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Getting ready for Chemo, any advice?

Sabina33Sabina33 Member Posts: 6
edited April 14 in General discussion
Hi beautiful women, I’m new here, I’m a 33yo mum with 3 kids, recently diagnosed with hormone +, stage 3, grade 3. Had a double mastectomy and lymph nodes removed on the 30/3, going to see the oncologist next week and start Chemo. Would love some advice on preparing for this, recovery from surgery has been hard but chemo is more daunting to me... 
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  • jennyssjennyss Western NSWMember Posts: 805
    Dear @Sabina 33, My chemo is 2 1/2 years behind me. I'm sure lots of network members will add to my thoughts. I think your oncologist will work out a chemo 'recipe' for you, based on your results. The main things I learnt are that everybody reacts differently to chemo, but there are patterns eg when you are likely to lose your hair, suffer fatigue  lol. But there are lots of great tips for treating side effects and looking after yourself that will help. And besides this great network there is a lot of online, phone and written information available when questions arise.
  • AfraserAfraser MelbourneMember Posts: 2,961
    Hi @Sabina33
    Welcome! Chemo is always a daunting thought but as @jennyss says, reactions can be so widely different that it’s hard to know what any one individual will experience. Your oncologist will outline what treatment is recommended. Mine gave me a sheet of information on each therapy - this was very helpful, particularly to refer back to later. Remember that lists of possible side effects are just that - a list of what’s been experienced by a large number of people. You won’t get all of them! Losing your hair is likely so have some thought whether you want try cold cap. It too varies in effectiveness. 
    Many patients suffer fatigue, but not all - I had none and worked throughout. Similarly nausea - drugs may help a lot so don’t suffer in silence but again, I had none. Most people start to recognise a pattern of good and not so good days and can plan accordingly. Remember chemo is finite, take one day at a time and count down the number of treatments! Best wishes. 
  • Shellshocked2018_Shellshocked2018_ Fleurieu Peninsula , SAMember Posts: 260
    Hi Sabina33,
    I finished chemo last year.
    Everyone reacts differently to chemotherapy, as everyone’s doses aren’t the same, I had dense dose AC every 2 weeks for 8 weeks, then 12 weekly pactlitaxel. I had quite a few side affects, but by  telling you this you have a lot of support with your oncologist, and your oncologist nurse, to try and get the nest dose right.
    Dont be afraid to use the 24 hr hotline number you will be given if you’re not feeling well, as they are there to advise you and help you through, just remember you are never alone.
    Be very up front with your oncologist, as they are there to try and make chemotherapy tolerable for you.
    I had my head shaved, to make hair loss less distressing, some people had a cold cap but that wasn’t available to me. So I went onto Ebay and bought some nice head scarves.
    Planning Ahead....
    Cook and freeze some meals , soups are really good as well.
    Have hospital grade Sustagen on stand by just in case you don’t feel like eating, at least you can drink some nutrients.
    You may get a metallic taste in your mouth, so have some cordial in the cupboard ready as you will need to drink around 3 litres a day of fluids.
    You may get constipated so have some coloxyl with senna on hand, I took 2 every night and had no constipation issues.
    Take your temperature on a regular basis.
    Have an overnight bag packed just incase you have hospital visits, with all the essentials, ( as I found out the hard way when husband packed one for me lol...)
    If you have school age children have a plan B in place for school drop off and pick up.
    Let people help if they offer.
    You can even have a daily schedule printed to help the family in regards what needs to be done, eg Feeding animals, washing ( how to use machine) etc.

    You will get through this , we are here for you with any questions you might have.
    Stay positive, listen to your body and rest when it tells you to.
    Try and stay as active as you can during chemo, short walks around the yard, keep,hydrated, you will work out when you best and bad days are going to be.

    We are here for you , sending hugs xx
  • ddonddon Member Posts: 208
    I am almost finished chemo and everyone has given great advice - just want to say that you need to be mentally prepared for needing help at times because you have 3 kids. I am sure that you are used to running your household and taking care of your children and all those indispensable things that mums do. Chemo can be very tough for a few days of each cycle if you’re on dose dense AC - hard to put one foot in front of the other. Ask for help and accept anything that is offered. I had beautiful ladies from my church bringing some meals each treatment,  my cousin would pick me up, sit with me and drop me home after and bring the meal for that night. My sister did washing and ironing. I felt so loved and that made it all so much easier. I am very independent and with 4 kids I think I am pretty capable, but I needed help or our household would have crashed. 
    It’s doable, it will pass but in the meantime help is good. 
    Also - I am so sorry you are going through this so young. At any age it’s awful but I always feel so sad that this has to be endured in ladies so young. Take care of you xx
  • Sabina33Sabina33 Member Posts: 6
    Thankyou all for your insights, I’m frightened of starting but also want to dive in and do it now! as you all know the waiting for each step, each result and plan is hard.  Not going in blind is helpful, have been reading some of the other discussions and it’s good to have some understanding of it all. I read all the medical stuff but it’s the advice on practical stuff that you all offer that’s great. So, I have purchased a few head scarfs and Beenies and am ready to let my 7yo girl shave my head, will be doing some soup cook ups this week and will definitely keep a bag packed because my Husband choice would be something 😂
    I am also practicing the acceptance of help and will take up some offers of meals from friends for around my treatments,  thanks for being here and sharing x  
  • TinksTinks AdelaideMember Posts: 229
    Hello @Sabina33!  I finished chemo a few weeks ago. I had EC it’s like AC, then paclitaxel. I found that by the end the first cycle of EC, I had a “pattern” of fatigue days and better days that stayed pretty much the same for all four cycles. That helped a lot with planning. 

    Some side effects were not that constant such as nausea, constipation or diarrhoea and I took it one day at a time and adjusted my meds as required. 

    I drank like a fish which took some getting used to. It’s worth it. Any fluids like water, cordial, teas, chai and infusions helped to mix it up a bit. Good luck! Lots of hugs Tinks xx
  • ddonddon Member Posts: 208
    I felt the same - I was so stressed ‘waiting’ for it to start that I just wanted to get on with it. I think it’s easier mentally once you get into the swing of it. You will be fine - just one treatment at a time, and one day at a time. 
  • Katy_SodapopKaty_Sodapop Member Posts: 46
    Sabina33 said:
    Hi beautiful women, I’m new here, I’m a 33yo mum with 3 kids, recently diagnosed with hormone +, stage 3, grade 3. Had a double mastectomy and lymph nodes removed on the 30/3, going to see the oncologist next week and start Chemo. Would love some advice on preparing for this, recovery from surgery has been hard but chemo is more daunting to me... 
    Hi Sabina, 

    Sorry you have had to join this club. I was 34 when diagnosed and pretty similar stage and grade....that's over 6 years ago now! Chemo was definitely the hardest for me out of all the treatments. My tips are....
    Take your anti nausea meds 
    Rest Rest Rest even if you're feeling on top of the world - it's the steroids that are lying to you
    Paint your nails & toenails a dark colour - I honestly believe in this as I painted my nails and forgot to paint my toenails and a month after finishing chemo all my toenails fell off
    Drink tonnes of fluids to flush the chemo out after you've had it
    Don't stress if you don't eat or drink as healthy as you thought you might (I thought this way)....eat and drink what makes you happy, keeps you hydrated, energised etc I lived on Savoy biscuits 24 hours of the day and always ate a bucket of hot chips when I was having my chemo

    Have you thought about cutting your hair shorter? 

    Absolutely accept ALL of the help! Sometimes it's hard but a lot of your friends and family might not know what to say but they can show you by the way they help 

    Goodluck my friend  :)

  • Shellshocked2018_Shellshocked2018_ Fleurieu Peninsula , SAMember Posts: 260
    Hi Sabina33,
    I know it sounds weird , driving to my very first chemotherapy session I wasn’t nervous at all, was singing in the car to some favourite music, my husband was driving me, he sort of looked at me are you ok lol.....
    Something no one has mentioned, have you thought about having a port?
    The reason I ask is that I didn’t, and now if I need blood taken, it’s a nightmare finding my veins, as I can only use one arm due to having all lymph nodes removed from surgery side.
    I had a Pic line put in after my third treatment, but that only lasted in my arm for 3 weeks as I ended up with blood clots in my arm, so it was removed, other ladies that had a Port put in had no issues. So that’s something I would ask your oncologist.
    Maybe it was just my bad luck, but having a Pic line there was always a risk of blood clots, but it doesn’t happen to everyone. 
    I wish I had a port line put in, Would be a good idea to do some research.
    Don't be afraid of chemotherapy, the nurses are so lovely and they will help,you through it all.
    Take a good book to read during chemotherapy, I had access to a tv to watch, listen to,your favourite music, the last couple of dose dense AC I slept through the whole thing.
    If husband or someone else sits with you whilst having treatment, get them to take their own snacks or lunch depending on what time you have your treatment, and if you prefer to take your own snacks do so.
    Take plenty of fluids with you during chemotherapy.
    Be positive.
    You have got this. 
    You are a warrior.

    What a great idea with your daughter shaving your hair off. After having my head shaved I went home and sprayed some pink hairspray in my hair.

    Big hugs xx


  • PV123PV123 Member Posts: 137
    Waiting to start chemo was the hardest part for me.  I did have a wide range of side effects but they were mostly manageable.  The most problematic side effect for me was having mouth sores.  I would rinse every day with salt or use biotene. 

    The nurse or oncologist will give you a sheet listing possible side effects. It might be a good idea to ask the Onco or the nurse about the most likely side effects and how you should deal with those.

    Good luck with your treatment.
  • Sabina33Sabina33 Member Posts: 6
    Thanks for taking the time to share, I had no idea about nails falling off or the mouth sores and it great just to know these things before it’s all happening. Will definitely find some good books! See the oncologist Wednesday,  will be asking about getting a port or pic
    Love to you all  xxx 
  • Fiona2Fiona2 Member Posts: 69
    Hi Sabina,  I finished chemo about 2 and a half years ago.  I had a course of 4 FEC treatments over twelve weeks then followed by 12 taxol treatments, along with herceptin and perjeta.  It was long and gruelling but eventually, almost unbelievably, you finally get there.  I had a port in and would definitely recommend this as the endless jabs for blood and lines does not get easier over time.  I did the head freezing initially during the FEC but then stopped because my hair all fell out anyway.  However, it started to come back during the weekly taxol, so the nurses urged me to give it another go.  Gotta say I hated it, particularly as my hospital also gave me frozen mittens and my well meaning sister brought in frozen eye pads to help preserve my eyebrows.  I landed on the idea of taking along some of the sedatives that my oncologist had given me early in my treatment and found having taken them, that I could doze off for a couple of hours which was brilliant.
    My main recommendation would be to try to keep exercising during the chemo.  Initially, I felt I could hardly get off the couch but once I got going, it really helped me to feel better and like i was human again.  Walking in the parks was beautiful but I particularly came to love my bicycle.  I'd read that it was good to exercise on the day of chemo to get your circulation and metabolism all activated and ready to maximally soak up the chemo so I'd try to fit in a 30-45 minute ride before going to the hospital.  As my chemo was neoadjuvant (before surgery), I was able to monitor its effects upon my tumour and at the end of the first three months, the tumour was no longer palpable which was amazing and by the end of the six months the MRI was normal.  My treatment was fantastic but I definitely think that the exercise played a big part.  It will feel like a very long haul at the time but hang in there and hopefully before long it will all be in your rear vision mirror.  Fiona x
  • poodlejulespoodlejules Member Posts: 346
    Hi @Sabina33, some great tips here as always , and so sorry to hear of your diagnosis.
    I had a 12 week course of paclitaxel also known as Taxol which can give you neuropathy (numbness, nerve damage) in your hands and feet so I stuck my hands and feet in ice during treatment, also helped with keeping my nails. There's a whole thread on here,with photos, search 'ice therapy". Might be hard to achieve if you don't have a helper going to chemo with you but I hope you can take someone with you.
    Take all the help you are offered, exercise and rest when your body tells you too.And what is about hot chips?? I also had cravings for them @Katy_Sodapop :) I convinced myself the salt on them was good for my mouth !
    Best wishes and take care x

  • Sabina33Sabina33 Member Posts: 6
    Thanks Fiona2, I will definitely try to walk everyday, thanks for the motivation, lovely to hear you chemo was worth it all x 

    poodlejules I am having 12 weeks of Taxol after 4 doses of AC, will definitely look into the ice, thanks for your advise glad you had success with your nails, what a  journey! 

    lol hot chips are the best comfort food x 
  • Fiona2Fiona2 Member Posts: 69
    Wishing you all the best Sabina and sending you loving vibes for a great outcome.  I remember that feeling of just wanting to get it started so as to be able to focus forward. Your little girl looks beautiful and I hope it will not be too scary for her.  Don't forget to soak up all of the love and support offered to you as it will help you through the tough moments. xx
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