Triple negative breast cancer

[Shi]

Beryl peril ❤️ When you know your treatment plan please look out for relevant thread I.e. chemo starters Aug 2019 or chemo starters 2019 or surgery threads 👭👭we are all virtually hiking your 👭👭and the nurse option and someone like me options on here can help too ❤️❤️ Just take it a step at a time 😁 and don’t ever feel alone, there is ❤️And support and believe it or not much 🤣😂🤣😂🤣on here 💕💕✨✨Shi xx

[Shi]

👏👏👏👏💪💪💪💪😘😘😘you ring the heck out of that bell mini mad 😁😁😁and pick a tune and we can all have a dance and celebrate with you. What time will you be ringing and let us know your tune so we can play and dance where we are with you 😁😁😁💕💕✨✨Shi xx

[mini mad]

Hi to all you ladies here on the TNBC forum.

so many of us it seems , at different stages in their treatment ..

so about me.... TNBC diagnosed in Feb 2017... WLE and  nodes taken...Clear margins... 15 radiotherapies.

TNBC diagnosed again in March this year following my 2 yearly mammogram...same breast.

left mastectomy and 3 level 1 axilliary nodes taken..  again clear margins..

12 Paclitaxel weekly with Carboplatin every 3 weeks.   

Tomorrow is my FINAL Paclitaxel....Carboplatin all done .

not sure what if anything happens next once ive seen my chemo dr nxt week.

to all who are starting their treatment and to those who are having their treatment,   Hang in there, take each one as it comes..Be strong and positive....  side effects, do what you have to do to handle them... i had every single se but not all at the same time..... be kind to yourself 💖  have a good cry then dry your eyes, take a deep breath and carry on.

there is an end to all this crap being pumped into your body...  WILL I RING THAT BELL  TOMORROW AFTER MY FINAL SESSION.......  HELL YES   

good luck to all you lovely ladies... mini mad xx 💖💖

[lisaloo79]

Hi Berylperyl

im sorry you find your self on here. I was diagnosed on the 19th July. All the lovely ladies on here gave me so much strength and help. I now hear myself telling you what they told me. This first bit really is the hardest..one appointment to the next if not knowing what’s happening. Once you do know what your treatment plan is you feel more settled (as settled as you can be anyway) I started chemo last Friday (16th) so I’m 6 days post now and although Iv a very long road ahead of me I feel like something is actually happening now. 

Stay strong and feel free to message or pop on here anytime for a chat. 

Lisa xxx

[berylperil]

Thanks Rachel, so good to hear from someone who is down the line, that feels positive. X

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@rachelr wrote:

Hi Berylperil,

It's all a bit scary at the beginning,  I know, but it should help when you've seen your oncologist and have got a treatment plan. I went through lumpectomy, chemo and rads over 5 years ago for TNBC and it all seems so long ago now. Keep us up to date on how your onc meeting goes .

Rachel xx

---

[rachelr]

Hi Berylperil,

It's all a bit scary at the beginning,  I know, but it should help when you've seen your oncologist and have got a treatment plan. I went through lumpectomy, chemo and rads over 5 years ago for TNBC and it all seems so long ago now. Keep us up to date on how your onc meeting goes .

Rachel xx

[berylperil]

Hi

New to the forum, and new triple negative diagnosis. First oncology appointment friday. Feeling wobbly. 

[lisaloo79]

Hi Nicola.. I’m having EC first then pacitaxel. No pic line it’s just going in via cannula. 

Thank you for the tips and advice. Everyone keeps saying to me “oh it’ll fly by” and I keep thinking shut up it’s not you going through it! 😆 it’s nice to hear from people actually going through it that once you get started it does actually go quick. 

Lisa xxx

[NikNak5]

Hi Lisa

im not going to lie, my first dose of chemo I was petrified, I sat in the chair on the day unit in tears. My first dose was not pleasant it was carbo & paxel but after 2 days I wasn’t too bad. I didn’t bother with a cold cap. My hair started to fall out from week 5 & for me this was the hardest thing ever. I’ve now done 12 weekly chemo’s & 3 out of 4 cycles of FEC, my last dose is on 28 Aug, 20 days and counting! It’s a long journey but necessary. You are at the hospital a lot & the weeks do fly.  Have you had a PICC line fitted & do you know what course of chemo you are having?

i found writing a daily journal helped as I was able to look back to see how I was feeling on certain days, you kind of get in a pattern so you know what to expect each dose. Do get yourself a thermometer as you’ll need to take your temperature each day.

its a scary thing to start but the nurses & staff on the day unit will put you at ease & answer any questions you have & so will you Chemo nurse. I didn’t really have any bad side effects but have got more fatigued towards the end & for the last 4 chemo sessions I’ve suffered with oral thrush. You may need some form of constipation relief too as you have so many drugs they tend to bung you up.

i hope this helps & I’ll be thinking of you next Friday, it’s scary but you can do it. Happy to chat anytime x

nicola

[lisaloo79]

Hi Nicola 

It is a worry that’s always going to be there isn’t it. But hopefully as treatment is progressing they will be something eventually to stop it recurring.  

How have you found the chemo? I’m starting mine a week tomorrow. 

Lisa xxx

[NikNak5]

Hi Lisa

i also have TNBC and am 47. I’ve been tested and it’s not generic so that is a relief.

I had  paclitaxel weekly for 12 weeks along side carboplatin every 3 weeks. Then I switched to FEC every 3 weeks for another 12 weeks. It is a long time but part of the process to recovery. I have one more FEC to go at the end of August, surgery for a lumpectomy scheduled for 25 September.

My only worry is that TNBC can reoccur quite quickly so I have that floating around in my head at the moment. 

Once you start your journey time will go quickly. Read, practice mindfulness, adult colouring anything to relax.

Is there anyone on here who has reached the 3-5 year milestone recovering from TNBC? 

i wish you & all the other ladies all the best. 

Nicola 😊

[lisaloo79]

Hi Dezee

Thank you so much for all the tips and advice. I am trying to think more positively now and I’v down loaded the mindfulness app to give that a go too. I’m still having my moments and having a flap about everything but I’m sure that’s only natural. 

Lisa 

xxx

[Dezee]

Hi Lisaloo

I am also TNBC and started chemo in May. I have finished 3 cycles of EC and am now doing Carboplaton every 3 weeks with 12 weeks of paclitaxol finished my 4th cycle with three more to go. So all in all 5 months worth. I really appreciate how scary everything seems at the beginning, but the other ladies are absolutely right, once you start your treatment at least you feel you are moving in the right direction.

I had a few counselling session before and during the start of treatment and that really made a big difference to accepting and processing what what happening. Also I downloaded the Calm app for mindfulness which helped with relaxation and sleep and listened to Dr Chatterjee's book on the 4 pillar plan: how to eat, sleep, relax, move. I made a pledge to get fit to help my body and mind cope with the gruelling treatment, but I have to agree with Shi, there is nothing that helps with the effect of steroids. When you are on them there is no way you are going to sleep well, so just get up at night and do something , anything. And lastly, remember there are a lot of positives that come out of this diagnosis: you will reevaluate your life and hopefully make the things that are most important come to the fore, reconnect with friends and family and drop things that do not make you happy. Make sure that you organise something fun on the good week between chemos and has already been said enjoy the chocolate and other good wish gifts that you are bound to receive. 

Dezeexx

[lisaloo79]

Thank you ladies.

Just seems such a long time and then I was thinking why do I have to have it for so long! 😳 

I do just want to get on with it now though! 

Lisa xxx

[Suffolkjewel]

Hi Lisa

i also had 6 months of chemo.

I had  paclitaxel weekly for 12 weeks along side carboplatin every 3 weeks. Then I switched to fec every 3 weeks for another 12 weeks. It sounds like a long time but i felt it when quickly.

Hope this helps

[rachelr]

I had 4xFEC and 4xDocetaxol rather than EC and & paclitaxol, but as it was given every 3 weeks my Chemo lasted 6 months. It sounds like a long time but it does go quickly!

One of the best tips I had for Chemo was to keep a detailed diary of exactly what happens after each Chemo - when you take the meds like anti sickness etc, what side effects you get if any (hopefully none) and when they occur and how you are feeling - this really helped as the days following the 4 FEC followed the same pattern as did the 4 lots of T and it was reassuring to be able to anticipate what would happen and exactly when I would be feeling good and not so good.

Let us know how you get on ☺ xx

[lisaloo79]

Morning 

I'm having EC and packitaxel. Is it normal to have it for so long? 6 months feels like forever 😫 

Lisa xxx

[rachelr]

Hi Lisa,

It's good to know that you've got a good oncologist and that you're going to be starting chemo soon- waiting sucks and scary though the thought of chemo is, once you get started, everything will seem more positive.

What chemo will you be having?

Rachel xx

[mini mad]

Hi lisaloo79

so glad you've met with your oncologist at the new hospital for you.

i believe that another woman can understand how we feel and can really reassure you.

i was told that if you choose to look on google that a lot of posts are old ones.

guess you must know your treatment plan by now.... what will you behaving ???

my first chemo i was absolutely terrified 😬😬🤭🤭 and my blood pressure was sooo high.

today i had my 9th out of 12.....paclitaxel , once a week for 12 weeks and Carboplatin,once a week but every 3 weeks.....  just take each session at a time.

any side effects you MAY have will be treated accordingly...  just talk to your chemo team.

big hugs to you and all of us ladies who are going through and facing this " one day a cure will be discovered for all breast cancers "  and come out the other side 💖💖💖  mini mad xxx

[lisaloo79]

I will Shi.. I’m still 💩 it..but she made me feel like there was hope. Just know Iv got a long slog ahead of me.. 6 months seems such a long time!! 😫 Xxx

[Shi]

Hi Lisa loo 😘glad you’ve had a more informative meeting 💕it is always good to have someone who gives you confidence. Please do join the August 2019 chemo starters, you can all 👭together and wolvesgirl who is tn too can 👭through 😘💕💕✨✨Shi xx

[Suffolkjewel]

Hi Lisa

Hopefully now you have an action plan you can feel more positive. If you can plan some treats before you start chemo it may make you feel better as well. Remember you can do this. Sending hugs.

[lisaloo79]

Hi lovely ladies 

Just a little update as Iv been and met the oncologist at the hospital nearer to me where Iv been referred to. She is really lovely and explained it all to me much better than at the other hospital and really put me much more at ease about it all. Well I’m still flapping as that’s just me 😆 but feeling a bit more positive and not so much like I’m doomed! I’ll be having 6 months of chemo then a mastectomy possibly followed by radiotherapy. Will be starting chemo either This Friday or the one after. Awaiting a phone call from the chemo dept to go for a look around and a chat. 

Lisa xxx

[FiMillan]

Sending you big hugs lisaloo 🤗🤗

We've all been there and had those exact same thoughts I'm afraid. I wish there was a guarantee so instead you have to make that guarantee for yourself, that your team will do everything they can and you WILL get through this 💪💪 Be strong and be beautiful 😚

💜Fiona xxx 

[lisaloo79]

Suffolkjewel

Thank you for your reply and your advise. There seems to be so much negativity surrounding TN and I scared myself half to dearth looking on google. I thought this is it! My times up. My worry is if the chemo doesn’t do what it should!! Then what?? 😳 if there’s isn't much else they can throw at it. Iv not looked at google since.. I’m proud of myself 😆 I’m having days where I feel positive and think I can do this then says when all I can think is the worst. 

Lisa xxx

[Suffolkjewel]

Lisaloo

i was diagnosed with tnbc 1st June last year. I had 6 months of chemo, which wasn’t a bad as I’d thought it would be. Don’t get me wrong there were days when I couldn’t stop crying and felt completely exhausted, but I got through it. I then had a lumpectomy followed by 15 lots of radiotherapy which was a breeze. I’m now in remission and back at work.

My advice  is to not google and trust your medical team. They know what it is and how to treat it. Try to take someone with you to your appointments, my husband came to all my appointments and was with me every step of the way, my absolute superstar. Also keep a journal or note of how you are feeling each day, this will help when you are feeling rubbish, you can look back and know it will only last a few days. Surround yourself with positive people and accept all offers of help.

Finally enjoy the chocolates and flowers, there will be loads!

Hope this helps

[Shi]

Hi Lisa loo I’ve pm’d you again 👭 💕💕✨✨Shi xx

[Shi]

Hi lisaloo, I’ve pm’d you 💕💕✨✨Shi xx

[lisaloo79]

Thank you ladies.

I really wish I was as strong as you all and I could get these negative thoughts out my head. I just want someone to tell me I’m going to be ok and the fact no one can actually guanrtee I am going to be scares the life out of me. 

Do you take the ma matcha powder again now? Iv read up on that. 

Lisa xxx 

[Shi]

We all inspire each other ❤️❤️❤️ Together we are 💪💪💪💪and lisaloo, Fi is another tn in remission 👍and a great lady 😘😘we are here 👭👭💕💕✨✨Shi xx

[FiMillan]

Lisaloo, what everyone has said here is right - once you know your treatment plan and have a start date, you'll feel a lot better emotionally (daft as that sounds) because you know then that you and your team are fighting this disease.  Just take it one day at a time and use the forum as much as you can.  Nobody wants to find themselves in the situation that we are in, and triple negative is rubbish.  But just look to the success stories  - Shi, for instance, has been an inspiration for the Oct 18 chemo ladies and myself in particular as I was TN too and am now in remission.  

No-one will deny that it is a hard journey, but just deal with one day at a time and try to stay positive.  

My husband came to every appointment with me and he took notes so I would advise you to take someone with you to every appointment with the oncologist, consultant, etc whenever possible.  I couldn't always concentrate so having him there helped me mentally because I knew he could take in the information while I became a pile of jelly 😉

I know how you feel, this waiting is pants and your mind can't think of anything else other than BC and the what ifs. Have faith in yourself and in your team.  Positivity really is the key.  And a strong support team too, family and friends. I was in a daze for weeks, just going from scan to scan to consultant until I got into the first round of chemo, then it all becomes routine and safe.

Oh, I'd also advise you to take note of your reactions to the chemo so that you know what to expect the next time, even if it's something simple as a headache, runny nose, watery eyes.

I got through chemo by having post-it notes on my fridge and crossed off every day and every week - it helped me to look forward.  And a jar of joy, where I'd put a note on a piece of paper of something that made me happy or smile that day.

You will find your own little ways of getting through, but you will get through, a lot stronger emotionally, and we'll be there waiting for you to celebrate the end of treatment.

We're all with you, Lisaloo, holding your hand.

FiMIllan xx

[Shi]

Sorry speak to your onc, don’t know how that got changed to dad bc 🤬gremlins in the system 🙄

[Shi]

Hi Lisa yes I came off green tea, I was as having matcha powder so I asked my onc about everything in the prep meeting. Speak to your dad bc at the meeting, that’s why I had a note pad along the whole journey, it was just my way of getting through, treated it like work meeting and taking actions away, then went 🤪🤪🤪on the forum, if you ever need a 😂🤣😂🤣read our oct17 thread it’ll have you 🤣😂🤣😂 there will be an August chemo starters thread either already on here or one starting in next few days, join up, it will give you 👭💪 and you’ll do it together ❤️Because no one will understand the way ladies on the journey do 😘😘 try some lavender pillow spray to help you sleep 😘😘but the f you are anything like we all were on the steroids we were bouncing off the walls at all hours and all regularly posting away to each other in the middle of the night when we were all 🤪🤪🤪🤪and having 🤪🤪🤪in-line steroid induced shopping sessions, you have been warned, you might go shopping 🤪🤪🤪oh yes and during chemo you just say oh Chemo brain if your oh tells you off for shopping 😁 sending ❤️👭❤️👭❤️For tomorrow we are all here 💕💕✨✨Shi xx

[lisaloo79]

Hi 

did they say to stop drinking green tea? 

Im having chemo first then opp. I’ll be starting it within the next week or 2 I’d of thought. Just waiting for a date to see the oncologist to find out starting date. 

Lisa xxx

[Shi]

Hi lisaloo, I took in a notebook and asked lots of questions, I.e were there things I needed to stop during chemo ie green tea, turmeric etc, I do don’t want anything interacting with the chemo (I had chemo after op tho) I found just taking it a step at a time worked well and you’ll join your chemo thread and we’ll all pass on tips and before you know it you’ll be in the rads 😎lounge then onto club Tropicana thread where we will have a sun lounger waiting for you and your celebration tune, so get thinking what tune you want to celebrate end of chemo, for after op and after rads and for club Tropicana ❤️ Please let us know what treatment plan they put you on and when you will start and we’ll share chemo tips with you and the other ladies you’ll be on the thread with ❤️Please use the someone like me facility on here ❤️❤️It’ll help. 💕💕✨✨Shi xx

[lisaloo79]

Hi 

Thank you so much for the replies. It means a lot. I am really struggling with it all every day and can’t sleep at night. How did everyone else try and get themselves in a positive mind set. I’m hoping I’ll maybe feel better once my chemo starts as then I’ll feel something is happening. 

I can’t atop thinking of the what Ifs... and I’m really not ready to go anywhere yet. I’m tying to stay off my phone if I can and away from dr google as that’s what’s scared the 💩 out of me and made me think I could actually die from this!! 

Thank you all so much for your support ❤️ 

Lisa xxx

[Shi]

Lisaloo, that’s right I was 😳, at my first chemo, then thank God I met mai7, she took me under her wing and all the May17 thread looked after us oct17 thread and the july17 thread looked after us too and the cc’s 👍 and the bcc teams so much love and support ❤️❤️❤️💕💕✨✨Shi xx

[Mai7]

Hi Lisaloo, sorry you find yourself here.  The bad stuff is always easier to believe.  Shi was triple negative and just as scared as you when she started treatment but got through it and is ok now.  I met her at my last chemo and her first and I can still remember her face and how terrified she looked.  I was ER+ but very locally advanced stage 3 and I’m still here to tell the tale over 2 years later.  Here’s my blog which you may find some comfort from: http://lifeafterlola.com/

sending hugs. Xxx

[FiMillan]

lisaloo

I'm so sorry that you find yourself on this forum but please believe me you really are among friends here, and the best sort you can find.  We've all been there or are going through it so can fully understand what you're feeling.

My husband found my lump on 31 August last year, my birthday - some birthday present, eh?  I had to get through the weekend before I could go to the GP then waiting for the referral and all the tests.  The waiting is always the hardest part but trust me, you need to do all the scans and tests so that your team can work out the best course of treatment for you.  It was almost 2 months before I started chemo and I was terrified about how much it would grow in the meantime.  My team were excellent and yours will be too.  Trust in them.  I had neo-adjuvant chemo, in order to try to shrink it, then surgery then radiotherapy.  I finished my treatment on 20 June this year.  When I saw the oncologist before chemo no 2 they asked me if I thought the chemo had done anything and when I said I thought it had shrunk they wouldn't believe me.  So they measured it.  And yes, it had shrunk   And by the end of 6 sessions of chemo, the lump in my breast had gone and 3 out of the 6 affected lymph nodes had been "cured" too.  So please look on the positive side, talk to us as much as you want.  I too am in remission, like Shi.  Positive attitude, trust in your team and support from us and your family and friends are so important. We're here for you, Lisaloo xx

Fixxx

[Shi]

❤️Lisaloo, it’s easy to let dr google 😳you and you think 😲oh 💩. But please focus on the success stories, there are lots of them 👍as I’ve said, please do google Patricia prijatel, she’s seen off tnbc twice 💪a friend of mine said at time of my diagnosis - positive mental attitude and that helped me a lot, I focused and pulled my kylie gold hot pants up and with the ❤️and support of everyone on here and my amazing team and God kept a 😁on my face, is oct17 thread had a tune a day on our chemo jukebox and 👭👭👭💃🏻💃🏻💃🏻🕺🕺💃🏻💃🏻😂🤣🤣🤣😂🤣 our way through together, then had a weekend in London last year together to celebrate getting my through ❤️ you will find the strength, you will do what you need to do your own way and in your own time, this journey is yours and you do what’s right for you ❤️ just ask on the threads if there is anything you want 👭with the ❤️and support of ladies who had already gone through treatments and passing their tips on and also the 👭of the thread you share your journey with turns what should be 💩into something so beautiful ❤️ find what strawberry blond wrote it’s inspirational about the mountain lion and also try and find mai7’s life after Lola blog ❤️she’s amazing 💕💕✨✨Shi xx

[lisaloo79]

Thank you so much for your reply Shi.

im hoping I can find your strength to get through this. Wish I hadn’t looked at google as it’s all so negative and basically saying if you have TNBC your doomed and very lucky to survive it! 😫 not what you want to hear. 

I’m just feeling that every set of results from now on are going to be bad. I know I need to get myself out of this mind set and quickly! 

Lisa xxx

[Shi]

Lisaloo 😘 some other tnbc survivors for you to focus on, Shannon Doherty, robin Roberts and Patricia prijatel. Patricia prijatels book surviving triple negative breast cancer was very useful to me, so might be worth having a look. I was diagnosed june17, operation, 6 chemos then 15 rads + 5 boosters finished March 18 and been in remission since 👍 use the ask the nurse and the someone like me facility on here, also using the threads will give you support and tips and crazy as it sound many 🤣😂🤣😂🤣 along the way as everyone navigates the 😳💩 because you do it 👭👭together and together you are 💪💪💪 everyone is here for you 💕💕✨✨Shi xx

[lisaloo79]

Hi Rachel 

Thank you so much for replying.

iv had a really tough few days trying to get my head around everything. Its the triple negative status I can’t get out of my head and all the negativity around it.

I’m worrying every niggle is a sign of it spreading as I haven’t had my mri ect scans yet. I’m petrified they turn around and say it’s spread as since being diagnosed I’m thinking Iv got back ache, stomach ache, everything 😫 I’m driving myself nuts. 

I have to have chemo first so I just want to get it started really so I feel somethings actually happening xxx

[rachelr]

Dear Lisa,

Please try not to over think the TN status - I was diagnosed grade 3 TNBC over 6 years ago and after a lumpectomy , FEC-T chemo and rads I am living life now without giving too much thought to BC (apart from the usual worries at each annual mammogram !)

Rachel xx

[mini mad]

Hi Lisa,

its so scarey when we get our results 😳😳

i am also Triple Negative,  you will find lots of us on here who have been exactly where you are.

once it sinks in then the panic/worry/what if kicks in.

i felt more positive once a treatment plan was in place because then you know what you're facing.

take one step and one day at a time 💖

studies/treatments are progressing all the time so be strong for your family.

let us know what comes next for you .  BIG HUGS..  mini mad xx 💖💖

[felicidad]

Dear Lisa,

I am sorry to hear you have TN. I was diagnosed with TN last May, at 34 years old and started chemo in June. I am on my second EC chemo cycle and the tumor is responding - my latest ultrasound showed it has shrunk.

I also checked online about TN but just to check the treatment I was offered is the standard one for this type of BC. Statistics are results of research done to a small group of people, who knows from which country, and probably some time ago. Every day there are new developments and findings. Each individual reacts differently .

Your medical team wants the best for you, listen to them and ask them questions. Food and nutrition is really important for your physical and mental health, so do your best on that area. There are many, many women who survive TN for many years or never see it appearing in  their lives again. There are women who get other primary BC down in the future and survive that , too. I will focus on the worst case scenario only if  it happens.

You are not alone on this xxx Big hugs

Felicidad

[lisaloo79]

Just been diagnosed with triple negative breast cancer. 

Did what I was told not to do and googled it! Now I feel like Iv been handed a death sentence. I’m playing it down to family and friends but all I’m reading is negative things about it.

Had zero sleep last night worrying about it, I’m not ready to leave my kids yet I’m only 39!

I literally feel sick all the time and can’t stop thinking I’m going to die.

positive comments only please. I need some positivity. 

Lisa xxxx