and Caroline enjoy as much sleep as you need xx
Glad you enjoying the Easter weekend and glad you starting to feel better Hopalong.
What a difference the sunshine makes. Its beautiful here.
Hubby and boys (first time ever!) busy weeding/pruning/sweeping and sorting out the garden yesterday whilst I sat under the parasol supervising lol, desperately forcing my eyes open but then back indoors as SE really kicked in and slept 12 hours solid.
It's only day 4 so Ive a way to go before feeling better but the Sunshine does help and I know it IS the last time... (please god).
Carmen, it's shocking how many are effected by this awful disease. I so wish someone could find a reason why/cure etc..........Im sure the powers that be must be close.
Anyway, continue to enjoy the sunshine and of course recovery cakes whenever possible.
Think I may need more sleep......
Lots of Love xxx
Carmen and Waiting hope your side effects are easing and you have managed to enjoy a little bank holiday sunshine. That goes for all the other ladies who read our EC ramblings but don't post.
My cold seems to be easing I was able to breath through my nose for the first time since Thursday so looking hopeful for christmas dinner x2 later this week.
A lovely warm day here (It's certainly triggering my hot flushes) so as my energy levels couldn't cope with getting into the garden, I did the next best thing and went to the garden centre. The burst of fresh air was made even better by the addition of a Rasberry & White chocolate scone 🙂
Take care all
I feel for you, horrible se here again 😞
As ever I hope they pass quickly and aren't too bad. Try to focus on the fact that this is the last time, really hope you're feeling great again soon xx
And oh my shaving already! Although I have noticed my 13yo is getting a downy top lip so maybe he'll have to shave before too long!
Bumped into a neighbour on our walk in the beautiful sunshine, his wife has non-Hodgkin lymphoma and has recently started chemo, every 2 weeks for 6 months. Just horrible...
I'm ready to make the most of the next week and have the best time with my kids and hubby 🙂
Take care all xx
Back from my shopping trip, didn't manage any biotene products but have some saliva pastilles, and some dry mouth mouth wash will give them a try over bank holiday. The pastilles seem quite good and have a lasting effect,
I would have much prefered clothes shopping, and I do hope you treated yourself Carmen aswell as your son.
Morning, the lack of taste is due to my terrible head cold. It was so bad last night I couldn't swollow or breath properly, also had a slight temp for me but not anything that the Drs would care about.
I'm off shopping today to see what I can do for my dry mouth which is not improving. My oncologist prescribed biotene gel which I've been using and has a small effect and use before meals and bed, but need something else too. It is really getting me down and don't know how I will manage at work if it doesn't improve. I can only manage 1 sentence and then my lips stick to my teeth and my voice goes hoarse. I never go anywhere without a drink and a packet of sugar free boiled sweets.
I've been told of biotene mouthwash and toothpaste to add to the gel. I also asked the pharmacist yesterday for some artificial saliva but it was going to cost me 10 pounds so will wait untill tuesday when GP opens.
Any other tips gratefully received.
Hope your last side effects settle Caroline, and you can manage am easter egg. xx
My aches and pains are not as bad today thank you for asking. I'm just back from a slow hobble around the supermarket and stocked up for the weekend. My 2nd box of tamoxifen needed collecting also.
I woke this morning with a terrible bunged up nose and a slight rattly chest/dry cough but no temp. I managed to avoid a cold through chemo (no mean feat when over winter) so hoping this doesn't develop further. My taste buds seem to have gone again too (not a happy easter bunny). I need to be better by Wednesday as mum has another christmas dinner planned, full of lots of prawns, and eggs and an expensive bottle of wine.
Caroline you asked me about hair growth. My last chemo was almost 7 weeks ago (BH Monday) I cold capped and managed to keep my thickness at back and sides, completly lost my crown area aprox 5cmx4cm and had about 50% thinning to front and a receeded hairline. I am still shedding. I am alittle concerned as a side effect of the Tamoxifen can be hair thinning/loss.
I can feel hair growth but as yet can not see it. My natural colour is scandanavian blonde, but was ginger until 2 years old. My friend at lunch yesterday had a feel and a look and she says it looks almost white, so we shall have to wait and see what colour develops.
I completly lost both eyebrows but kept 50% of my eyelashes. I can again feel my eyebrow hair but it isn't visable. Lady garden, arm pit and leg hair is also still missing in action. Knowing my luck it will arrive with a vengenge just in time for summer.
Have a good weekend everyone and I hope any side effects are manageable over the holiday period xx
Hopalong... hope your feeling better today and your aches have settled (glad you treated yourself to cake). and a the hope bath helped.
Im loving' blue skies and fluffy white clouds' bath melt from Lush. Highly recommend if you like patchouli.
Can I ask how the hair re growth is coming along and how long since your last chemo?
Carmen .... glad your nausea free once again and you had a nice day shopping with your boy.
Hope involved cake my dear....
Ive found the fatigue has got worse with each one sorry to say. Enjoy your well week!
Have a nice Easter everyone.
Lot of Love, Caroline xx
Sorry you're still struggling Hopalong, have a nice rest, maybe a soak in the bath will help your aches.
I've been anti-sickness med free today, I did say Thursday week 2 was my standard day for feeling hugely better! Not 100% nausea free but totally manageable 🙂 Anyway, oldest son was off school for an inset day so we went clothes shopping for him and had a great few hours, then came home and fell asleep on the sofa as was exhausted!
Caroline, hope today went well and you're feeling ok xx
Happy to hear you've had a lovely extra week, it really helps to feel normal for a while.
Thanks for your support, only those who've been through chemo can truly understand. Good luck for tomorrow, the end is in sight! Think that happy thought every day when the se are getting you down.
I'm feeling a tiny bit better today, a tiny bit less tired and a tiny bit less nauseous. We got a lovely fat cheque in the post today so I popped to the bank to pay it in then thought I'd get a celebration cake at the supermarket... Just looking at them made me feel so sick, so instead bought a box of mini brownie bites to have with ice cream... Hubby finishes work tomorrow for two weeks, he's taking unpaid leave so the cheque has come just at the right time. And over Easter hols it's our wedding anniversary (before chemo) and hubby's birthday (after chemo)... looking forward to celebrating both before!
Keep smiling and remember it's nearly all over!!!! 🙂
Hopalong... sorry to hear your having to deal with yet more side effects. I may well have made this up or possibly wishful thinking but Ive read somewhere that on Tax the SE settle down eventually and also, it can help to try a different make of the same drug, but as I say I may have made this up .....
Acupunture (also at Haven) took the edge off the hot flushes for me while on radiotherapy as they became very intense. Hope works for you too.. xx
Carmen ... Sorry your not feeling so good just now..... take it just one day at a time hunny and you will start to pick up in a couple of days.... Just allow yourself to rest and mope around if you need to because it is just horrible... completely justified in my book.
But, remember you are HALF WAY now and your are just amazingly strong to get this far and you can do the rest and it will pass quickly.
My Oncologist told me last week that some folk give up after number 3 or 4 so I think we should all consider ourselves true warrior women.
I feel exactly the same every single cycle..... and at least you will have a good week over Easter with your family.
Sending you a big hug and hope the Easter Bunny brings you a massive Easter Egg and lots of Cake!!
Ive been trying not to let the thought of chemo on Thursday spoil my extra week but as it gets closer I carnt stop thinking about it as I know will be knocked over for two weeks, but for the last time. Hurray. (please god!!).
Our youngest boy finished for Easter last Friday and we have had a lovely week. Its been so nice to feel well and have some family time together. Weve had fun and been out and about lots.
Im thankful for an extra recovery week but still dreading Thursday but hay Im ready.
Take care everyone and lots of love xxx
Hope everyone is ok? been a bit quite lately.
I'm suffereing with joint pain on my new tamoxifen thought I'd got away with it but no its arrived at week 3. Hot flushes have also increased in intensity but not in number. I was having them on chemo and my periods stopped after cycle 3 of EC. Have booked in for accupuncture at the haven to see if that helps.
Have a good school holiday everyone and hope any side effects are manageable. xx
Know what you mean about the wind, one day last cycle was horrendous... I've never felt less ladylike in my life! Kids thought it was hysterical!
Bloating has eased a little but getting full very quickly, makes a change from eating everything in sight.
Got my appointment letter through for cycle 4, they'd booked me in for 20th April instead of 13th... Think they want my chemo to go on forever, rang them straight away to get that changed... I'll be so happy if I can get to the end without any more delays.
Hope your son is ok, enjoy some time with him.
But seriously make the most of your time with fun stuff not ironing!!! 😉
Hope your still feeling ok and the bloated feeling has settled down. Its the drugs effecting the digestive system as that seems to be the bit seems to effect us the most. Ive had shocking wind throughout the treatment especially when I get back to eating normally (haha sorry anything to do with wind just sets me off) and ingestion seems to have got worse from about day 8/9 but this cycle didnt start till day16 and kept me awake till the early hours. Had a lovely evening with friends and some delicious food, as taste buds on their way back, but boy did I know about it!
Agree how se can be different each cycle. Ive had an extra couple each time just to keep me on my toes. Think your GP is quite right about some women having emotional melt down when treatment finishes. Think I had mine last week tho.....well Ive had a few episodes like most of us in here.
Im hoping Haven will help to keep me sane when Im done.
Ive got my youngest at home today with yet another PE injury. Following my appoint with Onc yesterday hubby just set off back to work when I got the call from school. High tackle in rugby resulting in strained neck!
Its lovely having him at home keeps my mind off my worries.
Been out for a walk between showers and caught up with the ironing. Exciting life I have!!
Hope everyone else okay today too. xxx
Oops posted too soon...
Was going to say it's weird that my cycles throw new stuff at me each time. The heart meds are amazing though, I really hadn't realized how often my heart was beating too fast until it stopped doing it!
Anyway, enjoy your extra days and make the most of Easter 🙂 xx
Think the steroids are another anti-sickness defence and possibly (although I may have made this up) stop the body having an adverse/allergic reaction to all the chemo drugs... I take mine at breakfast and lunch to try to stop them from keeping me awake. But I'm having trouble sleeping anyway, have been since this all started.
Caroline, hope the plan from the haven helps you. I haven't actually spoken to anyone except BCNs and GPs, I think right now I'm so in the thick of wading through treatment that I haven't really contemplated the what next. One GP said a lot of people seem to cope ok while actively going through treatment but just crash emotionally once it stops, and I think it's almost harder to get back to what was normal for you before BC than if things can change, like me applying for jobs. I actually had a job offer on the same day as my diagnosis, not the best timing! Anyway, hubby dropped my application in at the hospice when he picked the youngest up from school as the hospice is right next door to his school... very convenient 🙂
I'm glad for you that you've delayed for a week it will do you so much good, I know I resented being delayed but the bonus weeks were so good for me.
I'm doing really well at the moment, post chemo 3, virtually no nausea yet! Worst thing is I'm so bloated, my tummy is like a bowling ball, it's so uncomfortable and makes me not want to eat as it then feels worse! Weird
Carmen just noticed your thread re Emend. I take mine in the morning as soon as I wake up no matter what time Ive had my chemo. x