hi
Iam about to have my last epi and then going onto CMF can anyone tell me what to expect on this as I have had no side effects on Epi,
Joanne
Hi Joanne,
I didn’t really have any probs with the Epi, and I had even less with the CMF! I was warned that I may get a sore mouth and also may get an upset tummy and diarrhoea. To prevent the sore mouth I always sucked on an ice lolly whilst the chemo was being given, also I was sent home with some calcium folinate tabs to take each time for a few days after. I never got a sore mouth at all so I guess it all worked. I did get an upset tummy after the first couple of sessions but I soon found a way round this too…I substituted my usual high fibre diet for one with much less fibre in for the first couple of days after each treatment. This stopped the diarrhoea and I never had a bad tummy again.
I found I bounced back really quickly after each CMF. I had little or no nausea and felt pretty ‘normal’ for the most part. Also, my hair started growing back v.quickly and by my last session I was going commando!!!
Take care and I wish you well as you continue your treatment,
Kelly
-x-
Im coming up to my last 2 sessions of CMF and then my chemo is completed. I started on Epi and have found the side effects are virtually non existant. I feel woosy as the drug is going in and i have a nasty taste in my mouth but i eat sweets or take a drink in with me and it soon passes. I have had one ulcer which lasted 2 weeks and was very painfull but was given a mouthwash and this helped. My hair has grown back to the point i dont wear anything on my head and have a look of Demi Moore in GI Jane!! The nausea is also non existant on the whole not the worst experience but still wish i wasnt having it. Good luck and i hope you dont suffer too badly.
Lisa xxx
Thank you ladies
How long did you hair start growing after your last epi.
I sooooo want my hair back lol. I have 8 cmf coming up over 4 months
Joanne
hi. Joanne, we have spoken before but I am about to have second cmf thursday. I didnt have many side effects from epi either.
on the up side the taste in my mouth has gone, didnt take as many steriods and do not have a constant craving for food. luckily have not had the runs but feeling more tired, back aches more and shoulder feel tender to the touch for first week. ohh and the typing is getting worse
how did you get on with the request for a line or are you still waiting for appointment. Hope your arm is not so painful
Lynda
My hair started growing back more or less straight after my epi finished. I too have had 8 cmf over 4 months last 2 coming up next one tomorrow then hopefully done on the 1st aug. Everyone is different but i was told the cmf thins hair so you should see some regrowth quite soon. Good luck and keep me informed on how you are getting on its a long haul but youll get there i promise xxx
Hi: HOw nice to hear from you guys who have not had horrendous times with epi - thought it was just me! I have 4th epi next week then on to the CMF - saw my Onc Prof on Monday for check up and he said that most people have trouble with epi but CMF is better, he thought I should feel ‘very confident’ about the next lot. However, I don’t take it for granted and just treat each one like the first one.
My only real problem was losing the hair - but the wigs look great, bit hot when the sun comes out but that hasn’t been too much of a problem so far in this so-called summer. I had one tiny mouth ulcer but zapped that with mum’s old remedy - bicarbonate of soda - hurts like hell but kills it dead.
Let’s hope we all keep going in the same way - I do get fed up when the Prof tells me: then we will do the rads straight after the CMF then its 3 yrs on Tamoxifen, then 2 years on something else - tuned out at that point so can’t remember what he said! However have another check up with him before the end of CMF so can get the question list ready.
Good luck to all and keep laughing!!
Julia
XX
Hi,
I am along for the ride with you guys too. i think we will need some serious support to keep going back for the second dose, but heartened by those of you coping so well, thank you for that. Very anxious about chenging. Epi has steam rollered me for 4 days each time and the mouth has been vile, visual disturbances and a drippy eye in week 3 each time. I had epi 4 this Tuesday and the big effects should hit Fri to Mon just feeling like I am preggers right now, eat little and often and don’t get hungry. I am nicely tangod so everyone thinks I look great. LOL LOL!
Then on to rads and the hormone therapy. I think we get a spell on Tamoxifen then move to aromatase inhibitors to get the best effect. Keep chugging along everyone
Lily x
Hi,
I’ve had two lots of cmf and i lot to go and i can say its a lot easier than the epi and the tax. I have had no major symptoms, and the hair is slowly starting to grow back. I also asked them to reduce the dose to 4mg as i haven’t suffered with sickness and that seems to upset my tummy even more than the cmf. What i have found is when i have the second dose it does knock me out a bit for two days but other than that i’ve been fine. I’ve only got one more to go then i move onto rads and tamoxifen.
Hope this helps and good luck
Sukes
Thank you ladies
Very reassuring for me
I go for my hickman line the day i get my last epi double whammy. I’m not looking forward to it at all anyone else had one and how did they get on.
Im also exoeriencing pins and needles in my hands anyone had this.
I dont want to go back to wotk till my hair grows back a bit as I work as a delivery driver for somerfield would scare the customers lol who by the way want me back as soon as oss as there all missing me awwww bless them.
Lily good to hear from you again.
Joanne
Hi joanne,
nice to speak you again and everyone else here of course. I have just fallen asleep on the sofa for 2 hours and am now boiling hot so am not expecting a good night. These darn steroids have caught me out!!
Sukes can I ask you which you had reduced, I was not quite clear what happened? I understand we have it 2 weeks in a row because the dose is too much for anyone to have in one go. I am having all mine iv, well into my port, but I know some people take tablets and others have the C as a a drip if they get woozy with it. Any info would be most helpful as I am getting nervous about changing drugs.
Jo I think you will be pleased once the line is in as it will help your arm and no or less vein stabbing to put up with. Have you been massaging the veins as that is supposed to help? I have no arm or vein trouble as they sent me for the op and delayed chemo until it was done after struggling to find any vein for initial bloods. Just scared witless I guess as been ok since but they burst the veins very easily so running out unless they use my inner elbow. Wish I had use the other arm more for blood tests when preggers each time. Whoever thought about BC even? Not sure I even knew anybody who had it, they just kept quiet I reckon. You will have a scary bit going for another op I know but have not found anyone who regretted it once they started really using it and we have 8 more b things to go after epi!!! I so feel like jumping ship early but will do my best to hang on if you and others like you do too
Big hug. You will be fine
Lily x
Hi ladies your comments have been very reassuring.I have completed epi and had first cmf today mood low today due to ongoing problems re venflon insertion,9 attempts with 3 different staff due to my crap veins. Requested picc line again and could have wept when the BCN was told that a patient had cancelled and I could be taken less than two hours later. When I had previously asked for a picc line I was told no not keen due to risk of infection etc pretty p,d off as I am a ward sister and have nursed patients with picc lines. The x-ray staff were great and cheered me up no end teasing each other etc I felt that I had laughed from the moment I went in. Going to bed a happy bunny and hope the hot flushes are not to bad.
Take care ladies x
hi lily
I’m not really too worried about the line as ops dont bother me really. But will let you know how i get on.
it wasnt till I read you comment that it got me thinking ive not even asked how the cmf is going to be administered not like me at all i usually find out thing before they happen. So I will ask when i go next tuesday and will let you know. Ive had a bad day today which I wasnt execting felt great yesterday and got loads done Gardens etc. But woke this morning with sore head feeling sick first time since i started maybe I over did it. but tonight i’m getting pins and needles in my left arm which is the arm they cant use dur to surgery. Dont know if this is normal but between this and the phlebitis in the right arm I’m beginning to feel useless. OH has gone to England to work for a while but when he calls to find out if i’m ok I say ye i’m great as he worries about me but I would love to be able to tell him but he has enough on his plate could really do with a cuddle right now any offers.
Joanne
Joanne,
sorry to hear you are feeling rough mate. If you weren’t at the other end of the UK I would be round for a film and a chat, or send the tank top terror round to give you a special!!!
Be honest with your bloke and he will probably be home with a nice pressie when he gets back. Have you asked about the pins and needles? Sounds like the line will be good for you. Just annoying one more thing to get in the way when you try to sleep. I like to sleep on my tummy but have been stuck on my back since 1st April, first the op, then the 2nd op and now the rotten port. If I even lie on my side it really hurts when I wake up and gets bruises round it.Still at least I don’t have the manic vein searching and 2 weeks in a row would be really cr@p don’t you think?
Going to bed in a sec to see if I can sleep.
Big hug
Lily x
Hi Lily,
I asked them to reduce the dose of the ondestdone - i think thats how you spell it( cant be bothered to go down and confirm spelling) its the anti sickness dose - normally they give 8mg while administering cmf but i haven’t suffered with sickness so i asked them to half the dose each time. Its just that it gives really bad constipation and by reducing the dose i can have a poo a bit quicker.
good luck to you all - i’m sure you’ll be fine - i 've just gone one to go yippee - but don’t like the weight gain
Ohh i’ve noticed i can’t stop farting on the cmf. Its got to the stage i’m like a trumpet in an orchestra they are loud and smell and non of the kids sit near me. i think i will count how many times i fart in a day.
sukes
Thanks Sukes,
OH my if the farting gets worse I might just take off!!!
Hugs
Lily x
Oh Gee thanks LOL
I never fart in front of anyone especially my boyfriend so thats really reassuring.
I never take my anti sickness tabs anyway so hopefully it wont be that bad if my face turns red and i suddenly run out the room every 5 mins how do I explain that one,
Joanne