Newbie

submarine
submarine Member Posts: 14
edited October 2016 in General discussion
Hello everyone,
I was diagnosed a couple of months ago (triple negative grade 3 stage 2), I am 32, I have a 2 year old and a 5 month old. I have had a lumpectomy and 3 AC chemo so far and the side effects are starting to really hit me and I thought it'd be nice to be able to discuss it all with people who understand what I am going through! 
I have never been part of a forum before so I hope this is a good start! :smile:
«1

Comments

  • Hopes_and_Dreams
    Hopes_and_Dreams Member Posts: 760
    Hi Submarine, welcome!  So sorry you have to join us but you will find a lot of support, kindness and information here.  You are so young and really have your hands full with your 2 little ones but I am sure they are helping get you through this.  You will be sadly surprised by how many young women are in this network.  I can't help you with talking about your chemo and side effects as I was fortunate enough not to need further treatment following my mastectomy in August.  But I did want to say hello and hope your treatment goes well - there will be other ladies here who will share their experiences with you.  This was my first forum too and it was such a great decision to join.  My husband, family and friends have been wonderful but I have found it so helpful being able to share and learn from all the wonderful women who truly understand what we are going through.   Wishing you all the best Submarine and make sure you ask lots of questions, we are all here to support you.  Jane x
  • Nadi
    Nadi Member Posts: 619
    Hi Submarine. So sorry to hear about your diagnosis. This a great place to get information about treatment from others who have gone through or are going through what you are experiencing. We are all so different but unfortunately some people have tougher times with chemo than others. Is there one particular chemo side effect that is worse than the others? Do you have to have radiation? I had a lumpectomy, 4 rounds of TC chemo, 30 sessions of radiation and 17 rounds of Herceptin. I only have 2 more herceptins to go and then I would have had over 12 months of treatment. Having young kids also presents a unique set of challenges. I have 3 boys but they are much older. Ask any questions you want and I am sure someone on here will have an answer for you. It's also good to let your oncology team know about ALL side effects. They are so used to treating these that they may have some really good tips or other drugs to help you as well. I know how overwhelming treatment can be so if you ever need to vent come on here as well. We are all here to support you. 

    Sending hugs, Nadine
  • Jess_BCNA
    Jess_BCNA Member Posts: 475
    Hi there @submarine - just jumping in to also welcome you to the online network - if you need any help making your way around just let us know, as Nadi said, we are all here to support you - jess x
  • Pinkkittykat
    Pinkkittykat Member Posts: 37
    Hi Submarine 
    welcome to the website, I know you must be feeling overwhelmed by everything, I like you was diagnosed in April this year stage 2 grade 3 triple negative, it has been a roller coaster ride to say the least, I had a lumpectomy and 4 rounds of AC chemo followed by 12 treatments of taxol (I only completed 9 due to side effects), and I am about to start radiation.  I was floored by the chemo, I was doing chemo every 3 weeks, the metallic taste was constant, the tiredness was ever present, and of course the nausea, I was sleep deprived as well at the beginning. Mentally I was spent, especially when I was left on my own, hubby & sons would go off to work and I would spiral into depression, I found I had too much time on my hands to think. I'd found pottering around in the garden or watching my favourite movies helped me. I have also joined the YMCA Encore program and this has been a welcome relief for me, the program goes for 8 week and its for breast cancer patients, I recommend it. I was ok about loosing my hair, eyelashes & brows I knew they were going, but now just want to get back to some normality. Make sure you ask for support whether it is family or friends, having such a young family will be exhausting at the moment for you, and let your oncology team know your side effects, but mostly open up and talk as much as you want to any of us here, everyone's journey is different but we are all in this together, take care and sending you hugs, Sophie
  • submarine
    submarine Member Posts: 14
    Thank you so much for your messages, they got me teary!! 
    @Pinkkittykat my treatment plan is the same as yours so it's great to have someone who has gone through it too.
    Sending hugs and love back to you all,
    Marine
  • socoda
    socoda Member Posts: 1,767
    Hi Submarine, I too had never been part of a forum. But what a forum it is!!! While our surgeries and treatments are different we all share our common bond, and understand the fears and anxiety that you are facing.Just know that we are here to support and back you up as much as we possibly can. Wishing you all the best. Xx Cath
  • Glemmis
    Glemmis Member Posts: 343
    Hi Submarine, I had a mastectomy & 12 lump nodes removed estrogen positive with lymphovascular spread. I had my 3rd AC yesterday & then will have 12 Taxol & radiotherapy. I have managed to work 3 days a week so far & only started to feel a bit tired this week but haven't slept well for a long time. I am also exercising a couple of times per week & doing Encore program. i have had quite bad reflux so have been told to take Nexium but nothing seems to fix the metallic taste. It seems to be worse the first week. Only 1 more to go & then it will get easier I am told! Take care
  • ccasper
    ccasper Dragonfly Posts: 190
    Hi @submarine. Sorry to hear about your diagnosis. Sounds similar to me. 

    i am also a youngen on here. 30 with a 15 month old little boy and also triple negative.

    such a shock but I am so thankful for my son. He is helping me get through everything. I have had 4 x AC and am having carboplatin and taxol.  I am 3 of 12 into my regime. I will have surgery next year after chemo. 

    Anything you want to ask, more than happy to help! X
  • Ro10
    Ro10 Member Posts: 59
    Welcome @submarine and sorry you have had to join us. I was also diagnosed a few months ago and am 34 with a 15 month old daughter. I have had a lumpectomy and am having 4 rounds of AC and 12 rounds of taxol. I'm only 2 weeks past my first round and so far am feeling ok but I'm expecting that the side effects will be cumulative so I may not be feeling this good in a few months :neutral:
    I have also been told to tell my oncologist about all my side effects as some of them can be managed quite well. So far mine haven't been too bad, just a bit of nausea, feeling lethargic and getting a skin rash at about day 10 that went away on its own. I've also heard that the AC is worse than the taxol so hopefully the second half of your treatment will be a bit more bearable 
    Rochelle xxx

  • Glemmis
    Glemmis Member Posts: 343
    Hi Ro10 I had the skin rash too on my back around round 2  of AC but was helped with Moo Goo, just had round 3  so will see if it comes back.  Also my head was sore & itchy before my hair fair out & used olive oil which has now settled, just minor things overall, a bit of nausea but not too bad. Still feeling quite energetic. Considering my surgeon said "it would knock me flat" I think I am doing well so far!
  • Tracey62
    Tracey62 Member Posts: 298
    when I had chemo last year several ladies suggested Fruit Tingles for that horrible metallic taste. In my chemo fog I forgot to try it, but it might be worth a go xx
  • submarine
    submarine Member Posts: 14
    I am so happy to have joined this forum - it is "funny" how one can feel connected with a group so quickly. Thank you for making me feel so welcome. 

    My AC rounds have been every two weeks (instead of 3 I am told) which is why I think my body didn't get to recover after each time. 
    I felt great after the first one and had assumed it would be the same each time (how naive!).
    I too had terrible reflux after the second one (felt like I was in labour for 4 days - but no baby at the end), doctor gave me Pantoprazole and it has helped. And I have also changed my diet - no more processed food, starch and sugar (basically I eat meat, veggies, fruit, cheese, yogurt and nuts), and I think this has helped my stomach a lot. 

    I have my 4th and last AC on Tuesday, then 12 Paxol then radiotherapy for 6 weeks. I am a bit scared of the last AC round as I spent 4 days in bed this week and I wonder what this one is going to bring... But it will be the last one and I too was told the next ones will be easier! 

    My 2 little boys help put a smile on my face every day no matter how bad I feel, love is powerful!! :)

    Have a great Sunday everyone,
    Marine xo
  • Afraser
    Afraser Member Posts: 4,352
    Hi there

    Good luck, it's a tough road but you will get there. Most people find Taxol much easier, but a few tips. You can lose your taste buds and they will come back! Most people find spicier stronger flavoured food best (because you can taste it!) but I found eggs, salad, bananas and avocado were the things I could enjoy most. Fingers and toes can be affected. I only got minute discolouration on my fingernails but my toenails weren't so good. Check with your oncology nurses, ice water is sometimes recommended. The nerves in fingers and toes can be affected too. Report any tingling early and get advice on how to minimise it. Numbness in your fingers or toes can be an awful nuisance, but it will improve after your treatment ends. Taxol is a bit of a hurdle race, count down the hurdles leapt over. Each one jumped deserves a celebration!
  • Ro10
    Ro10 Member Posts: 59
    Hi @submarine, it's funny that you relate the side effects to pregnancy. For the first week, I felt like I was in my first trimester with morning sickness. All I wanted to eat was salty savoury food and the thought of eating a salad made me want to vomit! And I get heartburn and reflux which I had badly at the end of my pregnancy. I can imagine it would be hard doing AC every 2 weeks as I think it takes the body about 3 weeks to recover from the dose so you probably never really recover properly before you are dosed up again. At least you only have one more round left! I have also changed my diet a bit to a low sugar low carb diet (with a few occasional treats) and I'm taking a few supplements from my naturopath which I think is helping.
    @Glemmis I got the rash over my face and neck, I felt like a hormonal teenager going through puberty again! Luckily it only lasted a few days but I'm going to speak to my oncologist about it. 
  • primek
    primek Member Posts: 5,392
    I found  Round 3 AC the hardest. Round 4 wasn't as bad bizarrely. Maybe the joy of it being finished. I was even able to do some  exercise again. Taxol is quite  different . ..comes with its  own set of side effects but the wipe out week isn't  there fortunately. Take care. Kath x