Round #4 of EC chemo - Sore mouth & tongue??

1 minute read time.

Well, not updated lately so thought I would put down how I’m feeling this time round.

Saw Oncologist on Monday 19/3 and mentioned all side effects including tiredness, steroids not seem to have kicked in as well as usual, no sleep, very emotional and the weariness seemed to go on forever. She wasn’t too bothered until I mentioned I had a sore mouth and tongue for a few days (now gone) which felt like the after effects of going to the dentist. Didn’t think much about it until I told Onco and she was very concerned ??? looked on her computer and said this was NOT a common side effect and went off to seek more advice. There was me thinking this was nothing. Anyway, she came back and said they would reduce my dosage slightly for #4!!!

Had round 4 of chemo (EC) on Wednesday 28/3 was really dreading it as had felt so lousy after number 3. Anyway, apart from some nausea first day everything seems to be working as it should this time and so far, feel fine. I know the steroids will finish tomorrow and will more than likely have a major meltdown again but as I know it is coming can at least try to control it a bit better.

Hope this helps anyone maybe?? as we seem to be on the same EC however, I am in front of you so might help.

Anonymous
  • I have been reading and contributing to the online community site for a few months now and have honestly found it a godsend for support, advice, laughs, hugs and the not so nice side of cancer we are all dealing with in the most honest way possible.

    After reading about the journeys some people are having and then I think about mine hmmmm….. how do I put this???

    Really easy compared to so many of you to name but a few:

    ???, ???, ???, ???, ???, ???, ???, ???, ???, ???

    And all others I have missed....

     Since I started chemo in January:

    I have not spent a night in hospital like so many of you

    I have not had a low blood count to stop my treatment

    I have taken all drugs given to me without question and have not had an adverse reaction to any of them.

    I have had NO unmanageable side effects

    I have had plenty of MANGEABLE side effects

    I have not had to change or ask for different drugs

    I have not had to spend days in bed as some of you have

     I ‘m sure there’s plenty more but I do get a chemo brain!!!

     So, I would like to offer my OWNadvice and what has worked for me and me onlybut might just help someone else.

     

    When starting out on the chemo train I changed nothing to do with my daily routine. I carried on using all my normal perfumed deodorant, moisturiser, shampoo etc etc. My thinking is why change if I don’t need to? If something suddenly has a nasty reaction I will change it then.

    I don’t use any hand gels, anti-bacterial wipes or similar, didn’t use them before why start now? Toilet is cleaned very day how many more times should I do it?

    So far have not changed any of the above and am now on #4. I’m not saying I won’t but have had no need up to now.

     Things I DID change were:

    Getting my shoulder length hair cut short as was told would lose my hair and this was best hmmm…….. well, l did it anyway and when it did start falling out was better to deal with. I then went and had a number 4 clip as was advised not to shave.

    I swopped pillowcase for silk ones, brilliant - would definitely recommend.

     I am going to list my diagnosis/treatment/drugs as this may help someone in a similar position:

     My diagnosis is:

    Left Breast, Invasive lobular carcinoma grade II. ER8 PR4 HER2 FISH non-amplified.

    My operation:

    Lumpectomy and partial Lymph node clearance as they were showing clear. Result showed more lymph nodes affected so went back in for clearance of lymph nodes. Eventually found 8/14 effected. Which meant the chemotherapy and radiotherapy for me.

    My chemo consists of:

    EC x 4 and T x 3 (Epirubicin & Cyclophosphamide) and (Docetaxel/ commonly known as Taxotere).

     

    Drugs I am prescribed each chemo treatment are:

    Emend 80mg anti sickness for 2 days

    Ondansetron 8mg anti sickness for 3 days

    Dexamethasone 2mg steroid for 3 days

    Lenograstim injections from 3rd day for 5 days

     

    These drugs have worked for me is all I can say.

     

    Side effects so far have been manageable.

    Yes, I have lost my hair however not all of it which is really strange, I still have hair on my head (bit like a soft hedgehog admittedly but I think it is growing!! Will come back to you on that as I am measuring from now so will see!!

    Also, not ALL hair has gone, I am quite a hairy person so don’t know if this make any difference.

    Tiredness has been the biggest thing to deal with and getting used to listening to my body and sitting/resting when I ned to. Always such a busy person so find this hard to do.

    Apart from all the niggly things we all get nothing much more.

     

    My further treatment after chemo will consist of:

    Radiotherapy

    Endocrine treatment

    Zoledronic acid 6 monthly

    Am pretty sure will go back on Letrozole as well.

     

    I know that when I was first diagnosed it was all very surreal for along time, I went back to work, I went on holiday and just carried on as normal really until the chemo started. I am off work now until chemo finishes and, even now, some days I don’t feel anything is wrong which is really strange. I have managed to stay positive most days and just think ‘this bloody cancer will not beat me’.

    I have a VERY supportive husband, daughters and friends who are there for me, this DOES make a big difference I know.

     This is why I say HOW LUCKY I AMcompared to so many of you and would just like to say a big THANK YOU for all your support to me and many others on the site. I always recommend this community to anyone I meet.

    ??? and ??? hope everything is all ok with you.

     Quite a long blog this one but if it helps one person then I will be happy.

  • FormerMember
    FormerMember

    Really helpful to hear good news stories.

  • FormerMember
    FormerMember

    Happy Easter to.all.

    Have upped my intake from paracetamol to paracetamol/co-codamol for.sore limbs after first.Tacotere on Tuesday past and white blood cell injection on Wednesday. Now have the white furry tongue with sore throat which I have read on here. Rang helpline tpday and they recommended phoning out of hour GP but even if I get a prescription today I don't think any chemists are open on Easter Sunday. Have had to run to toilet with "d" after eating 2/3 times for past couple of days and have had issues with itchiness??? Is this normal? Temp 37 which is normal but just resting in bed and around house over Easter break. DL

  • FormerMember
    FormerMember

    Hi DL

    Noticed you mention Paracetamol and Co-codamol ?

    Do be careful as co-codamol also contains paracetamol and you could be having too much of it taking both.

    You may be better off alternating paracetamol with ibuprofen which is paracetamol free and is an anti-inflammatory which can help with the bone/joint aches. Don't need to purchase the leading brand, supermarkets own brands of ibuprofen are just as good.

    Better still the April Chemo Club (link) in the breast group has just started so you could post these questions there.

    Take care, G n' J