Triple Negative - had first EC treatment

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HI,

I was diagnosed with triple negative breast cancer three days before christmas - what a ride it’s been so far. I had my first EC treatment on Feb 9th and so far no side effects from that (though starving all the time).  I used the cooling cap so let’s see if that helps with hair loss. Today I found out that my tumor is 16mm in size with no sign of spread to lymph nodes - plan is to continue with EC, then move to weekly taxol, then surgery - unless scans show no reduction in which case plans might change.

Any hopeful tips out there? Ive had some really dark and tearful days. Today feel a bit brighter and a sense of ‘I can do this’ - but I’m finding my emotions can flip so quickly. Im doing all the right things - good diet, walks, cuddling dog, yoga - all the stuff I have always done actually. I just want to know I can survive this.

  • Hi  

    I was diagnosed with TNBC at the beginning of April last year. I had surgery first, then 3 cycles of EC, 12 weekly sessions of paclitaxel and then 10 sessions of radiotherapy. My treatment finished a month ago.

    I'm glad to read that you've had no side effects from the first EC. I was similar in that I just felt a bit under the weather for the first 10 days and then felt completely normal leading up to my next EC. My chemo nurse told me that if I'd felt generally well after my first EC, I would probably be the same after the next two and she was right. I found paclitaxel even easier and didn't have any side effects at all.

    It certainly sounds like you're doing all the right things to help you cope. I was told to try and do everything I'd normally do as this would help counter any side effects. I also drank lots of water, something I'm not normally good at.

    There's nothing wrong with having the occasional down day. You wouldn't be human if you didn't. I tried to concentrate on just one aspect of my treatment at a time, ie. when I was having surgery I didn't think about the upcoming chemotherapy and that seemed to work for me.

    It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi there,

    Thankyou so much for your reply. I read your profile (thanks for the advice by the way) and it seems like you have had quite a journey. I am taking great strength from seeing how people do come through.

    I was curious that’s you had surgery first before chemo - perhaps thats what was recommended? Good to hear you did ok worth side affects on both different types. I’m hoping for the same. 10 sessions of radiotherapy - was that straight after the last chemo or was there a break? And was that daily?

    Sorry for all questions - I’m just getting to the place where I can think about there’s things as it’s all been a bit of a blur up to now. X

  • Hi  

    It was only when I was having chemotherapy that I realised that not everyone had surgery first. I'm not sure what the criteria is but there were ladies like me who had had their surgery whilst others were having chemo and then surgery. 

    I started radiotherapy 5 weeks after my chemo finished. I had a radiotherapy planning appointment first when they use a scanner to take measurements and photos so that they can plan where they're targeting the radiotherapy. This was about two and a half weeks after my last chemo session.

    The radiotherapy was daily except for weekends and as mine started on a Thursday I had 2 days of radio followed by 2 days off, then 5 days of radio followed by 2 days off and then the final 3 days of radio. At the first one I was given the times for all of my treatment so I could plan in advance.

    I'm happy to answer any questions you have if I can.

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • I am one year into this, I have been blogging my experiences. Good luck with your treatment. community.macmillan.org.uk/.../a-trip-with-triple-negative-breast-cancer

  • I have been away from the forum for a while but I’m back to share my experience now. I was diagnosed last July with tnbc grade 3, had 4 rounds of EC (every 3 weeks) then supposedly 12 weekly rounds of paclitaxel. I reacted poorly to both but worst side effects with EC with complete loss of appetite and vomiting every time I put food or liquid into my mouth. I reacted to paclitaxel less in a way however with different side affects, these included skin rashes and subsequently neuropathy of hands and feet. So doctor changed to paclitaxel albumin bound one that was given every three weeks instead, this was due to my low white blood cells every time I had the chemo. Hence I had a lot of Filgrastim injections. I had a very good response to EC, the MRI results showed after I completed the EC, the tumour was almost shrunk to nothing, because of this, I only had 3 rounds of paclitaxel in the end. I had the lumpectomy and sentinel lymph nodes removed 3 weeks ago, the results showed no invasive cancer cells in the biopsy so very good news, now waiting for my radiotherapy plan. 

    I had some really dark days when I couldn’t keep anything down, couldn’t sleep or generally felt grotty all the time, but i survived it , so yes just believe in yourself that you can come out of this dreadful situation. Try to be positive, like talk to people who are positive and give you good vibes and encouragement. 

    When I hear you are doing fine after your EC I am very happy for you, and I pray the subsequent treatments will shrink your tumour like it did for me. Just be positive, if you feel well generally then carry on doing things you enjoy, when you’re tired and I think you will feel like that after several rounds, take plenty of rest and have someone to help you out in cooking, that would certainly be helpful and you certainly need that extra support in these circumstances. I wish you get well and trust your medical team on this journey.

  • Thank you for your reply - sound like you had quite a rough ride with side effects of the treatment. But you are through the worst Im thinking - I wonder how many treatments of radiotherapy yo will have?  I couldn’t have my second round of EC last week as the enzymes in my liver were too raised. I have just about eaten my body weight in liver boosting foods this week and thankfully I am back to normal. I am having my second round today - hopefully wont be snowed in at hospital as we have snow in Leeds! I continued to feel pretty well after first treatment - bit light headed at times and sore mouth for a few days but ok overall. No hair loss yet - dreading the cold cap today but will rough it out if I can. My lump feel very different already - don’t know how normal that is. It does feel smaller but I dont want to read anything into it in case it isn’t. I have an MRI on 22nd and that will tell the story I guess. I was reassured however by you saying how much your tumour shrunk with EC. How is recovery after sentinel nodes removal and lumpectomy? I have had genetic testing so not sure what my surgery will be yet - the lump is small enough for the lumpectomy apparently but if I have the gene mutation then the surgery offered will be different - no known breast cancer in my family but I only know so far back. I hope you have a good day today Jan

  • Hi Jan

    good to hear from you. You sound like very grounded and positive to me, so concentrate on the treatments to make you better one at the time. I remember I was a total wreck in the beginning, all those sleepless nights, anxiety and all negative thoughts especially in the nights. I came out thankful to the medical team who looked after me.  I realised too much worrying was not good at all. I used cold cap twice when I still had hair, by the third round of EC my hair started to fall out, so I had it shaved off. Everyone react differently to chemo with different side effects, yours were clearly different to mine, so keep having cold cap if you can. My hair is now growing since I stopped all my chemo, it’s about 1-2cm long so really happy about it. I was told the other day that the radiotherapy plan for me would be 5 sessions (mon-Friday) and they are offering me another week of boost so altogether 10, this could start in the next 4-6weeks providing that my wound heals completely. I came out of the nightmare when you hear the doctor say the tumour is responding well to the chemo, so my fingers all crossed for you when you feel the lump is changing and smaller, you might feel all sorts of sensations throughout but just let your doctors know about them. The genetic test usually take a long time to arrive so just be patient. Do keep us posted how you are doing or any questions you want to fire at us just go ahead, we’ll walk with you on this challenging journey. 

  • I am pretty grounded generally in life - yoga teacher so much to draw on! However I was a wreck for the first month whilst I accustomed to the shock and battled a million horrible thoughts and feelings - but I found my breath again (yoga hugely helped with that when I allowed it to) and for now I am staying with the present and holding on to all things good that I can as not doing so expends so much negative energy. I am looking forward to those words ‘ the tumour is responding to the chemo’.

    Of to pack my bag now for the day - have all sorts of lovely food, a good book and a very supportive partner - I’m making it all sound like a good day out!

    Do appreciate that ‘walking the journey with’ notion - thank you. It really does make a difference I’m finding.

    Good your hair is growing - i wonder if you will get the curls everyone talk as about?