Starting Epi-CMF 9th October buddies needed

Hi
Could really do with some buddies when I start chemo on 9th Oct!! Have been reading the discussions & picked up a lot of good ideas - where would I be without you all??!! But I’m really scared now - and could do with some support

Hi Carol, me too epi-CMF on 9th

I should have started it on 2nd but they delayed it til 9th (issues with infection)

dont know what use I’ll be but I’ll be your buddie if you want *hug* I’m a little scared too! wanting to get it over with to be honest though

what time on Thurs is your appointment?

Hiya,

I just wanted to wish you both the very best of luck for your first chemo sessions this week. I actually finished E-CMF chemo a year ago this weds but remember my first session like it was yesterday!

I was sooooo nervous when I went for my first chemo. My boyfriend literally had to shove me out the front door and force me into the car! I cried when I saw the syringe filled with red liquid (epi) as I knew it was prob gonna make me feel like sh*t. I even had a sick bucket prepared before I left home, ready for my return! I am pleased to say that actually it was nowhere near as scary as I had imagined it to be. I didn’t start being sick immediately or anything like that! In fact, because my anti-sickness meds were nailed from the start I was never sick whilst on chemo.

The time literally flew by and before I knew it the chemo was finished. I’m not saying it was a breeze, far from in fact, but it was nowhere near as bad as I had imagined it to be. Honestly, if I can do it then anyone can! There were some very low days but these were outnumbered by the good days. I did struggle massively with the whole hair loss issue, that was definately the worst aspect. That said, it did start to grow back as soon as I finished the Epi, and I was going ‘commando’ by the time my final CMF came round.

I shed lots of tears when I was on chemo, but I am a bit of a weeping willow truth be told! I think I just felt sorry for myself sometimes. There was lots of laughter too though.

Check the ‘top tips’ thread I started was back when if you get a chance,

I wish you all the very best,

Take care and be sure to let us know how you get on,

Kelly
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Here is the link to the thread Kelly mentioned

breastcancercare.org.uk/bcc-forum/discussion/12623/1/top-tips-going-through-chemo/

Ann

Hi

Started E-CMF on the 1st August so a little ahead of you both. Had all 4 epirubicin and coped ok with few niggles such as horrible taste in mouth, vein problems and mouth ulcers. All side effects can be minimised. Dont forget if you are on a trial then any medication you need related to chemo is free.

Good luck to you both for the 9th

Annie

Hi

I had my 1st epi two weeks ago and the thought of it was much worse than the actual experience. All the nurses in the unit were fantastic and easily put my mind at rest. I have had my 2nd epi this morning, and feeling fine so far. I am on the TACT2 trial with accelerated epi every two weeks instead of three. The district nurse will come and give me a neulasta injection tomorrow to boost my wbc. As Annie says above I have had a few niggly side effects but nothing too drastic that I couldn’t cope with. I hope you both fare as well as we have. Keep your chins up and keep us posted.

Jackie

Hi there,
just want to add my twopeneth worth!
I agree with everything the above have said . I know it is very scary (and to be honest the fear has got me in a worse state than the drug) but I have just had my last epi and start CMF this Friday, but it can be done!!!
I wasn’t sick, didn’t get ulcers, was just more tired than usual and the rest was jst niggly stufff. Oh yes, the hair going was quite abig deal ,but it is growing back already
So take heart and the best of luck to all new starters
Gillian

Hi
Thanks for your replies - it makes it sound ok-ish!! I’m sure I’ll be asking for advice - thanks v much for the link I’ll have a look. Presume it’s too late for me to get on a trial? Onc didn’t mention it and I didn’t ask - just want it all to be over with as quickly as poss!

I start 8.30am … how did you think of nettiespaghetti name!!! What time are you?

Any teachers out there??

ps if I disappear we are having huge problems with our internet connection at the mo - terrific

Hi Carolj,
I guess I could be your guinea pig in this as I am having epi/CMF and a teacher too! I started my chemo on 20 May and will chug on through until end of November before moving to rads and then tablets, with a stop off for surgery to take my port out. I have finished epi and I have had 2 lots of CMF. My next CMF is on 14 and 21 of October, so will just be a few days behind you. I am also on the TACT2 trial. You have to be in certain hospitals that do trials to be offered them, so that might be why it was not mentioned, there are also age, health and other criteria to fill for it. Anyway if I was on the standard treatment in my area I would be having FEC but epi/CMF is the standard treatment in other areas.
From what I have heard from others it is a swings and roundabout situation, that you either find one or the other worse. I found epi was good as it is one drug so not long in hospital each time. I skipped out each time and was fine till day 4 when a fog came over me and I became a sofa slug. No energy, others had to cook and was very sleepy but woke up on day 7 back to normal and then the rest of the cycle able to do what I wanted. My biggest problem was that it gave me the most quick drying cement constipation that you could not imagine so had to keep an eye on it in the early days and take laxatives or tons of fruit. The effects varied and I either felt physically worse or was tearful/down for a few days.It was a tough drug but the side effects were more intense over a very short period of time.
CMF is much milder for me and always feel ok but it is tough to go back in on day 8 and have another dose so quickly. That makes me more fed up. This one gives me the runs, cannot eat any fruit or veg really, and has affected my eyes after each dose for a few days. It is mild and I never feel really bad at all but the effects linger for longer.
You will also talk to people who had no effects on epi and found CMF bad. It varies a lot.
I have never been sick or even felt sick and have had no mouth ulcers either. I still have some straggly hair as I used the cold cap through the epi and lasted with a big hairband but no wig. I really hope you sail through this ok and please ask if I can help. I always eat a huge cooked breakfast in the hospital canteen before going to cushion my stomach from the drugs and also drink non stop on that day and days after. Don’t go near the kids, too many bugs.
Lots of luck and it will be fine. I am a real scaredy cat and I am still chugging along. Don’t think too far ahead
Lily x

Hi Carolj

I have put below links to two of BCC’s publications which you may find useful to read regarding chemotherapy. Hope this helps.

CMF fact sheet: beta.breastcancercare.org.uk/upload/pdf/cmfchemotherapyjuly_06_0.pdf

Chemotherapy for breast cancer: breastcancercare.org.uk/content.php?page_id=664

Kind regards,
Jo, Facilitator

Hi Lily
Great to hear from you - and yes please can I ask you all sorts of questions!! As you said it affects people in different ways but I want to be prepared (but probably not too prepared)!! What age group do you teach - is your boss being good to you?! My bc was found after routine screening in the summer - thank goodness we weren’t away - and once term started I’m sure I would have put it off (I’m nagging all my friends to get screened now!!). I only had my new class for 10 days then WLE etc - chemo was suggested as my choice as the lump was small and nodes clear but a grade 3. What a difficult decision - I just decided to go for anything that would zap it!! So here I am - amazed at the steep learning curve but so grateful for my awesome bc nurse at Basingstoke and this web site!

And for anyone/everyone…
I’ve only just worked out how to post pm’s - how do people keep in touch - is it all on the diferent threads or do you give e-mail etc on a pm? How do you know you have a private message - there aren’t inboxes are there?? Very confused!!

Carol x

ps thanks Jo for the links !!

Hi again Carol, nettiespaghetti? haha weelllll… nettie is short for Jeanette (which is my name) its what my dad used to call me, it then progressed into nettiespaghetti when i was a little 'un so there ya go :slight_smile:

8.30am? quite early then! mines not til 2.30pm

I’m not a teacher, but a T.A, should be in yr6 at the moment but my onc told me not to work so I havent been in since they went back in Sep, except to drop my son off (he goes to the school where I work) so I manage to see the other staff and have a coffee in the staff room.

what year do you teach? and are you working/not working?

Thanks everyone for your advice/links and experiences, it really does help to know that its not all bad!

Hi,
Just ask away, I am glad to help in any way if I can. I teach secondary pupils and have not been allowed to put one foot in the building since the end of March when I left. Health & safety and insurance apparently! I will go down to half pay next week and statutory sick pay will stop too, so heading for poor street until I go back. Because I was off when I was dx after finding a lump they count my SSP from that date and lose quite a few weeks, very unfair I thought as I went back right up to the day before the op. So I am now heading for incapacity benefit but my county council payroll won’ t tell me my new salary and the Gov dept won’t talk to me without it, so a bit stuck right now. I am glad you are having chemo as your dx matches my friend’s and she was not given it,only to have a recurrence 3 years later, so now on chemo and has secondary cancer.A;though we are all different of course and there are probably other differences.

Nettie I have been told no way to go into school because of so many bugs with 1200 pupils. Good luck to both of you and hope the first one goes smoothly for you. I have my next double dose on 14 and 21 October, Can’t wait!! LOL
hugs
Lily x

Hi Hope you don’t mind me joining you. I had my first Epirubicin today, don’t feel to bad just a little bit woozy every now and again, but I from reading your comments it sound like it will get a bit worse in next couple of day.

Good luck for tomorrow ladies, let us know how you get on!

Nice one gabba, thats one down already! Now you’re a fully paid up member of the red wee club!!

Take care all,

Kelly
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Thanks for the good luck - I’ll keep you posted. Hi gabba - great to hear from you!! How long did it take?

Nettie - I’m a Year 2 form teacher - 6 year olds - so won’t be seeing them for a while. I haven’t worked since the date of my op on Sept 15th & have been told not to due to the bugs!

Good luck ladies

thanks everyone for your good wishes :slight_smile: xx

sending all my best wishes and hugs to carol this morning xxx hope you are OK

Hi Nettie how did it go and where are you having your treatment? One down eh!!! Are you ok? Just feel spaced out & beetroot wee … but they did say first 24/48 hours for sickness … and to call if the anti-sicks don’t wotk … I have the ginger nuts ready (Bics that is)!!

Hugs to you 2 xx

Gabba, Annie 45 and Jackie 55 - how are you doing? (Are they your ages ???!!!) Lily are you having a "normal " time at the mo ? Have seen your posts - I’m sure one day I’ll be writing as much as you!!! xx

And curtain queen - how are you? Sorry IT skills lacking today xx