I will be starting chemo (4x FEC + 18 x Herceptin) in April and would really enjoy some company on this journey.
My diagnosis : Stage T1c, Grade 2, Node 0, Er+, HER2+
After WLE and SNB I feel really well and look great. So it’s a wierd feeling knowing that in just a few weeks I am going to be sans hair and feeling ukky.
Feel sure that sharing this journey will make it easier, so any Easter chemo bunnies, please hop in and join me.
Am bumping up my own thread - moderators can you please add 2012 to my topic heading?
Really would like some ladies to join me on my FEC journey… I start mid april 2012
I have edited the title of you posted and 2012 as you requested.
Best wishes Sam, BCC Facilitator
I know that you’ve having chemo was a difficult decision for you to make. I’m just jumping in to say good luck to you and to any others starting chemo in April.
A year ago, having had an mx and immediate recon, I was facing an April chemo (FEC-T) start too - feeling very apprehensive and not at all sure how I was going to cope.
I reality I coped just fine. I was one of the many (that you don’t hear much about) who’s SEs were minimal. Yes, I felt very strange for a couple of days after each chemo, I had the tireness and the yukky taste in my mouth, but I managed to work for some of the time all the way through. I used the cold cap which, while not completely successful, gave me an extra month or six weeks when I didn’t have to wear a hat or a wig.
I went on to have rads, so active treatment didn’t finish until mid September, but I was back at work full time by the end of November - shattered at first and wondering if I would ever have any energy again. But hang on in there - chemo passes and it does get better. One year on, I’m enjoying life to the full and got some nice hols planned for this year. Life will never be exactly as it was before and I’ll always have reminders of 2011, but it’s not been as bad as my imaginings.
Take a look at the ‘top tips to get through chemo’ thread, take heed of all the advice you will be given by your team and most of all, listen to your bodies. Any bad SE’s - don’t suffer - get help!
Good luck, I’m happy to answer any questions to the best of my ability, and I hope you won’t mind if I drop in now and then to see how you’re getting on and with any advice.
Bless you DJ
What a wonderful inspirational post - thank you.
Now I know what is happening, I feel pretty calm about it.
Because I will also be having 12 months of herceptin after the chemo, I am going to ask for a portacath putting in - this scare me as I am not good with anything to do with veins as am very squeamish. However, having the one procedure sounds a lot better than 22 cannulas and collapsed veins!
Lovely to hear that your SEs were minimal.
Oncologist knows I wasn’t keen on chemo (who is?) and said i coud just have 4 cycles not 6 as the important thing is to get me to the herceptin. I am now wondering if he is going to divide 6 doses into 4 and although my cycles are shorter overall, I am going to get stronger doses!!Goodness, I wish I could shut the committee in my head up:)
I think you’ll just get a ‘normal’ dose for your four sessions. They calculate what you get based on your weight and height and tend to give what experience has found that most people will tolerate. Indeed, if you have any pre-existing conditions, are much older, or have any really bad reactions, they will give 75 or 80% of the normal dose.
I’ve seen a few people talking about chemo starting soon, so hopefully you’ll get some company soon.
I’m jumping in here to wish you all the best with chemo and to say I hope you don’t suffer with bad S/E’s - most people don’t, it’s only people who do suffer who tend to post on threads as they need support and to know they aren’t the only ones. That said, many ladies like to join threads such as you’ve started, initially to compare notes and not feel alone, but these threads turn into friendly, supportive and often humorous threads. Once other ladies join you you’ll all feel less lonely and gain comfort from each other.
I had my last chemo 12th Jan, had WLE 26th Feb and will be starting rads in April, chemo is now a distant memory, my energy levels are improving weekly, today I managed a five mile walk - this would have been impossible even two weeks ago. So take comfort that you will be OK, I’m amazed what a difference two months has made and didn’t believe I’d be feeling this energetic so soon.
Are you going to try the cold cap? I didn’t, so lost all my hair which wasn’t as traumatic as I’d envisaged - and I WAS hair obsessed.
The fear of the unknown isn’t pleasant, but I’m sure once you start treatment you’ll realise it’s not so bad as you thought.
I’ll keep checking in to see how you are and offer my support.
Hello to all the courageous ladies out there
I’ve been a member since I was diagnosed but haven’t posted until now because I’m usually quite strong minded (a control freak if Im perfectly honest) but was having real problems coming to terms with it and didn’t want to sound like a complete winger…go figure!!
Hi pesteringpixie, not sure but think I might well be joining you on your chemo journey in April.
I was diagnosed on Friday March 2nd, went in to a complete meltdown and spent what I call my ‘lost weekend’ frozen in a chair, planning my funeral.
Fortunately I have medical insurance so it speeded things up a bit, I saw the surgeon on 7th and had the lumpectomy on the 13th. I must admit I don’t know all the technical info like you ladies but apparently in was 19mm, grade 3 but thankfully the lymph biopsy came back clear.
I have got to have chemo and radio therapy so am now waiting for an appointment with the oncologist to get things started, which looks to be some time in April. I have been panicking like mad about side effects especially the nausea as I have a sickness phobia, the hair loss (I’ve checked out every wig, scarf and eyelash website from here to kingdom come, fortunately I lost my eyebrows to over plucking years ago so I had semi-permanent ones done last year…one less thing to worry about). Think I’ve got a handle on it for the time being, my way of coping is to clean, needless to say the house hasn’t been this sanitary in years!!! not sure how long it will last but am having to learn to take one day at a time, not easy when you know what’s in front of you though.
Anyway pesteringpixie if you need a chemo buddy I’m up for it if you are.
Also just wanted to say a massive thank you to all you experienced ladies out there who take the time to support us newbies, its so important to see that there’s life with and after cancer :o)
sorry if I’ve waffled on but it’s so good to be able to talk to people who actually understand and are not scared of the ‘C’ word xxxxx
Don’t panic about sickness - they aim to reduce SE’s as much as possible. I wasn’t sick once - felt sick for a few days on a couple of cycles, but never actually sick.
When you see your onc, explain about your phobia and push to have an anti-sickness drug called Emend (acrepitant). It’s one of the best and acts on the bit of the brain to stop you from feeling sick. It’s not always given as a matter of course on the NHS, but with private cover you shouldn’t have a problem.
Hi pesteringpixie, dstace and everyone else. I’m in your club! I have my first dose coming up on April 11th - 6 blasts of FEC-T. I discovered my pea-size lump just a few days b4 Christmas and to cut a long story short I had WLE to remove a grade 2, 1cm tumour plus lymph node sampling on Feb 13th (my biopsy was Friday Jan 13th - was that telling me something?) Unfortunately there were cancer cells in one of the 4 nodes so onwards to chemo.
I’ve been reading posts on this forum for a few weeks and reckon there are some really helpful and lovely people who are members and it’s a good place to be. I won’t be visiting now till after Easter cos we are off on holiday for a week or so - luckily the timing has worked out and we didn’t have to cancel - but look out for me when I’m back. We’ll all be needing all the support we can get I’m sure.
So good luck to everyone going though this vile journey. We’re in it together. And thanks to the lovely ladies who have already posted supportive messages in this April thread. It’s good to read some positive messages from people who have been through it and come out the other end.
Hi everyone, I too am starting chemo in April (the end of April so I can go away for 2 weeks before it starts). I had a Radical mx and 40 lymph nodes removed, the results said I was a grade 3 invasive ductal and the CT scan I had last week confirms it hasn’t spread anywhere else (thank you God)!! I don’t know all the terms that you use so bear with me please!
I have to have 6 doses of chemo (3 FEC-T and 3 of the other sort ?? will have to check all the paperwork I have). The Herceptin will start during the second round of chemo apparently and then I also have to have Radiotherapy. It looks like a year of treatment hence the reason we want to go away now as no chance later.
I was told I would have the tube in my vein by the doctor but when I went to see the Oncology unit last week they said they would just use the veins in my hands as they are very good. I was a little worried about the Pip (as they call it) as you need to go back every week to have it cleaned etc., and would have to be very careful.
I go for an Echo of my heart on Wednesday this week in Cardiology and possible another draining before my holiday!!! That will be 14 times since the op 7 weeks ago!
Anyway good luck to everyone else starting chemo in April and I will check in on here every so often to see how you are all doing.
I’m going to start chemo on 5th April. I’ve had two surgeries in Jan and Feb to remove the tumor and i had a sentinal LN biopsy which was clear. I was wandering if anyone has had E-CMF chemo.
In this schedule I’ll initially have 4 x E every 3 weeks that should be 3 months than for the following 4 months I have the C part on day 1 and MF day 7. So hoping to be done by November.
I’m told they will sandwich radiotherapy in between. I have 3 children my youngest son is 5. I try to put a brave and determined face on but really don’t know what to expect and feel so lost with it all. I have really long hair and just hope losing my hair is the worst bit. I can deal with that it’s not being able to look after my baby when he’s ill that is upsetting me loads. Does anyone have any advice re looking after children whilst on chemo?
Hi DJ700, Margietee, CarolR & Repunzal
Thanks so much for the advice DJ700, I will definitely be asking for Emend, the sickness was one of my main fears so to know that it can be controlled is a big relief, just goes to prove how important these forums are.
Found out today that I can go for a cold cap to try prevent hair loss, not sure how effective it is but can’t hurt to give it a go, apparently it’s quite uncomfortable…great, just what you need while going through chemo !!
Margietee, CarolR & Repunzal, looks like we’ll all be starting our journey together, definitely makes it easier to know you won’t be going through this alone and that we can support each other through the ups and downs to come.
I don’t know if it’s just me but I can’t believe how many of us there are out there, since I was diagnosed, everyone I talk to seems to have had BC or knows someone who has??
I must admit I’m a bit worried about the whole immune system thing, I suppose I’ll get more info when I see the oncologist but am not sure what I should be looking for, my doctor said I should be careful around colds etc and should avoid things like cat scratches, but my daughter and I run a boarding cattery and I own 3 cats myself (or they own me should I say) so could be a bit of a problem.
Sorry to hear you’re feeling so lost Repunzal, going through chemo is hard enough, but to have young children must be a real worry. They do some really good publications on this site but don’t seem to have much on that subject.
I had a look on the Internet to see if I could find any info but not much joy there either, but I’m sure there’s others on here that have experienced the same thing and hopefully can give you encouragement. I’m sure I can speak for the other ladies on here and say that we are all here if you need to to let off steam or just need a cyber shoulder to cry on, so keep your chin up, the treatment you are having is going to make sure you are around for your babies for a long time to come.
Take care all xxxx
Hi dstace. Have you had your pre-chemo interview yet? Don’t know if all hospitals do this, but mine does. It was a group briefing for 7 of us going through chemo of all sorts, then individual briefing with the chemo nurse specific to me and FEC-T. It went through everything to look out for. I’m sure you’ll have the same, but if not I’m happy to share the info I’ve been given. I can’t do it right now cos we’re waiting for the taxi to whisk us off on our brief pre-chemo holiday, but when I’m back just before Easter I’ll check in and see if you’ve replied to this and whether or not you have had the full briefing from your hospital. Good luck everyone. margieteexx
Hi again Repunzal, just noticed a recent thread on here about Chemo with newborns, I know your little ones are not newborn but just thought you may be able to get some info and support from the ladies on the forum.
Have put the link below so you can copy and paste it into your browser and it takes you to the beginning of the forum.
Really hope it helps. xxx
Thank you dstace it does help to know that people with children have got through this and to read the stregnth and courage that comes across in all the posts. It really really makes a difference so today I made a decision I am detetmined not to just fight this but to beat it.
So instead of sitting around moping and feeling sorry for myself, why me? what did I do wrong? No longer I’m pulling myself together, I’m not letting cancer run my life, my life goes on…
So Day 1
Firstly I brought a big calendar on which I’m gonna be crossing out the days until the end. This Christmas was spoiled for my family by the diagnosis but next Christmas I’m planning to have a best time with my family ever.
I also went to the dentist today and the dentist confirmed I have an infection in one of my back teeth. Now on antibiotics and my Dentist feels I should have the tooth removed he was worried that the infection might come back whilst on chemo and they wouldnt be able to do anything to my tooth at this time.
I admit as he was telling me I felt so despondant I havent even started the chemo bit and already losing bits of me. But you know what it doesnt matter its a tooth and hey I’ll get over it.
He’s going to remove the tooth next Tuesday, I’m supposed to start chemo next Thursday and wondering if it will be delayed due to having an open wound. If not delayed great sooner started sooner finished. If delayed great I get Easter holidays with my children.
Last week I had a leak in the bathroom which leaked through and damaged the kitchen ceiling below. Today the insurance surveyors came in to assess the damage and said they would need to test for asbestos. I panicked a bit and said should I be staying here with little children and he laughed and said oh you’ll be fine as long as you dont breathe, funny man. But good news I’m getting a brand new kitchen to bake lots of cakes and biscuits because I love baking and thats what I intend to do on days I cant go to work or do anything too taxing.
We’re on a bus at the start of a journey and I dont know what each of us will see and not for a minute do I pretend to myself its going to be easy, I am scared and anxious but you know what I promise myself when I get off that bus at the end I am going to be smiling.
Got my prechemo assessment tomorrow.
Good luck we are all gonna get off that bus. Repunzal xxx
Hello all - just popping in from the Fab February chemo girls to wish you all the very best for your upcoming journeys!
I am on a 4 dose regime of AC - short and sharp and apparently a bit stronger but over and done with a bit quickeer.
Dstace - I also have a huge vomiting phobia but talked it through with the team and although I wasn’t offered Emend I was given Ondansetron via IV before the chemo, steroids also beforehand and then 3 days worth of both steroids and Ondansetron. After that I’m given a supply of other anti-sickness tabs nd can honestly say that although I’ve had a few nausea days I certainly haven’t been sick once - thank god!!
The best advice I can give you is that after your chemo aim for drinking 3 litres of water to help flush it out and at least 2 litres for the next few days - its helps both with the nausea and constipation.
I tried the cold cap but unfortunately it didn’t work for me - my hair started thinning and after dose 2 I bit the bullet and had OH shave it off. Got a couple of a great wigs and scarves etc from Buff Headwear so happy with that.
I wish you all the very best for your treatment and may all your SEs be minimal!
Gosh I feel so excited (now thats a thing isn’t it?) that other ladies are going to be doing the chemo foxtrot with me.
I am still awaiting to hear the date for my first session, just know it will be 3rd week of April. I am having 4 x FEC and then 12 months of herceptin.
At the moment, I feel really well and for the last few days have not been obsessing. I have put myself through hell and back with information over-load on the HER2+ thing. I read Dr Susan Love’s book and picked up that HER2+ likes to recurr in the brain - so you can imagine, every slight twinge of a headache…
Am now not reading anything more that my imagination can play with cos my imagination doesn’t play nicely.
Have made appointment at wig stylist and feel rather excited about that - no more hours with the blow-drying for a few months. I am having 2 wigs. One like my own hair that i shall use when working, and the other is going to be something that i have always wanted. Perhaps a red head, sort of a Rita hayworth affair - LOL?
I also intend to have a carmen miranda turban - with all the bananas and grapes on the top. Chemo might be the medicine for the cancer, but laughter is the medicine of the soul:) I may be scared but refuse to be blooming miserable.
So big welcome to our growing Easter bunny chemo gang and a massive thank you to the ladies who have gone before us and are cheering us all on our way.
Hope the nerves haven’t kicked in too much - the waiting is always the the worst.
Dstace and everyone else - re infections. I avoided supermarkets, etc when they were busy, wore gloves a bit more than usual when gardening and told friends/work colleagues to let me know if they were ill so that I could avoid them. Apart from that I carried on as normal and wasn’t obsessive about anything.
I only found out over half way through my chemo that other people had been given dietry advice (basically a pregnancy diet and avoiding any contamination risks). I’d been happily chomping on runny eggs, soft cheese, prawns, rare meat, etc, etc with no ill effects - so I just carried on. I do have a fairly relaxed attitude to these things though and you must all do what you are comfortable with.
Repunzel - Good on you! It might be an idea to put some of your energy and love of cooking to good use by putting some easy meals in the freezer, ready for the days when you feel a bit rubbish and can’t think what to give the family for tea.
You are right - you are all on a journey, however you may find it more of a roller coaster at times than a bus!
Hugs to all.
Hope everyone’s enjoying the spring weather, strange how things never seem quite so grim when the sun is shining.
OMG Repunzal…that’s the spirit… you go girl, so pleased you’re feeling more positive. The first thing I did (when I got over the initial bombshell that is) was to start a journal, called it “I can-cer-vive” initially it was more of a memo pad but it’s now turned into a dumping ground for all manner of thoughts and feelings, some of which are X rated to say the least!
Good news about the kitchen although I have to say that even on a good day, in full health, I find getting cakes to rise, very taxing, oh well we can’t be good at everything ;o)
Hope the assessment went well, let us know the outcome when you get a chance.
Hi kiwijan, thanks for the info, seems we’ve got more that BC in common. I’ve spent many a long night lying stock still for fear of the dreaded S word and if my other half so much as breaths too deep, he’s banished to the spare room posthaste.
I’ve got my oncologist appointment on Monday so I’ll be sure and discuss the anti sicknes options, I’ll also start stocking up on Evian although I’m one of these people that needs a wee if I so much as look at a glass of water. Think I might get myself a commode in the living room, that way I can go at random :-o
Think I might give the cold cap a try but my hairdresser has put me on to a great wig maker local to me so am seeing him just in case, that way I can get my hair styled and go shopping all at the same time…can’t be bad.
Blimey DJ007 didn’t realise that it was that strict, I’ll certainly make sure to get as much information as I can on Monday. I’ve never been one for roller coasters, always too scared it would make me throw up, but looks like I’m about to get a crash course (the roller coaster not the throwing up…I hope)
Love your profile pick by the way!
Thanks everyone for the posts and look forward to speaking with you all soon
Take care ladies and love to all xxx