Just found out am going to have 4 x Epiburicin Cyclophosamide then 4 x Taxotere - all every 21 days
I know I am going to say goodbye to my hair (getting wig tomorrow) but am particularly interested about weight changes. Nurse said I might put weight on but looking at the internet (dodgy I know) there is nothing about weight gain for the Epi… and possible weight loss for the Taxore - so am confused. Not having hormone treatment as receptors 100% negative
Also if anyone could educate me … is Epiburicin Cyclophosamide the same as EPI but what about FEC is that different? presumably different ? sorry to be thick but am living abroad and having trouble understanding and piecing it all together
Feeling like the thickie at the back of the class - don’t really understand any of the acronyms - DX is presumably diagnosed but what is WLE ??? I had a partial masectomy - if anyone could tell me my acronym for that I would be grateful. What is the acronym for clear nodes? and what is vascular all about?
Think I am about to burst into tears and feel like I might finally tell some friends here but not sure whether I am going to get the words out before dissolving into a puddle.
Had to wait 6 weeks for my results (after several appointments where i thought I would know but didn’t) and now everything is happening super-quick and am feeling a bit of a mess … was fine until last week … know I am lucky having the treatment etc but feel like I have been hit by a bus …
sorry about all this - any info gratefully received
good luck everyone
FizBix
Sorry your feeling so low and tearful - not surprised tho - it hits us all at one time or another and with you saying you had to wait 6 weeks for results etc I suppose you always had that little bit of hope.
DX is diagnosis, WLE is wide local excision, no idea about shorterning partial mastectomy tho.
I had x6 epi and cyclophosphamide - you are prepared for the hair loss and that is good - I started losing mine in clumps exactly 14 days after my first dose and by the time it came for 3rd dose on day 21 I shaved my head cos I had a huge bald patch on top by then and was losing it at the sides. As for the weight thing - I lost 1/2 stone and have kept it off - the epi and cyclo gave me a horrible taste in my mouth and no appetite for about 2 weeks - the 3rd week my appetite was back to normal and then it was starting all over again.
You say you are abroad - where are you?
By the way - I was dx in July - had 6 chemos and then full mastectomy for idc - invasive ductal cancer - which was grade 3 and aggressive. I am still waiting to see if I need Rads - radiotherapy.
Dont know about an acronym for nodes but vascular simply means whether the tumour has invaded the blood vessels within the breast - ie vascular involvement or no vascular involvement.
Good luck with your treatment. Right now I am sure you are feeling like there is no light at the end of the tunnel but you WILL get there - with many ups and downs - but you will get there in the end. This forum is great for questions and getting things off your chest so please use it. We are all in the same boat - just different stages etc.
Hi FizBix,
It’s all very confusing isn’t it. You’ll probably feel a lot less stressed once the treatment begins in earnest. There are also a lot of very knowledgeable ladies on here who will be able to answer all ( well most anyway) of your queries regarding terminology. I can tell you that a WLE is a wide local excision, roughly translated it means they take away the lump/s and a margin of surrounding tissue, which they then look at to see if the surrounding tissue contains any cancer cells. If it doesn’t have any cells then you have clear margins. If there are cells present they can have another go and remove more tissue from the area.I think vascular refers to how the cells travel, through veins?? as opposed to via the lymphatic system.
You also appear to be having the EC components from what was formely the FEC regime, From what I have read recently a lot of clinics have stopped the Fluorouricil part~ but don’t know why!! Not much help really am I?
As for that steamrollered feeling… it will pass , eventually. I really hope you start to feel better soon. Margaret
I think you’ve had most of the acronyms explained lol - the EC is Fec without the F lol - I’m currently having Fec x 4 followed by 16 lots of radiotherapy followed by 4 x taxotere followed by a year of herceptin.
With regard to the weight question - I am losing weight on Fec but I think that is as much to do with my diet as the treatment itself - everything but fruit tastes so awful my diet has been transformed into something wonderfully healthy (which it wasn’t before lol !). From reading I have done I was under the impression that weight gain was more likely with taxotere - due to a) the steroids involved with the treatment and b) the lack of activiy due to joint pain - but can’t speak from experience yet lol
re all the feelings you are having - this is usual, don’t be alarmed. It really is a roller coaster ride - but you will see the light at the end of the tunnel eventually - I was the same, in that everything happened at lightening speed - I went to GP on 30 Oct, was referred to breast clinic on 1 Nov, and given diagnosis also on 1st Nov Had bone/liver/lung scans on 8 Nov, Mastectomy on 13th Nov, and then started chemo on 28 November - less than a month after diagnosis !!! It wasn’t really till I started the chemo, and had so much time on my hands that it began to sink in exactly what had happened and how fast it had happened ! But I will never knock the NHS again (and I work for them too !) - I cant fault the treatment I have had, and the speed with which it has all taken place.
Please let us know when you are starting chemo, and how you get on - there is a useful thread in this section called - anyone just starting chemo (I think lol) - lots of women just starting out sharing their experience - feel free to come and join us !!
I had 4 x FEC & 4 x Taxotere, and I found I was continually slightly underweight all during chemo. I am now back to normal (last tax was in September). I think Christmas is something to do with that!
I had 6 x FEC and lost nearly two stone in weight (which I could easily afford!). Mainly through not wanting to eat. Put a stone of it back on over the following year, though.
Gwyn
I had 3 x FEC and 3 x Tax and went from 11 stone to 9 and a half. Brilliant. Haven’t put any back yet. But as Gwyn says it was mainly the vile taste in the mouth which put me right off eating, rather than the chemo itself. Just trying to keep it off now. Must buy some new clothes.
I had 6 x FEC and my weight did not change. My appetite lessened a few days after the chemo but when it returned to normal I ate more, and probably a bit more than pre BC. But I did take regular exercise.
Hi,
I lost weight too gradually through out my 5 chemos. I had 3 FEC and 2 Taxotere. At the start of the chemo I was 57 Kg and on last chemo I was at 50 KG. I lost appetite and nothing taste good.
I have finish chemo now and waiting for surgery on 29th January and although my apetite is coming back, I still have not get my normal sense of tatse back yet. I still cannot have spicy food and most food taste the same. Sigh!
i lost a stone after diagnosis, down to 9 stone now and not really puttng on weight with the chemo even though the second two weeks of the cycle i eat lots of chocolate - i was worried as to why i was’t putting on weight as onc had said i’d be more likely to gain weight inthe long term… but reading this it seems as everyone loses weight like i am. if i ate the kind of things i eat now, normally, i’d be huge but no matter what i eat, i still stay the same 9 stone. do you think it’s the body using energy to get the blood back to normal?? not that i’m complaining … carrie x
Hi, sorry to buck the trend but I’m one who put on weight! I had 4 x EC followed by 4 x paclitaxel (part of the same drug family as taxotere). I put on a little weight on EC, due to inactivity mainly, due to tiredness, and also when it gave me that funny taste in my mouth I found eating ‘bad’ things easier, (chocolate and cakes) and was also drinking a lot of fizzy sugary drinks (don’t like diet drinks) but if you’r off your food you need the calories from somewhere. On the tax, they do give you a big dose of steroids with the treatment, to stop allergic reactions, and that can make you hungry. Also putting Christmas in the middle of my treatment didn’t help!
I had my last tax yesterday (YAYY!!!) so will be giving myself a few weeks recovery and then trying to start improving my diet and doing a bit more exercise. I guess I have about a stone or just over to lose.
Good luck, and as I found out yesterday, you can get through it. I had some down days, a few really dark days, but not so many really, and have had a lot of support at home and here, and have to say on the whole it was all doable. Mostly you just have to take care of number one for a while, do what you can when you feel like it, whatever that is!
Shannon - CONGRATULATIONS on getting through your chemo!! I have three more to go and I would give anything to be in your place right now but it’s great that you’re through it… roll on my next three sessions. hope all goes well for you from now on, carrie x
Like Shannon I put weight on a stone and a half to be exact ! Not good. I blame the steroids but felt to yuk that it is lack of exercise. Not that I was capable of doing any. Finished chemo end of November and started radiotherapy this week and have been told not to diet until this has finished as if you lose weight the markers can move and they could be zapping the wrong parts! Makes sense I suppose but I had got my head around starting to diet and getting rid of this fat. It makes me feel so cumbersome. I wasn’t slim before and had just joined Weight Watchers when I got the diagnosis.
So hopefully in 5 weeks I can start getting rid of this extra weight but thought in the meantime if I could start getting more mobile. I had a reconstruction at the same time as mastectomy using the back muscle and I still find this very uncomfortable. Every time I had chemo it seemed to aggravate it and with the radiotherapy it feels very tight
I think the acronym for partial mastectomy is MRM - modified radical mastectomy, although not sure, as I had WLE and total axillary removal - haven’t come across an acronym for the latter.
I lost 2 stones on FEC, went down to 7 st, but most likely not due to the FEC itself, but eating no solid food as I had to come off my normal weekly chemo, methotrexate, for Crohn’s and I got a flare, being totally faecally incontinent. I even had to wear old people’s incontinence pads, but hey, I got through it, and have put the weight back on now as I am eating normally. The hospital prescribed, and delivered to my home, a huge box of Fortijuice, a mineral/vitamin supplement, 9 flavours, all yucky. Each carton has 300 calories and I had to drink 3 a day. No fun, but looking on the bright side, my 75 yrs husband had to learn how to cook, as we live in an isolated Fort, and no fast food places nearby. He now loves cooking and is quite imaginative. A nice, unexpected bonus for both of us.
Hope your chemo goes well.
Liz (who used to live in Mijas on the Costa del Sol for 8 years). We repatriated because the GP a French Algerian who spoke excellent English) and the gastro in Malaga felt they did not have enough expertise to deal with my Crohn’s. Hubby didn’t want to come back, but I said I was returning regardless, and thankfully he did come with me. We are going back in August with 9 friends to stay in a large villa outside Mijas, owned by English friends, for his 80th birthday. Will be quite a walk down memory lane as friends who still live there tell me it has changed dramatically since 1993.