ok so after 3+ years of hormone therapy, they put me on xeloda… i had so many hopes that this would work… NOPE. So now, they’re gonna put me on Epirubicin and Cyclophosphamide…I have NO idea what to expect from this chemo, as I have never had IV chemo. I’m petrified. Any tips on how I can prepare for this would be greatly appreciated.
J xx
Hi Poannie, I had FEC which I think includes those two and didn’t find it a hard chemo at all. I had a bit of a rough night after my first one when I felt as if I had the mother of all hangovers but there was no one more surprised than me when I awoke next morning feeling ‘normal’! After that apart from the usual mouth ulcers I sailed through.
Josie xx
Hi j I also wasnt too bad through treatment and had fec which includes 2 of youure drugs mentioned I HAVE PUT CHEMO TIPS WHICH HELPED ME AND LOTS OF OTHERS THROUGH CHEMO ON PAGE 2 of starting my pink road of chemo have a read they really helpfull tips from all the ladies on here thats been through it xxxx and good luck for youre treatment
Hi J, from friend’s experiences Xeloda either seems to work really well or hardly at all. I’m sorry the tablets haven’t worked for you and I hope the new chemo will knock everything back. Those I know who haven’t had any benefits from Xeloda have found other IV chemo worked really well. Take Care and Good Luck…xxx
Hi Joannie
I am really sorry to hear that the Xeloda hasn’t worked, not good news at all.
I have only experienced cyclophosphamide out of the drugs you mentioned. I took it as the C part of TAC in 2007 as part of my primary treatment, I had 4 cycles of Cyclophosphamide with Adriamyicin, unfortunately I did have complete hair loss and a few minor side effects, nothing that laid me low though, I was well enough to carry on doing whatever I wanted to. I am not sure whether the C bit of the AC caused the hair loss or the A bit! I did however have complete response :- the original 3cm tumour disappeared entirely and couldn’t be found even on ultrasound. I do remember the cyclophosphamide made my nose feel weird as I had the IV, it felt like I had sniffed mustard.
Good luck, I hope the treatments go OK and more importantly reduce your mets!
Take care xx
Hi J
I had FEC for my secondaries when 1st diagnosed 3 years ago, that includes the E and C that you are taking. The E definitely is the one that makes you hair fall out - generally just before your second dose. It doesn’t just all fall out though - I still had wisps left after all 6 of my treatments. I found that days 1 - 5 (after chemo) were grotty, ie nauseous and very lifeless however taking the anti sickness tablets that they give you really helped. At no time was I sick or even stopped eating, just felt queasy. Then, like a cloud being lifted I suddenly felt pretty much 100% after day 5, I got on with whatever I needed to do and also worked at my part time job. You have to be careful around days 10-14 as that’s when you immunity is at it’s lowest and my neuts count did got very low on 2 occasions so I ended up having the booster injections. My taste and smell changed as well and I found lemon flavours such as sherbert lemons really helped with the nausea as well. There are loads of tips on the forum about getting through (IV) chemo as mentioned and I guess we are all different but please ask any other questions. BTW FEC worked well for me and I hope EC works well for you.
Good Luck
Nicky xx
New development : slight facial paralysis on my right side of my face. Weirded out by it… doctors later today.
When it rains it pours!!!
hi poanni
that could be bell’s palsey.Its not sinister just odd looking. it will go away by itself. I had 6 FEc, and wasn’t sick just got tired towards the end of the cycle. It worked very well for me.
Make sure you drink plenty of fluids the day before and during treatment. It helps fluff up your veins and also vlears out the toxins more quickly. Also, keep your veins warm,I wear a pair of mitts to the hospital. They will give you a heat pad/bucket of hot water to warm them up too.
x sarah
So sorry you’ve had to change chemos. Devastating when a chemo doesn’t work, isn’t it!
I had 6xEC in 2009-2010 (my first chemo) and I found it very doable - my best “Christmas” present was to get results after two cycles, showing shrinkage of mets 
You probably know that the “F” in FEC is a chemo drug called 5-FU: this is also how Xeloda works, the substance in the tablets is converted to 5-FU in the tumour cells. So you’re not missing out on anything by having EC rather than FEC.
Re the intravenous chemos. Unless you have particular problems such as having had both underarm lymphs removed, it should be straightforward for you… I hope! Procedure may vary at different hospitals, but the IV nurse stayed with me throughout administration of “E” (the red stuff). You’ll probably get an IV steroid such as dexamethasone before the chemo. DRINK LOTS (of water, tea etc.) to flush the drugs through, “C” can irritate the bladder.
With EC the side effects kick in quickly but then wear off. Hair loss (from towards the end of 1st cycle) is not nice but treat yourself to special hats/scarves (Buffs with UV protection for the summer?) if wigs don’t appeal. It will regrow!
Hoping you get surprisingly good results with this chemo…
Hi J – sent you a PM here and on FB. M xx
thank you for all the advice everyone, but when it rains it pours. I have been admitted to Christies because I need 4x radiotherapy sessions on my skull… slight brain mets now apparently, but more concerned about my skull mets. Then to top it all off, going to Brum after the weekend as I have fractured my hip, and need it replacing… then back to start chemo.
Whatever/whoever is up there doesn’t like me much at the mo.
Oh J, I am so, so sorry you are having a really hard time. Can only offer you my very best wishes. I hope the rads go well and you can get back on treatment asap after your replacement. You take care and I hope things are more settled soon. Love Belinda…xx
Sorry to hear about your recent problems but just to say I am thinking about you too and holding out a hand to you even although I am in France right now. Hope things improve for you soon poannie; Val
Hi Poannie
Sorry to hear about all your problems, you are so right, it never rains but it pours! Hell, but you have to be tough to put up with all this treatment. I often tell people that we are stuck between a rock and a hard place - the treatment is almost as bad as the disease itself! I hope all goes well for you.
Sue x
Hi Poannie
As you say it never rains but it pours. I hope that all the extra treatment you now need gets you back on track really soon so that chemo can sort the buggers out. Good luck with the rads and then the hip operation, my goodness you really are going through it.
Nicky x
hi everyone. i got fitted for my radiotherapy mask for my head today… it felt like a spa! nice and warm and comforting, not at all as scary as i thought it would be! it seems i am having 4 fractions, so with the weekend looming, it looks as though my hip replacement isn’t going to be even contemplated till the end of next week…
thank you for all your support guys xxx
Oh s*d re the brain stuff as well. Everything crossed for you for all of this.
Ann x
So sorry to read what you are going through. Wishing you the very best of luck with your radiotherapy + hip operation.
Thinking of you
tina x
Just wanted to wish you all the best, it must seem like a mountain to climb at the mo, but hang on in there.
Linda
It has transpired that I won’t be going to Birmingham next week for my surgery, as it will be more complicated than first anticipated. It seems that I will be having a complete overhaul, total hip replacement with femur involvement… Much more complicated than my previous surgery, with a longer recouperation time on it. They are concerned that this will be too much time to wait with no chemotherapy, so the plan is being changed.
I have had my first brain radiotherapy session today, meaning that I have 3 more left (ending next Tuesday) I am to have some more radiotherapy to my broken/fractured side, to strengthen it up a little. I will then start chemotherapy sooner rather than later, to try and get my bone cancer under control. Once they are happy that they can stabilise it, I will then be sent to Birmingham Royal for my major leg surgery.
It’s kind of sent my head west, as I was just getting my head round the original plan of going to the Midlands next week… Still, there’s been enough consultants talking about me and to me, that they now have a definite plan of what is best for my treatment.