Starting Chemo

This topic contains 5 replies, has 4 voices, and was last updated by  eve 12 years, 8 months ago.

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  • #98869

    TinaP
    Participant

    Hi.
    Went to see consultant yesterday, and have been given the 15th March as the date my chemo will start. I am taking part in the MyelomaX1 trial.
    I will be on the intensive pathway, culminating in stem cell transplant.It all sounds very daunting at the moment.
    Any advice would be helpful.
    Thanks
    Tina

    #98870

    tom
    Participant

    Hi Tina

    Cant offer advice as I have never been on a "Trial" but wish you Luck, I have had SCT in 2009 and will say it has been worth it 🙂

    Love Tom "Onwards and upwards" xxx

    #98871

    eve
    Participant

    Hi Tina
    My husband was on the myeloma X1 trials had 6 cycles of CDT with a few hiccups in between,It is a 3 week cycle of tablets which you will take home with you nurses will go over all the tablets with you,there will be extra tablets to stop you feeling sick plus others.You need to write out a chart or get a dairy from Ellen its a must for keeping up with your tablets at one time Slim was taking 45 tablets in one day, must keep your water in take up as well to flush your kidneys.

    I kept a chart for weight blood pressure and temp. only once a week or if he felt ill,helps to get a patten so you know if things are going wrong.
    Do not be surprised if the Dex makes you hypo take it in the morning.

    I think the main thing with chemo,is you do not know what to expect,so if you are ill with another illness you just think your body is reacting to the chemo,this is not always the case,so make sure you keep the hospital informed and do not hesitate to stand your ground if you feel ill.
    my husband was seen by a doctor,then a few days later I took him to A&E only to be told he was OK and sent home,rushed into hospital 2 days later with septic pneumonia 10 days ITU 12 days on ward,you soon learn to stand up for yourself,when you have a little hiccup.
    Listen to your body.
    Lots people do not have any problems and sail through treatment,even carry on working through it all ,lets hope this will be you,but being forewarned might just help you,Eve

    #98872

    mhnevill
    Participant

    Hi Tina

    I can see that thinking about the Trial is daunting, but at least you know that you will be monitored very, very closely and doses will be adjusted if side effects are too bad.

    All best wishes.

    Mavis x

    #98873

    TinaP
    Participant

    Thanks Eve,
    Do you get a break between cycles? I forgot to ask. There was so much to take in!
    Tina

    #98874

    eve
    Participant

    Hi Tina
    No,no break,if your on intensive pathway,if you have bad side effects they can reduce dose,4 days of dex is very full on.If you have problems please mention them .At least you will only go to hospital for bloods,tablets and Zometa,if you hospital is well organised should be able to do it in 1 trip.

    Try not to worry everything will fall in to place,there are a number of questions you could ask
    one is what type of mm have I got
    which side of trial are you on CDT or CDR
    ask for bloods and results of any scans you will soon learn how to read them
    keeping copies allows you to see any changers,then if you are not happy you can take it up with staff.
    Get books from hospital if not forth coming ring Myeloma uk.
    You will soon pick up the medical jargon.Best Wishers Eve

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