Iam starting epi on wed and would like anyones experiances on this chemo got 4 of these then go onto cmf
Hi Joanne,
It sounds as if you’re on the TACT2 trial… there are loads of threads relating to this, so just put in a search and you’ll come up with lots of advice. I was on it last year… I started the Epi in early June for 6 months, then rads… finished all the treatment in late January… whew! I’ve come through the other end in one piece!
Good luck with it all… I don’t want to repeat what you can read elsewhere, but just to say that with hindsight, chemo was better than I was expecting it to be. Yes, it was a bit of a roller-coaster ride, but as you’ll read many times, it’s all “do-able”…
All the best,
AliS
Hi Joanne
Yours is a hard question to answer because epi seems quite random in how it affects people… I’ve finished epi and am on xeloda tabs now.
Some people are knocked off their feet by epi, others are like me - i felt grotty for a couple of days and then picked up quite quickly but i didn’t have any nausea etc… it does make you feel tired and the steroids can make you fele liek superwoman!!
Best of luck with it
Jennifer
Hi Joanne,
We have spoken before, as I am on the TACT 2 trial too, with same drugs as you. I had my first epi on Tues 20 May and was amazed to get no sickness or nausea, whether luck, treatment or following instructions to take tablets, I am not sure. I had slightly a acidy stomach and have to watch what I eat or drink later in the evening. I could not believe how lucky I was, as I was really expecting to die on the spot, if I am truthful as I have funny reactions to drugs sometimes. Could not have any fruit, cream or much caffeine but even if I did could overcome this with tablets. So had 2 days of really ok followed by a red face and sleepiness overtaking me. The tiredness creeps up from day 4 and getting worse. I feel like I am in a bubble today (day 6)and visually I struggle with too much tv, computer, etc but sleeping half the day. So all in all I am really happy to have no pain, sickness or nausea and think being tired and a bit foggy is a very acceptable effect from such a strong drug. No-one can guarantee how you react but we are just having one drug so one set of side effects. It is very do able, so try not to worry too much. Let me extole the virtues of Jacobs cream crackers, which save my life every day, so get something bland you like. On the day concentrate on flushing the drug through as fast as you can. Epi irritates the bladder and you will know from the colour of your urine when you have got it out. Drinking loads gets it out and may or may not ease the side effects. It gave me something else to concentrate on anyway.
Thinking of you and keep in touch. It is really good to think that one is over, that is the best bit of all
Hugs
Lilyx
Thanks liliy I have took everyones tips on board and hope iam prepared for all eventuallaties lol I have gingers nuts, ginger ale, pineapple juice, lucozade , plenty of water. anti sickness bands, mouth wash, mouth gel, painkillers, antacid, anything ive left out lol let me know
h
Hi Joanne
Like you I was doing my best to find out ahead of time … the old thread I started “Shopping List for Chemo - any recommendations?” might be of help?
good luck - it’s not as bad as you think
love
FB xx
thanks fiz
Kinty
Hi Joanne
I have had same chemo as you are having and I was terrified at the thought of all
the side effects- and guess what!- apart from one bout of mouth ulcers and a little
bit of constipation (which is easily treated) I sailed through it all. No nausea or
sickness. I had to change my eating habits- no spicy foods but I still had a glass of wine most nights after the third day. Obviously your body knows it has an
‘alien’ and very toxic drug swimming around but you will be given anti-emetic and
steroid infusion at the time of treatment and both for three days after. Tiredness was not a problem. I didn’t really want to sleep during the day so I carried on as
usual and had early nights instead.
Your Onc will watch your white cell count and if you get problems there is a solution which will make life easier. At the beginning of my Epi my count went down. I had injections for three consec days to bring it back up so my next treatment wouldn’t be delayed.Someone told me about a ‘one off’ injection
called PEGFILGRASTIN which you can administer yourself or whoever.
I had this after each Epi shot and it was great. My husband had the honour!
It is expensive but I persuaded my Onc to let me have it to allow me three free days instead of trailing to the Hospital.
I planned my life around my Chemos and didn’t let them stop me enjoying life.
You’ll get through this and I don’t know your feelings about hair loss solutions but
I got two lovely wigs before I started Chemo.We moved house just after I started
and to this day my new neighbours don’t know that I was having treatment for BC.
Sorry this is so long winded but I hope I’ve reassured you Joanne.
Be thinking of you- Good Luck
love Kinty x
thank you kinty i only hope i can sail through it as you did fingers crossed I want to have as normal a life as possible. As for the PEGFILGRASTIN can you explain this a bit more sounds just the ticket and is it a normal injection as I would have to do it myself as my kids were bad enough changing my dressings there was a lot of sorry’s said I found it so funny so I think the thought of stabbing a needle into mum would horrify them, What is the three day thing you were talking about
Joanne,
Good luck and lots of love on Wed as you start and hooray the first will be done. Just go with the flow and see where it takes you, fingers crossed for smooth sailing.
Lily x
HI Joanne
I have just finished by 4th Epi and about to start CMF tomorrow.
In regards to the side effects I felt tired had one or two mouth ulcers headache constipation heart burn and felt sick but this got worse with every treatment especially the feelin sick. Went off food but then I ate food I fancied found that this was better.
Got through it all though even when i was ill and had to have one of chemo delayed for 2 weeks.
Just remember every one is different and side effects are different.
Good luck
Sharon
Hi Joanne
Let me explain about PEGFILGRASTIN based on my own experience. On Chemo your white cell count can drop and this leaves your immune system vulnerable to infection. When I was on Epirubicin at the beginning I had my bloods checked on day 14 of my three week Chemo cycle. When my white cell count went low my Oncologist suggested delaying my next Chemo(which I didn’t want to do) or alternatively he could give me injections three days running to boost my white cell count. Those three days would have been during the week prior to my next Chemo which is usually the week you feel best and I didn’t
want to spend them running back and forward to hospital. Then another patient
told me about this ‘one- off’ injection which you take home on the day of your Chemo, stick in the fridge overnight and inject approx 24 hrs after your Chemo.
It goes into the fleshy part of your tummy( the nurse shows you how to do it!)
and it means you don’t have to worry about your blood counts until your next
treatment. It’s so easy to do but some Oncologists don’t like artificially
boosting your white cell count, so I said to him ‘this is my life and if there is
something I can have to make life easier then why can’t I have it?’ He gave in…!
and it was great.
I guess I can be ‘bolshy’ at times but sometimes you have to push your Doc
for your own sake! You’re the one going through this- not him(or her)!
I hope I have clarified this Joanne but if not let me know.
Good luck!
Kintyxxx
I’ve just had my 3rd Epi, one more then on to CMF. I had constipation the first weekend when on steroids, relieved by Senokot. Heartburn relieved by Gaviscon, but for the second Epi my onc prescribed Omeprazole capsules once a day, which work even better. Took all the anti sickness meds and have escaped any nausea or sickness until the 3rd session last Friday, when the cold cap got to me and made me feel very wobbly, not actually sick and ok when I warmed up. I have gone off tea, didn’t like wine anyway, and the onc said to avoid chilli and curry. I eat fairly normally, take a multivitamin/mineral, extra Vit C, also Co-Enzyme Q10 and manuka honey UMF15 (this is delicious spread on the All Bran based ‘Go Cake’ on another thread, and also good for constipation). I haven’t had a nasty taste at all, may find that on CMF. Also have been lucky with the cold cap, hair is thin but still there. Sadly my waist is thicker instead!
Joanne
Good luck , thinking of you tomorrow and hope you sail through this. I am on day 8 today of the same treatment, first dose and feel great now. I just suddenly all went when I woke up. Number one really was not bad now I look back on it.
Hope all goes smoothly. Just keep calm and you’ll be home again before you know it.
Hugs
Lily x
Hi: Had my first Epi yesterday and 24 hours in absolutely no side effects apart from the pink pee which has now gone, stick a pin in me and water will come out! I’ve drunk gallons but then I always do. Can’t believe it will stay like this but am making the most of it - back at work and no probs. Going to see the wig makers on Friday which should be a laugh - do I do Raquel Welch or release my inner Dolly Parton? WHo knows.
luv to all
Julia