Sentinel lymph nodes removed - Chemo & Radiation treatment

4Coco
4Coco Member Posts: 48
I have my first appointment with Oncologist next week and I'm writing down any questions that pop into my hear and seeking useful tips from others who can offer suggestions for what helped during day of treatment and what to have at home to help get through the not so good days please.
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Comments

  • Cath62
    Cath62 Member Posts: 1,266
    Hi @4Coco,

    Chemo tips from me include:
    # drink lots of water a couple days before and after
    # some exercise even on treatment day
    # juice of beetroot, celery, carrot, apple and ginger which is helpful for the liver (chemo drugs are hard on the liver). Have this a couple days either side of treatment 
    # try meditation or mindfulness 
    # ask for help at home 
    # accept help if it is offered
    # take any anti nausea tablets if needed
    # eat healthy but if things taste funny eat what works for you
    # if not using a cold cap shave your head before day 17 after the first chemo as it is distressing to watch it all fall out
    # look after your skin as chemo is drying. I used moogoo which is no chemicals 
    # really take care of your oral hygiene to avoid mouth ulcers. I used floss after every meal and my breast care nurse recommended mouth gargle with salty water after every meal. I religiously did this and never got a mouth ulcers
    # try thinking that chemo is a golden light that only treats the cancer cells and doesn't impact anything else.
    # speak up to your oncologist or breast care nurse about any adverse reactions 
    # bring a mobile or book or something to occupy you during chemo sessions 
    # seek counselling if needed
    # be kind to yourself, rest as you need and don't even try to be superwoman 

    For radium 
    # drink lots water and eat good healthy food 
    # exercise and meditation or mindfulness 
    # have soft fabric even a boob tube or a camisole if you can't wear a bra
    #use recommended moisturiser tge breast care nurse suggests 
    # ask for mepilex. It is like a second skin on the radiated area and seriously helps reduce redness 
    # speak up to your medical team if issues
    #rest
    #let others help you at home if they offer 

    These things really helped me. We are all different so there may be others who have advice too. Best wishes to you x
  • Afraser
    Afraser Member Posts: 4,352
    Hi @4Coco

    I didn’t do much that was special. I did gargle regularly with salt water to avoid mouth ulcers. My chemo
    nurse said it was better to do it twice daily always, than try for four times a day and fail. So twice daily it was and no ulcers. 

    I didn’t have nausea and stopped taking any anti-nausea medication after my first four A/C infusions. Promised my oncologist I wouldn’t blame him if I was sick and I wasn’t! But suffering unnecessarily is mad - if you need it, take it.

    I didn’t shave my head but had my hair cut very, very short when I started chemo and wore a cotton cap in bed. The cap was soothing on my head, which felt like it was sunburned for a week or two, and also caught lots of small hairs that I could empty out next morning! Most people find losing hanks of hair distressing, so best avoided. 

    I did go to a counsellor - not for long but it was immensely useful. I wasn’t depressed about cancer or my treatment, but with a few possibly lifelong side effects, I wasn’t sure - should I continue as I was (I worked full time through treatment), should I be ‘taking things easy’ or what? She guided me through my ‘normal’ life - cancer is an almost perfect time to consider how much of your normal life you want to rush back to! Most of mine I did, but there was room for improvement and I’ve been improving things ever since. Stayed working, took on a new challenge, studied more. 

    Everyone finds their own pace for treatment (didn’t have radiation so can’t comment on that) and finding what’s right for you is the not very secret secret! Best wishes. 
  • 4Coco
    4Coco Member Posts: 48
    Hi @Cath62  Many thanks for all your wonderful suggestions.   Will definitely try very hard with the Golden Light thinking - I understand that one of the drugs is known as the red devil.  Nausea and sickness are my main worry - had a horrible time during meno with those two.  Smiles to you*!*
  • 4Coco
    4Coco Member Posts: 48
    Hi @Afraser   Thank you for your tips and shared experiences.  Good to hear you didn't suffer with nausea  -  I've got everything crossed I follow in your footsteps.  I think the hair suggestions both you and @Cath62 are ones that I've already ticked in my brain to do sooner rather than have to deal with daily loss on the pillow each morning - that would be too distressing I agree.   Yes I feel like I'm getting closer to a cross roads point as to what do I want to do "after treatment."  One step at a time for now.   Smiles to you*!*
  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 851
    HI @4Coco, while I cannot top the practical advice of your fellow members lived experience above. I thought I would share the My Journey article 'Questions to ask when diagnosed with early breast cancer' ; these are suggested questions that others have told us are helpful to ask https://myjourney.org.au/article/2090
  • Keeping_positive1
    Keeping_positive1 Member Posts: 555
    I kept 2 litres of water in a jug on my kitchen bench as suggested to remind me to drink it throughout the day.  I also did up the level just before my chemo on that day so to have extra hydration.  Another thing a nurse friend who had just gone through chemo suggested was to use Biotene mouth wash, and QV wash instead of soap.  I also bought kenolog from the chemist in case I got any ulcers, but I didn't get any, one plus!  It was suggest to use a soft toothbrush, like a childrens one, so I used that also, and I still do to still day, don't want to remove any more enamel from my aging teeth.  

    Like @Afraser I had anti nausea med throughout AC, that is the 4 sessions three weeks apart, I was given a steroid tablet and by memory I think I had them for three days in a row after the chemo day.  Then on the 12 weekly paclitaxol I didn't require any steroids (anti nausea meds).  

    For myself I wasn't able to work through perhaps mainly because of the nature of my job, and I never returned to work and just formally retired in May this year.. yippee.  Some do find their identity is wrapped in their work, for me it wasn't the case, although I do miss the clients, because I loved my job.

    Another thing I found was because I am on my own I made sure I had everything organised and at least 3 days of meals in the freezer, and on the day of chemo my support friend who drove me there would stop so I could pick up a salad for an easy meal that evening.  I didn't have any help in the house, and I managed mainly because I am a highly organised person and used to doing everything on my own.  But of course, if I had fell down sick I would have wanted and asked for help.  

    Not to scare you, but I had a backpack by the front door in case I got a temperature and needed to rush to hospital, that never happened, thankfully.  Good to be prepared in case, and I had told family if it happened in the middle of the night I would inform them in the morning, nothing they could do for me in the middle of the night.  

    Keep a thermometer handy, but they will tell you that at your chemo education session if you are going through the public system.  You will get through, as did many of us, and we hope we haven't inundated you with information.  Best wishes and keep us posted.  Take care. xx

  • 4Coco
    4Coco Member Posts: 48
    Hi and thank you @Keeping_positive1 for your suggestions and no I'm not feeling inundated with info provided from group members.  It's not quite the same as getting a heads up for a trip of a lifetime but if you have things in place and a to do/must have list then fingers crossed "this trip" will be as good and as stressless as it possibly can be.  Congratulations on the new you, enjoying your retirement life.

  • Mazbeth
    Mazbeth Member Posts: 199
    Hi @4Coco there is lots of great advice here - I know some things that were said to me 2 years ago were so incredibly helpful.
    Just a couple of things to add - 
    * fruit tingles are great for freshening up your mouth - it must be the bicarbonate soda in them. I munched my way through many packets.
    * do whatever feels ok - strolls, having a smoothie at 2am, lying on the couch - just be kind to yourself.
    * don’t wait to see if nausea passes - take the meds. I never was physically ill and I put that down to taking the meds and not letting any feelings of swirling in my stomach escalate.
    * I gave over to the process. Like @Afraser I did a bit of counselling at the start - incredibly helpful and really got my head in the game. 
    * as @Cath62 said, I imagined the chemo as the liquid gold I needed to knock out anything rogue - it really changed my perception of what was happening. I then got on with the business of treatment. Thankfully there is chemotherapy and it is now individually targeted for the best results. Even in the 18 months since I finished treatment, things have changed.
    * I bought a little bottle of Biotene spray (mouth moisturiser) and put it in my hand bag if my mouth was dry.
    * Tell your treating team if you experience any side effects as they will definitely be able to help, but ‘they don’t know if they don’t know.’
    Take care 🌸

  • 4Coco
    4Coco Member Posts: 48
    Hi @Mazbeth  Thank you for your suggestions - fruit tingles and biotene seem to be the little stars in keeping mouth fresh.  Yes agree - treating team don't know if they don't know.  And yes I've started seeing @Cath62 "liquid gold treatment"  the thing to focus on.

  • Abbydog
    Abbydog Member Posts: 479
    There has been some very good tips here above.
    I'm here to say, not everyone gets nausea and vomiting with Chemo.
    I know that I was one of the lucky ones.
    I took one anti-emetic the first time I left the house, just in case.
    I had no nausea, and did not take any anti-emetics after that. 
    I did the Mastectomy, Chemo  EC x4 and Taxol x12, R/T x25
    It is not like the movies. Even if you are unlucky and do get the N &V, you will be given the drugs you need.
    Take them, and report if they do not work, to your Onc or Chemo nurses.
    I did have other side effects, but with the advice given, they were all manageable.
    I did not lose my hair. I would have with the Chemo I had.
    But I used the Cold Cap very successfully. If it is available to you give it a go.
    .I recommend Mepitel during R/T, I had no burns.
    Ask me any questions, if I can help you. You can do it via private message.
    All the best.



  • 4Coco
    4Coco Member Posts: 48
    Thank you @Abbydog  It's great to hear that not everyone has the N&V issues  -  I'm hoping that will be so for me too ... or that the drugs sort things out asap.   I've read mixed experiences here regarding the Cold Cap - I get migraines from time to time and unsure if the Cold Cap treatment would be a trigger for them to occur.     Did you use Mepitel  during the R/T sessions or immediately after each session?
  • noosa_blue150
    noosa_blue150 Member Posts: 211
    Mepitel is applied first session of radiotherapy and usually remains on for the following weeks of treatment . Nursing staff may fix up edges if they lift but generally it’s not removed until,treatment finished . One needs to treat carefully ( don’t get area soaking wet so no swimming, try to,avoid area when showering , don’t get hot amd sweaty ) 
    Great product , reminded me of extra thick gladwrap adhering to skin. I had a lumpectomy and most of,it stuck well to left boob, only ended up,with slight radiation rash on front chest wall NOT a burn .
  • Abbydog
    Abbydog Member Posts: 479
    Sorry for my delay. As said by noosa_blue150, Mepitel is on 27/7.
    It protects the skin from dehydration and friction.
    I had no burning at all, with 25 sessions.
    The nurses patched it up as necessary.
    I would have had it on for approx 1 week after R/T completed, when it was quite loose.
    I recommend it, but not all R/T places use it.
    I had it in a Public Hospital, in SA.
  • 4Coco
    4Coco Member Posts: 48
    Hi @noosa_blue150  Thank you for your positive feedback on using Mepitel its always great to hear what is out there to help with the treatment  -  a rash sounds much better than a burn.
  • 4Coco
    4Coco Member Posts: 48
    Hi @Abbydog  no sorry needed :)   Thank you for your additional info  - I will definitely check ahead of my RT treatment to see if it is available/used by them... if not will track some down and take with me to 1st session.