Triple Positive Breast Cancer

Ned01
Ned01 Member Posts: 14 ✭
in Newly diagnosed
Hi there first time on here, not really into social media but was wondering if there are others, which I am sure there are who have the same diagnosis as me, would be nice to talk to someone who is going through the same as me, I was diagnosed November last year, done 4 cycles of chemo, then onto weekly treatments, just had surgery and waiting for results, it has been a testing time
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Comments

  • June1952
    June1952 Member Posts: 1,935 ✭
    Hi there @Ned01, I kind of remember one member with that diagnosis - @AllyJay are you the person I am thinking of ?
  • arpie
    arpie Member Posts: 8,198 ✭
    Hi @Ned01 - sorry to see that you've joined our exclusive 'club' .... you can ask questions on any part of your treatment & those who are TNBC will be able to chat with you, for support xx

    I hope you are recovering well from your surgery.  All the best for your results x

    Feel free to join the Private Group for TNBC - it is totally private - only those who've signed up to it can see/read any of the posts ..... Jump on here & click 'join' ....
    https://onlinenetwork.bcna.org.au/group/30-triple-negative-breast-cancer-tnbc

    Also check out this thread that shows a lot of other areas on the forum that you might like to join in on - showing off our gardens, our pets, art & craft & even having a laugh (let's face it, we all need a laugh!) 

    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

    Take care & all the best with your ongoing treatment xx
  • Ned01
    Ned01 Member Posts: 14 ✭
    Thanks for the info arple
  • WhiteLight
    WhiteLight Member Posts: 38 ✭
    Hi @Ned01,

    Sorry to hear of your diagnosis.
    Yes the waiting inbetween is the worst.
    Wishing all the best for the best possible outcome.
    Hugs
  • arpie
    arpie Member Posts: 8,198 ✭
    oooops ... I am so sorry @Ned01 ....

    The group I suggested you join is actually the Triple NEGATIVE group, as we don't have a Triple Positive Group as yet - but as we have quite a few members with that genre ... perhaps it is time for a TPBC group - @Mez_BCNA could look into a private group for the Triple Positive members, as it is a very specialised area xx 

    take care xx

    If you click on this link, it will take you to many posts re Triple Positive BC .... 
    https://onlinenetwork.bcna.org.au/search?domain=all_content&query="triple positive breast cancer"&sort=-dateInserted&scope=site&source=community


  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 1,144 ✭
    Let's start the conversation @arpie - I will get a discussion going next week to gauge the response of members and whether a group is in demand 
  • Ned01
    Ned01 Member Posts: 14 ✭
    I would really appreciate the group for triple positive breast cancer as I am one of those, just to communicate with someone who is going through this now would be great
  • Tri
    Tri Member Posts: 225 ✭
    edited July 19
    Hi @Ned01 I am also triple positive, diagnosed in Feb 2023 and I just completed the treatment in April 2024. 
    I do hope you are doing well- waiting is super challenging 🌻.
     I would be happy to have a chat and share my experience if it helps. 
    It can feel a bit of a long haul and I found myself making a few strategies and milestones to break up the fourteen month timeline. 
    @Mez_BCNA a triple positive group would have been helpful to me - being positive for HER2 really shaped my treatment and I only met one other person who was triple positive (through my work circles) 
     I have found the women in this network to be so generous and considerate of everyone’s unique diagnosis, treatment and response. 
    @Ned01 more than happy to field any questions ☺️

  • Ned01
    Ned01 Member Posts: 14 ✭
    Hi Tri, thanks for posting.  It certainly is a challenging time and I am glad you have made it through, it would be nice to hear your experience. I have had my initial surgery about 3 weeks ago and need to have another next week for more lymph node removal as they need to know they have it all, once this is done I move onto my next lot of treatment in August. I consider myself pretty lucky so far as side effects have only been bowel issues, loss of taste and my hair falling out.  I do worry about all of the other things that these treatments can cause.  I had pretty much just retired when diagnosed but am thankful to be at home, I am always emotional and try to keep a lid on it don't like other to see how I am feeling. What treatment did you have and what were your experiences with them?
  • Tri
    Tri Member Posts: 225 ✭
    Hi @Ned01 it sounds like you’ve held up incredibly well so far. 
    My cancer was a 38mm lump in the left breast. I didn’t have node involvement. 
    My treatment was pre-surgery chemotherapy, 6 doses of Herceptin,Perjeta,DoceTaxel and Carboplatin every 3 weeks.
    Then Surgery (lumpectomy) a month’s break then15 radiotherapy sessions, then 11 sessions (once every 3 weeks) of a chemotherapy and immunotherapy drug called Kadcyla. I was also started on the oestrogen inhibiting drug, Letrozole, once I was through radiation therapy, and vitamin D.
    I had Kadcyla because my pathology after surgery came back with a few cancer cells, so the oncologist recommended chemotherapy and immunotherapy. 
    My initial treatment was quite a tough experience- each visit generated a different side effect (I used to joke it was like a ‘choose your own adventure’) but we got there in the end!
    How have you found the change in the cadence of your work life? I also stepped back from my work immediately before diagnosis but I ended up doing a day a week. I found that was helpful. 
    Not sure if you experienced this but I didn’t expect the fatigue I encountered and that’s what I struggled most with accepting. Unfortunately I caught COVID too so it might have been a factor.
     I had been an extrovert and energised by engaging with people so I was also surprised to discover a limit to my social stamina, and that some encounters with some people were more taxing on my energy and used more brain power to process than others. I set a daily energy ‘budget’ - if I did a particular thing that was quite draining I would cap the day and defer the next activity or social engagement to the next day(s). 
    Coming into summer and getting small doses of sunshine was a great milestone. I looked forward to getting into the sea again once my radiation therapy settled down. I signed up for oncology massage treatments and oncology physiotherapy during the final run home. 
    To me the triple positive treatment regime of fourteen or fifteen months duration felt epic so I needed to motivate myself with 
    visualisation and positive thinking. 
    Having friends, family and colleagues- kindness and support made  a huge difference. 
    Do you know yet how your plan will look after this forthcoming surgery? I really hope it goes well🌻

  • Ned01
    Ned01 Member Posts: 14 ✭
    Thanks for your reply Tri, this has been so helpful. 

    I had a 20mm lump and one lymph node with cancer cells. I started on 4 cycles of chemo AC (doxorubicin & cyclophosphamide) and got through this ok of course my hair fell out had bad constipation and of course loss my taste. I was lucky to avoid being sick. Then I started Paclitaxel & Trastuzumab (13 cycles), I had severe allergic reaction to the paclitaxel after the second treatment plus another on the third so it was changed to nab-paclitaxel (4cycles) which I got through.  

    I too had the tiredness to the extent of sheer exhaustion and lack of motivation, plus the emotions are still hard to control.  I am a needle phobic which really doesn't help any. 

    Being at home has allowed me to avoid people as always scared of catching colds, covid etc. I always check with anyone before catching up to see if they are well or not.  I feel people have avoided me since my diagnoses, I just think they do not know what to say to you and I can understand this, I also wasn't in a great place in the beginning found it hard to communicate, not so bad now. I am a bit of a home bod like my own company but you do need to be able to converse with others who are going through what you are.  I started to write down my feelings and I feel this has helped me.

    I was an emotional wreck by the time surgery came around but felt good once over only the find out I am going back down that path next week.  I get a two week break then on to new treatment trastuzumab emtansine which is 14 cycles. I am not sure when radiation treatment starts, I also have to go on tablets Anastrozole at some stage.  I am sure there will be new side effects to deal with hopefully I'll keep my hair as it is now growing back, I wear hats so it is not a big deal really but it would be nice.

    As I had said I had retired from work, my job was extremely stressful especially as we had just come out of 3 years of covid, I managed an accommodation facility where self isolating was not possible, took me 6 months to get rid of the stress then breast cancer happened changed everything, and it has been quite taxing on myself and my husband, we have each other and together we will come out of this. I just want to get back to some kind of normal, just not having to worry about this stuff all the time.

    So thank you for touching base with me, I really needed this, I am glad you have reached where you are today and I wish you all the best moving forward, that is all we can do move forward.  You have a wonderful day now.
  • Tri
    Tri Member Posts: 225 ✭
    Hi @Ned01
    I appreciate you describing your experience. Your reserve tank after Covid must have been so depleted. It is a fact that the repeated and evolving challenges of Covid was unrelenting! Your role sounds like it held a lot of responsibility and it cannot have been easy. 
    Good on you for journaling. 
    It feels like your medical treatment has been not without challenges, so it’s just fantastic that you have got through the first rounds with such an unflappable outlook. 
    I didn’t know anyone who’d had traztuzumab emtazine (aka Kadcyla) and I was worried it would be the same as the pre—surgery treatment and would feel a bit knocked by it. But when I had the Kadcyla my hair, eyebrows and fingernails grew back. I didn’t have to have rehydration. I got some appetite back and tastebuds resumed something close to normal service! It was also only an hour on the drip instead of 3 hours. 
    I was already feeling tired throughout radiation therapy before I had Kadcyla. 
    So I ‘gave myself permission’ to rest for up to an hour every day until my last treatment. An hour’s rest meant that I wouldn’t feel like I had jet lag by 5 pm. I gradually built up my balance, and increased my exercise and regular short walking. I still curtailed my socialising. 
    So basically 3 - 4 weeks after the last Kadcyla treatment my energy improved and lifted.
    Things looked like they would start to get back to a level of normality. However it would be fair to say it hasn’t been as quick as some people would like. Others are eager to have their pre cancer version of us back in their lives. 
    I have been lucky to have some women in my circles who have all been on the same path, as it’s helped me out to see what post-treatment can look like. But they weren’t triple positive so good on you for putting up the post about being triple positive! Sending you hugs and big healing vibes for your surgery next week. 
  • Ned01
    Ned01 Member Posts: 14 ✭
    Hi Tri, thanks for sharing it has certainly helped I am sure I will have other questions moving forward, on that how did you go whilst have Kadcyla and radiation, did you feel tired all the time, my motivation levels are low at present however I try and do things when I can I miss my garden so I am hoping I will have the energy to do more things than what I do now.  I do feel a little guilty that I don't do what I use to.

    As for surgery next week I know its the right thing to do but I am still recovering from the last round, due to the under arm surgery I still have a sore arm, I think its nerve damage, it is getting better but I am going to have to go through it all over again.  Anyhow thanks for your kind wishes, you stay well and have a good day.
  • arpie
    arpie Member Posts: 8,198 ✭
    Wishing you all the best for your surgery next week @Ned01 ... the nerves often take a while to 'settle' as they reconnect - so the odd sharp/weird/stabbing pain sadly, may be the norm for some time, even after the next surgery. 

    take care, be kind to yourself & put yourself first .... rest up if/when you need to & delegate all chores to family and/or friends xx

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