On second cycle and can’t believe how bad it has made me feel. Does it get worse or better and is there anything that helps? First cycle I lost my hair and had burning under toenails as well as being sick and ending up with realy bad cold which saw me hospitalised for four days, please tell me it gets better or at least that there is someone going through the same as me who will understand how I feel?? Any tips will be welcomed with open arms.
Oh, Mandally… so sorry to hear you’re having such a hard time of things. I’ve finished 4 epis and just completed my first CMF today. My first epi completely knocked me out and I could barely get out of bed for 4 days (even sitting-up for more than an hour was totally exhausting), added to that the chemo can make you feel really down for a few days so everything can just seem even worse. Luckily I picked-up after the first one, and didn’t find the rest half so bad. I hope your next epis are easier… and so far I’m finding CMF much easier than epi. Talk to your chemo nurses about any sickness and hopefully they can give you some better medication, also a good idea to ask your Onc about a flu-jab, if you’ve not already had one (I had one - and most Oncs seem to recommend it). I’d also recoemmend you get some mouthwash from the nurses to help prevent mouth-ulcers. Quite a bit of my hair hung on until my third epi - but I had a lot of it (think of the hairiest dog you’ve ever seen and imagine the mess it made all over the place!) - it was a complete relief to finally shave it off and just accept no hair for a while. Remember it will grow back sooner than you think (mine is already starting to sprout) and this is perfect woolly hat weather. Each cycle is a cycle nearer to the end - you WILL get through this.
Love KentishLass xxx
Hi Mandally. My second cyle of epi was hideous. I’ll have to behonest with you and say that they did get worse as the treatments accumulated and recovery took longer but everyone is different. I had cold cap and lost very little hair but now I’m on CMF and they don’t offer cold cap, my hair has been coming out in clumps so I took the plunge a few days ago and shaved my head. I already have regrowth! My first CMF cycle made me very poorly. I got a temp amd had an infection but VERY foolishly did not tell my Onc. However, my white cells must have been up to the job and saw off the infection. If it happens again, I will not be so silly and will get myself straight to the unit. My second cycle of CMF was a breeze - hardly knew I had had it and was back to normal within a couple of days (with the help of cyclizine and omeprazole!). Yesterday I had my first Tx of cycle 3 and so I’m hoping it will be as kind as the previous one.
Hopefully your Oncologist can give you effective meds to help with your side-effects. Take each day as it comes and although it’s probably easy for me to say, don’t think that you will end up in hospital each time. Catching a cold obviously made your side effects worse and some of the side effects I had with epi after first cycle were one offs and didn’t occur again.
Reflecting back, I started chemo in June and at times I’ve though that it would never end and this is how I’d be feeling for the rest of my life… but I can honestly say that it has gone so quickly. Just make sure on your ‘good days’ that you enjoy yourself. Meeting friends for coffee and a chat has helped me enourmously. If it had been down to me my life would have gone on hold but my partner and friends have made me keep going… even went to see ‘My Chemical Romance’ in Sheffield the other night and felt about 16 years old again!!
Lots of love and all the best
Carly x
Hi Carly
Nice to see another E-CMF person on the site - there don’t seem to be too many of us. Are you on the TACT2 trial like me? It would be so much easier if we all had the same side-effects to the treatments (those on the good-side, of course). Half of the worry is never knowing what to expect.
KentishLass xx
Hi
I am also on E - CMF and have found it very rough on Epi. Had sickness until the end of week 2. Been on 3 different types of anti sickness tablets and even though the last lot were a bit better still been sick occasionally and had a very dry mouth as a side effect. Also have really bad stomach ache for days on end. Feel totally exhausted as dont manage to eat a lot.
Hair started falling out after 2nd cycle. My daughter eventually shaved it off for me. I cried and she cried while she ws doing it.
I just couldnt bear the sight of it on my pillow every morning and blocking up the plug hole so this was the option for me i know from this site that some people like to hold onto what they have for as long as possible but that wasnt for me. I was lucky i suppose as it was short anyway so it wasnt such a shock. Am used to it now and can even look in the mirror again. Tie Rack do some lovely scarves. My daughter went into buy me a couple and the girl spent ages showing her different ways of tying them to make them look different and trendy. You can look like a pirate or mystic meg if you are not careful. ( you wont know who mystic meg is if you are not over a certain age like me) You can even wear with a hat over the top as well.
So i do sympathise Mandally. The way i looked at it was on cycle 2 i was half way through. Ive now had cycle 3 so there is only 1 to go. Everyone keeps telling me the CMF part isnt as bad. I hope they are not lying to me !!!
As for tips. A friend in the medical proffesion told me ginger is good for nuasea. Try and drink ginger ale (as in the mixer) or nibble on a ginger biscuit. Unfortunately i dont like ginger. A lady on this site also said a travel band bought from Boots helped her. So i have asked my daughter to get me one. I am so desperate to be honest if somebody told me tying a dried frog to my wrist would work i would give it a go. Not that i recomend drying a frog you understand (i am an animal lover) but you know what i mean. Most of all try and keep your sense of humour !
As i am unable to work and am at home all day with just my cat he listens to me when i moan and has watched me when i have sat and cried. Because hes a cat he doesnt tell anyone so i can put on my brave face when my family visit.
Sorry Kentishlass not on the trial.
Chin up Mandally love Annxx
KentishLass You won’t believe it but I have worked supporting women all of my life first in Social Work then in the area of domestic abuse and lecturing now rape and sexual abuse. I have to say that when it comes to supporting the supporters there appears to be a black hole. However, I am taking stock and asking myself what the lesson is here and coming to the conclusion that I have given enough and now is time to focus on my needs for a change. Lucky you being able to work from home - one of my dreams.
Carly72 It’s great that there are people out there who know exactly how I feel. I am not so sick today and thinking I may have turned the corner and can look forward to a few days of normallity. Good to hear that the CMF might be easier. Thanks for the boost.
Chadders Thanks for that you are of course right I am half way through epi hooray! Given what I look like right now with my lovely scarf affair I could be either mystic meg or a very small pirate. I should maybe set up a marquis and make some money while I’m without pay or hire myself out as an extra for Long John Silver. I even know someone who has a parrot I could borrow ha ha. I am so glad I came on this site. I think yesterday I was forgetting that this is temporary and I will get through it like so many others have. Looking forward to chatting to you all.
Mandally, No problem some days are worse than others as i know well. You have made me laugh.
Perhaps we should all get together a few of us could have a crystal ball and do the fortune telling the rest could do a stage version of The Pirates of Penzance.(not sure of spelling) Not sure if theres a parrot in it though and i for one cant sing .
Am off now to have some lunch. Its either soup, soup or soup or maybe i might treat myself and have mash. I cant eat much else at the mo.
You are right as well to think about you for a change. I have always been a giver and not a taker but i am now learing to ask for help and to be a bit selfish and think of me for a change.
xx.
Yes soup for me too yum yum. I am going to shave the leavings of my hair this weekend if it doesn’t come out by itself. did you use a bic style razor and foam or an electric shaver? and does it matter which direction to go - front to back or back to front? Don’t want it to grow back in like Groucho Marx!
Will try the ginger ale and ginger nut biscuits and make a party of it.
You have cheered me up immensly, love the idea of a stage production, thank you.
M xx
Pirates of Penzance sounds great! Can I join in too even though I’m a woolly hat wearer? Perhaps I could be the token chemo loony in the corner that no-one wants to know - which was a bit how I felt in my hige woollies when the weather kept blowing more hot than. Glad it’s finally turned for the worse, but not so good for you scarf-wearers! Ha, ha, Jim-lad! I almost feel guilty for having such a comparatively easy time of things on chemo - not had any nausea at all. But I put that down to 20 years of vindaloos ripping out my stomach lining before the chemo could get to it, rather than all those dried frogs.
Chadders - agree entirely about sense of humour.
Mandally - so glad you’re feeling better - ever upward. And if ever there’s a time to start to think about putting ourselves first (or more first, if that makes sense) it’s now.
KentishLass xxx
Mandally/ kentishLass
When my daughterr chopped my hair she used a proper head shaver only because her partner is going bald and so shaves his head all the time so they happen to have one. She sort of did back to front from the neck and then front to back from the face. Im no hairdresser though so dont sue me if you get patches! I think it has to be very short to be able to use a bic. Dont know about a normal electric razor as always used a bic for my legs. Isnt is funny that your hair falls out in all sorts of places ( i mean my nasal hair of course) but you still have to shave your bl***y legs.
Kentish lass you are quite welcome to join out production as long as you cant sing either. You can wear a woolly hat. I must admit that i went to my sisters last night and it was so cold ( just above freezing) i actually wore a thin woolly hat underneath my scarf . I must have looked a bit like a bag lady as i had layers of clothes on as well as i am really feeling the cold at the moment. Do you think we will always be a bit eccentric when we have finsished out treatment and wear woolly hats and stuff . As normally when im at work i wear a suit, make up and use my GHDs every morning. Or do you think we will have a bonfire in the garden and burn every scarf and hat we pocess while dancing around the fire drunk ???
XXX
Hi,
I had my third epi last week and felt awful, ended up back in hospital as I couldn’t stop being sick. One more to go then CMF. I am using the cool cap and hanging on to my hair but if they don’t offer the cold cap on CMF and it falls out anyway why am I bothering. I hate staying in the hopital for two hours after the chemo has been given, just want to get away from the place.
I haven’t shaved my legs or underarms for weeks now and this week my mascara looks strange - probably due to gaps in my eyelashes which I hadn’t noticed.
I have followed Kelly’s tips and bought the toothbrush, mouthwash, ginger ale and pineapple, already had the thermometer and lucozade.
It’s great to hear other peoples views and realise you are not alone.
Chadders/mandally
I definitely intend to remain a bit eccentic (only when it’s cold, though!) - as I love my collection of Bobbles and Earflaps. I look like a Sherpa guide. It’s a real surprise as I never, ever wore a hat before all this started.
When I shaved my head I thought about keeping a few strands for future reference as I’ve heard that when it grows back it can be a different colour/shade… but then couldn’t be bothered. Perhaps I will skip the grey period and head straight into snow-white! Now that would be strange…
Hi Diane 1709
Sorry to hear you’re struggling with epi - hope things really improve for your last one and the side-effects ease off loads with the CMF. Good luck with hanging onto your hair. I’ve still got most of my top lashes, though seem to have lost most of the bottom ones. Also managed to hang onto my eyebrows, which I’m really, really pleased about.
Nicola xx
Hiya
Ive finished my treatment for now…well apart from tamoxifen…but got years of that yet lol. I also had e-cmf, i found the epi side of it murderous…and seemed to get worse each time. I was only ever sick on the first one though. I found that as long as i was back in bed within an hour of having the epi i could sleep through the initial onset of feeling yack. I found that it was for the first week and half that was the worst…and then getting a normalish week before having to go back again. The constipation was a killer, the chemo bloat did my head in…and it was cold on a bald head! Now the CMF…now that was good stuff. I know that sounds unbelieveable but i had fun on that one. One of the chemicals makes you feel incredibly drunk…which is always good for a giggle…and you get a stupid fixed grin on your face for hours…well i did anyway. The only problem i had on CMF was the constant eating…but thats just part and parcel…your im full now switch gets turned off. It seems to be if the epi is hard…then the cmf is a walk in the park…i only ever got a bit of a tight tummy the next day and felt tired and that was about it.
I found chewing gum helped when having the epi…takes away that been to the hairdressers hit you get at the back of your throat. I also decided whatever food i fancied to eat…then thats what i would eat…and some strange concoctions were created.
I lost all my hair on having the epi…apart from eyebrows and eyelashes. Was great not having to shave anywhere. It started to get fuzzy on my last epi…and then started to come through with a vengence. I finished my chemo end of july and now 4 months on ive got a really dodgy 80s hairdo thing going on. Chemo sucks cos it has to be harsh…but its dooable…just doesnt feel like it at the time.
The constipation isn’t good, but my diet isn’t helping. i know all about healthy eating but fancy really tasty and fattening food .- pie and peas, pasties, bacon sandwiches, think it must be because taste buds zapped.
Thanks Buttons, its nice to hear from someone who has come out the other side, im banking on the CMF being easier as like you and some of the other ladies above i am struggling with the Epi part. At least now i know what my dog felt like when i used to take her the vets. Because she knew where she was going she would plant her bum on the pavement outside and refuse to budge. Well thats what i feel like doing when i go for my chemo but commom sense prevails. Next week is the last Epi though so onwards and upwards ! (i hope)
It will be nice to eat something other than porridge and soup ( not together ! ). I only have to smell some food and i am running for the bathroom .
Nicola i was wondering about the hair colour as well. To be honest im not sure what my natural colour is anyomre as i started going grey in my early 20’s heredity on my mothers side. So i have coloured it for years. So i think mine may come back white but then again i will be so grateful when it does i dont think i will care what colour it is.
xxx
Hi to everyone on thread. I have not had the energy I was born with since I was last on. I am feeling better today. The thought of going back for more has me hiding under the table and wondering what I could do to avoid going LOL! All of your hints and tips have been great and I wanted to answer but couldn’t figure out how to reply duhhhh! It just dawned on me that I hadn’t signed in LOL think the chemo is affecting the old grey matter into the bargain. I am so relieved to hear that the CMF is likely to be kinder. Haven’t shaved the old napper yet - couldn’t be bothered but boy am I a fright. I could make a fortune tricking or treating I am sure. Still two more Epi’s to go and then I can look forward to it coming back and the weather is just right for a wooly hat. Best wishes to everyone
M xxxx
By the way Diane my chemo nurse has told me that the CMF doesn’t contain the hair falling out drug so if you still have it when you go on to that I don’t think you will lose it.
M xx