hi there,
has anyone any tips? ive just had last tax but feel like my bones have gonbe rusty all my joints ache it doesnt seem to be going and im having problems walking up hills. shud i be taking cod liver oil or evening primrose? does anyone post tax know when this gets easier. also any tips to ease hot flushes? or help taste improve? rachxx
Hang on in there silvershar… poor you, what a dreadful time you are having. I am also having surreal feelings of an immovable force taking over my life! I am only a stage or so further on than you having just started fec last week so can’t answer many of your questions but I am sure that there will be some one here who can…I sent an enquiry to the “contact us” bit which was answered sympathetically and quickly.I also need to work to live, being self employed with no insurance I have no choice and am taking it one day at a time and trying not to worry too far in the future.I think that the side effects are very different for different people and hopefully your oncology nurse should be able to help you minimise them…the advice seems to be make sure you tell them as soon as possible about any problems. Have you heard of the ice caps? They are supposed to work in 1/3 of cases, I get them here (Argyll) on the NHS, not sure what it is like for the rest of the UK. The treatment does take longer as the cap has to be insitu for 3/4 hr pre treatment and 2 hrs post. It is really painful to start off but this does get better after 10 minutes and becomes bearable. I saw the wig maker last week to get a wig as well and she was very supportive re hair loss and advised me not to get rid of it too quickly even if it does start to come out. She says that with long hair even with 50% loss it is sometimes better to hid the top bit with scarves etc and keep the long bit…
hi
I had 6 tax last year.I spent the first 3 days after each dose in bed as I was unable to move!
I found a hot water bottle useful for aches and pains,as well as a nice soak in a warm bath (not too hot as this made me dizzy).
I lived on chocolate milk,ginger biscuits,ice lollies and vegetable curry. Could not stand the taste of meat.Also found homemeade butternut squash soup with curry powder added or sweet potato and red pepper soup just about palatable.
I could not eat a lot so had several small meals throughout the day.
Also had problems with the steroids and sleep.Had to have a very early breakfast and lunch to get the doses in early,otherwise got no sleep for a week.
Best of luck and try to do small things which make you happy.
Love Lucinda xx
Hi girls lanzoprazole from chemo unit or Gp is great for heartburn and i also too neurofen and tramadol for aches and boney type pains.I also take a cod liver oil tablet daily. there is some great tips on page 2 of my pink road of chemo thread ( dont know if already mentioned here ) for getting through chemo and taste etc so have a look it certainly helped me through mine xx
ps Also make sure you take steroids all before 2 pm as you wont sleep so take 1st dose early
Hi Debs, thanks for your tip I’ve taken a note of Omeprazole and I’ll ask my doctor about it next time I see him. I don’t think I’ve ever burped as much or as loudly in my life!!
Probably getting a little ahead of myself, but in general is your first session of chemo likely to be indicative of your following sessions? Or is it different everytime? Many thanks, Donna xxx.
Donna I found each chemo was different. I found number 4 was the worst. I had to stay in bed for a couple of days. I think this was because my neutraphils were lower than normal so the chemo probably wiped them out altogether for a while. Some say it has a cumulative effect but 5 & 6 weren’t so bad so its not necessarily a case of the more you have the worse it gets. Although the tiredness does build up.
I’ve just found out I have to have 4 doses of TAX as well now which I’m really not looking forward to (well who would?) because from what I’ve read on here it seems the side effects are much worse than FEC.
Hope the side effects are kind to you throughout
Take care
Debs
x
Thank you feeC - x hugs and more hugs to you for your advice. never thought of keeping my hair just to get it cut as i dont want to do it injstice by keeping it and letting it look terrible. i just dont know what to think feel expect from chemo. is chemo all FEC and TAX these are the only 2 types i read about?Shar xxx
My top tip is always have a packet of mints to hand. I had 6 courses of taxotere finishing in December, and I know a lot of people worry that the side effects are much worse than other chemos but I didn’t find it too bad. However I did suffer badly with taste changes and had a horrible taste in my mouth for about a week after each dose. I barely ate anything and just sucked mints. Saying that, I put on about half a stone so maybe it’s not such good advice.
Hi Debs, had to phone my chemo nurse this morning, as I’d put in quite a night with stomach pain, and thought I’d let you know that your dx was bang on!! Spoke to my gp and had the omeprazole within the hour, and the relief was immense!! Thanks very much, Donna xx
hi girls just finished 6fec and 3tax the se’s were diferent on tax to fec but cant say one was any worse than the other . its unpleasent but you have a better time of it each 3rd week before you have it again . xx rach
hi all, had 4th FEC last monday all i seem to do is sit watching telly cant be bothered going out since lost my hair, hairloss realy has had a bad effect on me, doc says ive got depression i need to set goals of geting out easier said than done, just want to be 6 months down line !!!
Hi Ladies
Haven’t been on the forum for a while but thought maybe my experience might help.
I has 6 x FEC May-Aug 2009.
Hair - I used the ice cap and lost 50% hair volume. My hair is shoulder length and the bottom bit stayed pretty much so wore wide hair bands and had a fake bun piece that I would pin up. Nobody noticed! I did wear a wig when I returned to work mid Sept - basically cos it was so easy - and again no one noticed and I got loads of compliments about my hair. By the end of Nov I had my first hair cut and stopped wearing a wig although my hair was pretty thin but growing fast. As my son was getting married in May 2010 I treated myself to hair extensions - can really recommend them they made me feel great and looked natural and give you the length and volume whilst your own hair is growing.
Chemo - I drank 2 litres of water a day for 2 days prior to chemo and for 3 days after. I made a jug up of weak juice and forced myself - I think keeping hydrated really helps. I kept a diary and would mark out of 10 how I felt - on chemo day it was usually 5 but by the end of the week I was up to 10 again. Eating little and often helps too plus stem ginger and peppermint.
Work - I had 4 months off but would have come back earlier except for the swine flu scare as I work in an open plan office. But I had a great time lunching with friends and looking after my grand-daughter when I could - how often do we not have to clockwatch! Personally I found it all more bearable by keeping busy and trying to be ‘normal’.
Hope some or any of the above helps - you will get through it.
J
Hi Jet I was very intersted to read your tips on chemo and glad you got on as well as you did, though i know even that is still hard i am imagining - actually imagine all kinds im very scared re the chemo, i have very long hair and have read your comments with interest, some people go and get it cut which i am consider though would hate it so much… just knowing what to do for the best as everyone is different…Shar xx
Hi everyone, just looking to see if anyone has any tips for your head/scalp when your hair is starting to thin/fallout, the “pins” sensation is really bad just now and even the painkillers aren’t helping and I really need a good sleep.
Hope everyone is doing ok and good luck to all the fec recievers this week, fec2 on thursday for me if bloods come back ok today x
Hi Biff
I am a week on from number 2 Tax of 6,and my hair started falling out 2 weeks after Tax 1. I had already had it cut short before starting my chemo, then when it was coming out over the kitchen surfaces and on the pillow i felt quite stressed so asked my OH to shave it all off 10days ago. It is patchy now, and it feels like a velcro head, but I wear a buff hat and this week I went shopping on my own to the supermarket in my new wig from the hospital. It feels a bit strange at first but I think its better for me at the moment. Will see how I manage when the weather starts to warm up!
Take care
Anne xx
have just had my 5th chemo (FEC), the 4th being a change to Tax which was awful. i ended up in hosp for a week so ill and Tax was discontinued and i’m back on FEC. i’ve found Fec not too bad although now i’ nearing the end, with only 1 to go (hooray) i find that i’m tired ALL the time and have absolutely No energy, which is frustrating asi find it hard to sleep at night!!! i’m also getting more breathless, even doing wee things, but at least there’s light at the end of the tunnel. just wondering how long after my last chemo that i’ll start to get some energy back. any advice would be very welcome
I will be having 3rd FEC next tues out of 6. I used the cold cap the 1st time but 3rd week in it was falling out quite alot so i didn’t bother with my 2nd FEC, My 13 year old daughter shaved it off 2 weeks ago now, she found it very funny and i am glad that i got her involved, but 2 weeks on personally i am really struggling with it. i’m finding it hard to look in the mirror as i do not see myself. I am 36 but do not feel it right now, I am also on zoladex as myself and partner would like to have a family, cross fingers. The night/day sweats and hot flushes and cronic banging headaches are making my days quite But all in all i am not feeling as bad as i thought i would, i have not felt sick once, and am getting used to the 2nd week not being the best week. My partner has the patience of a saint.
Hi Anne thanks for your advice I had actually thought about shaving it off yesterday but I couldn’t bring myself to do it. Spoke to OH last nite and he says he will do it for me so 2nite the whole lot goes, I have my wig and have worn it a few times when out but this is it now !! hopefully I’ll be ok after a few tears have been shed and a few chocolates have been eaten!!
Luckyd that’s what I am worried about most is my reaction and emotions as when hair started coming away this week I have been an emotional wreck, crying everytime I pass a mirror or when hair comes away in my hand. This week has been the first time I have cried and I think OH was surprised that I did as I have been very positive throughout, he has been a saint too as have my 2 sons. My 6 year old told me this morning when I told him I was going to hospital to get my medicine “don’t worry mummy I’ll take good care of you when I come home from school” then the tears came flooding again !!!
fec 2 went well 2day and have had an injection of anti-sickness and more to take over the next few days as I was floored with “constant hangover” symptoms for 9 days post fec1- so fingers crossed.
Hope everything goes well this week with treatment and that everyone keeps well.
Lizz xx
hello all
Biff— i totally understand where you are coming from, im one week post fec 1, i used the cold cap and im not washing my hair, i cry when i try the scarfs on, i cry when i think about losing my hair and lashes as they play a important part in my apperance, im never seen without my hair and make up,
if only we could keep our hair, its so unfair for us to go through it, i just hope i find the strength
love and hugs
Donna
xx
hello everybody, i have been experiencing the symptoms most of you have. my eyes have started to get sore, watery, feels like conjunctivitis, can someone explain to me what happens to your hands and feet on tax
please thanks liz to all the ladies that are struggling with the loss of their hair, the first time i got diagnosed 10 years ago i was absolutely heartbroken at the loss of my hair, when it grew back it grew back stronger and thicker than it was before, this time i havent been at all bothered,BUT first time my husband shaved it for me, THIS TIME i was so peeed off and angry i shaved it myself, i wasnt going to let this revolting disease take anything else from me i did that myself and felt 100 times better after i had cheated cancer and took my hair myself Am i going mad, or can any of you get where i am coming from???