Newly diagnosed - Triple Negative Breast Cancer

Mez_BCNA
Mez_BCNA VictoriaAdministrator, Staff, Member, Moderator Posts: 450
Original post by @MargieD  moved from activity section to 'Newly Diagnosed' discussion thread:


Comments

  • Ausmum2
    Ausmum2 QueenslandMember Posts: 57
    Hey @MargieD
    Welcome to the club no one wants to join. 
    I’m a TNBC grade 3 stage 2B 12+months out. (So finished active treatment). 
    The best ones to advise re “out and about” as you note is your medical team (I had masses of instructions and handouts re avoiding crowds, sick people  etc but also had food instructions re “undercooked and raw foods” etc. I called it “the pregancy diet”). 

    Good luck, immunotherapy “wasn’t offered” for me last year. I, like you, went for a solo walk very early every morning of treatment and I think it helped. I also applied “the coffee cure” (which was coffee with healthy mates at a table in a cafe that knew me - in my local area- that helped to protect my immune system by only letting healthy staff deal with me and my food and keeping me 2metres from others. My mates were also good about making sure not to expose me to them or their children who had/might have been unwell). 

    I found the first month or so that worst as the rollercoaster ride quick and scary, once you get into the “treatment routine” the week took on a regular pattern.  


  • MargieD
    MargieD Member Posts: 4
    Thank you for your response. So far I am feeling ok, just taking it one day at a time!
  • MargieD
    MargieD Member Posts: 4
    Hi All! Ausmum2 I just re read your response and thought I would thank you again! Well I am now nearly 6 weeks into treatments! Every week I have 2 different chemotherapy treatments and every three weeks I also have the Pembrolizumab immunotherapy, plus a needle that I do at home. Every week there are also two tablets to take on the two days after treatment. This Monday I will have reached the halfway mark in my first 12 week cycle. Then there will be 18 more weeks of treatments to go! 
    How am I feeling?? Grateful! I am feeling very grateful for so many things! Firstly that there are people dedicated to researching and having the knowledge to be able to develop new treatments to help with this journey! Also for the support from family and friends. So lucky there!!
    Physically? I am pretty good really! Just taking things one day at a time! My hair has gone on vacation and I have a new collection of beanies and turbans to keep my head warm! I have not been sick or nauseous and my appetite is great and weight is stable! Had a problem with constipation but a Movicol satchel every day has helped with that. I think the anti nausea tablets contribute to that plus they also make my face bright red and warm for two days.
    Getting enough sleep has been a hard. Some nights I only get three hours and none during the day. Doctor has prescribed sleeping tablets and now  I take half a sleeping tablet before bed and am getting a good six hours straight!
    i have had a few well intentioned breast cancer survivors encouraging me to have my breasts removed, and a bit of doubt crept in regarding what I am doing regarding treatment but my doctor has reassured me that the treatment I am having is the best available for me.
    I have booked a few Look Good Feel Good online Zoom classes and had my first meditation class yesterday. It was about understanding emotions and was very helpful.
    So far so good. Hugs and best wishes to everyone.
    MargieD
  • jennyss
    jennyss Western NSWMember Posts: 1,708
    Dear @MargieD,

    to you too from jennyss in Western NSW
  • MargieD
    MargieD Member Posts: 4
    Thank you jennyss. Blessings and good wishes to you as well!
  • Ausmum2
    Ausmum2 QueenslandMember Posts: 57
    Hey @MargieD
    Just slide in and found this. I’m not around so much anymore as I’m gradually going back to work etc. 
    I’m so glad you are doing well. As you say “one day at a time” (and sometimes only one hour or one second) is enough. I did LGFB also (had no idea what to do with makeup without them - even to buy it ha ha ha) and I’ve also had an awesome Pinc and Steel team (as I want my functionality back) who I’m working with now (hydrotherapy is the bomb diggity). I’ve also found Pink Hope amazing for support too (mainly younger and TNBC lassies). 
    Like you from time to time I “wonder” (Eg am I more at risk as no immunotherapy, or should I have had neoadjuvant treatment offered blah blah blah) but I just remind myself to “trust the experts” as they’ve got me this far :-:smile:

    keep giving cancer the old “hard time” lovely and just one teensy step at a time. 

  • Julez1958
    Julez1958 SydneyMember Posts: 696
    Hi @ MargiD
    I found the podcasts on here by Charlotte Tottmann very helpful in the emotional/ psychological “ journey”.
    She is a psychologist specialising in cancer related distress who herself got breast cancer.
    All the best 🌺
  • Locksley
    Locksley Macedon Ranges, VictoriaMember Posts: 851
    @MargieD welcome to the club noone wants to join.   I had a different type of bc than you.  Sounds like you are doing well.  Keep going.
  • MargieD
    MargieD Member Posts: 4
    Thanks everyone! Good to know there is so much kindred support happening! 🥰🥰🥰🥰