Hi all, i just thought id start a group for anyone going through the pembro/carbo/paclitaxil/EC regime for TNBC.
Mainly because im finding the carbo weeks realllllly tough going, especially on top of the weekly paclitaxel and it would be good to whinge about it to others in the same relentless boat.
Have also just been told i cant do this week’s pac because of antibiotics for a chest infection. Im hypothetically disappointed but secretly thrilled to get a break…
Hey @wildthingsare
This is a great idea for a thread as this treatment is pretty specialist and complex as can be its side effects!
I, too, found the fallout of the weeks of the “big three” as I called it to be much rougher and longer lasting than the Pac alone and others in my chemo unit on the same regime reported the same.
It is hard-going doing it every week too. As soon as you start feeling even remotely normal, it’s time to do it again! I have my last Pac tomorrow, which will be week 12, before moving onto the 3 weekly Pembro/EC portion of the show for 3 cycles and I don’t mind saying that I’m proud of myself. And I hope you can say the same about yourself. x
Wow congratulations on getting to the end of this batch, that’s amazing! The finish line is in sight! Is your plan for surgery and radio after the chemo (although i think you’ve had an unusually difficult route this far is that right?)
Ha yes the big three absolutely wipes me out! Ive been basically housebound for six days and on the 7th, im back in hospital for bloods and to do it all again. Im dreaming of the three week cycles and all the recovery time!
Thank you! Yes, I have surgery to follow after this course of chemo is finished. I have previously had a lumpectomy and as my current diagnosis is an early local recurrence, I’m not sure yet if this will be a further wide local excision of the area or a mastectomy. I have been prepped that it could be the latter, but I’m trying not to focus on it too much at the moment.
After surgery I have more Pembro! If I’m reading my consent form correctly, it looks like every 3 weeks for 5 cycles. I’m not sure about radio as it’s not been discussed on this treatment plan so I think that might depend on what surgery I have.
Aw bless you, it just makes you feel really off, doesn’t it? I find it very hard to describe because aside from the definitive side effects you can pinpoint, there’s just this weird “feeling”. I’ve only just started coming round after my last one because I was rough all week last week, then there was Pac again on the Friday, then feeling rough again after that until yesterday really. I don’t know about you, but the heat has very much compounded the issue for me too!
How far along are you now?
Ah, you’ve been through the ringer! I hope things will go smoothly second time round and you’ll see the last of the cancer finally. Was it hard work mentally having a recurrence so soon? Imagine that is extremely scary, especially when youve already had to come to terms with the initial diagnosis.
I’m on week 5 of the pac 12 weeks, which im still counting even though ive had to skip it this week! Hoping to be done with chemo for Christmas and to (maybe) get a bit more of my life back in September when i move to the three weekly ECs. Between appointments, school holidays and a very badly timed kitchen reno, this summer has been intense to say the least. On the plus side, literally everything in life will feel like a walk in the park compared to now!
Yes, it was definitely hard mentally. I found out at the end of April and was basically running on anxiety for a good deal of May as not only was it very unusual and completely unexpected, I also did become convinced it had spread absolutely everywhere! I did feel a lot of better once it was confirmed that this wasn’t the case and we had the new plan in place though.
I think you can count week 5 even though it’s been skipped! I’m always 100% on the side of safety over ploughing through so it’s good they thought that was the best course of action in light of your infection. I’ve just finished the weekly lot today and will be starting on Pembro/EC next week. Even if I feel rubbish for the whole week after, I’ll be so grateful if I manage to get a couple of weeks of feeling normal. But who can tell how it’s going to go. We shall see…!
Hi team. Jumping in here as a fellow TNBC-er.
I think ive interacted with you all…hello again.
Hugs and solidarity xx
Hey @sisters_of_percy!
How are you getting on with the treatment? x
Hi @mssteel thank you for asking 
just coming to the end of my first cycle of carbo/pac/pembro > carbo/carbo
Still got all my hair but a cupboard full of eyebrow transfers and lashes ready and about 5000 headscarves. If anyone is near Cov and wants to borrow them come on down, haha. I am not allowed to coldcap for the first part so prepping for it.
I’ve felt a bit grimy, not waves of nausea but mostly unpleasant for the first 5 days, then I picked up on day 6 and 7 and felt normal. Second infusion was fine, taste changed on day 10 and 11 and then went back to normal. Day 11, I did too way too much and felt like hammered sh1t in the afternoon but picked up again next day. Second crash was on the afternoon of Day 13 after a mentally draining day at work. Had a few episodes of hand tingling but been wearing cold gloves and socks during my pac infusion. Fingers crossed the gloves help.
Im a bit depressed atm though. I elected to come off my HRT (still waiting for the definitive answer from my oncologist but i got scared so didn’t replace my patch last week) and I think its a combo of that/roid rage/weird sleep/chemo etc and my husband is a social creature and has been out with friends most weekends when I’vebeen at home with a mouth that tastes like a bin and trying to avoid infections (bloods dropped this week too). Some days my fog is so much i cant string a sentence together. Ive had friends come and visit but after an hour my heads gone and then I need to go and sit quiet to recover afterwards.
I’ve been walking every day, i managed an at home Body Pump session but I miss exercise SO much. Was hoping to be cleared to go swimming but they said no. I have got to pull my pants up and get out of this funk as its not helpful and I cant let this win. I will not let cancer send me into a dark place. Its already robbed enough, little b*stard.
In chemo im Ms Positive, chattering to everyone and being everyone’s BFF and in full masking mode (i have ADHD possibly AuDHD) but inside im dying (literally and emotionally haha) and i came home last night and just felt drained and sad even though it was only a Pac!
So sorry, ive been awake since 5.30 and just feeling a bit pants atm. This regime is aiming to cure even though its sandblasting everything to achieve that. I’ve been through shit before, including divorce, can do it again.
Sorry! I’ve reread this and it is so negative.
TLDR On the whole side effects are manageable, though i get super tired and my mouth tastes like a bin and I’m emotionally drained. Could be a LOT worse though
Hugs and solidarity to you all. Keep kicking the sh!t out of your tumours, ladies xxx 
Nope, this post is positive!
If you’ve got a bin full of crap, shoving it down further into the bin and trying to keep the lid on it will only work so far before you can’t keep that lid on anymore and all the rubbish will overflow and make a big mess you have to clean up. So keep emptying that bin! 
This has made me laugh, as ive just read a whole thread on the mad Facebook community forum for where I live of people moaning about their new food waste bins 
You’re so right, if we don’t regularly empty the bin we’ll have a bigger problem in the end and we don’t want to clean that up as well as w*nky breast cancer
Ooh I’m just back from hols and spotted this group which I would love to be part of! I’m TNBC too and got diagnosed just over a year ago and have got through the horrible horrible weekly then 3 weekly chemo and immuno regime then lumpectomy in Feb then 23 x radiotherapy sessions and now am on another 5 x 6 weekly immuno jabs (subcutaneous rather than IV so much quicker) plus ibandronic acid tablets for 3 and half years! It’s been a pretty crap year all in all but light is at the end of the tunnel now! Keep on going TNBC friends … we are all amazing strong women and we will all beat the crap out of our cancers.
I had to skip my Pembro a few times first time round due to hepatitis and had so many steroids! Also had various side effects from chemo some of which still not entirely gone. But I’m told I’m rocking my new post -chemo hair regrowth so I’m keeping it super short and grey - very low maintenance!!
Lovely to connect with you all.
Helen xx
Hi Helen
Welcome to the group and hope you had a fab holiday!
I was diagnosed with stage 1, grade 3 TNBC in November 2025 and had a lumpectomy and node biopsy in December, which came back all clear in January 2026. Started adjuvant chemo with a dose of EC in April then was confirmed to have a local recurrence consisting of three tumours totalling 36mm under the lumpectomy scar five days later. Chemo was switched to the horrible horrible one, which I’ve just completed the weekly phase of and I’m moving onto Pembro with EC this Friday for 3 x 3 weekly rounds. My MRI in mid-July has confirmed a complete imaging treatment response so far. Further surgery to come later and more Pembro, but I’ve mentally parked these for now to focus on what’s happening at the moment.
Sorry to hear you had hepatitis during the treatment. My persistent hiccup appears to that the chemo is intent on murdering my haemoglobin, but I’ve not had anything derail the treatment so far (touch wood!) Out of interest, which side effects are you finding to be long lasting?
So glad you’re enjoying your post- chemo hair! x
Hi @mssteel thanks for replying. Lovely being able to swim in the sea as this time last year I was worrying about how long my PICC line would be in for - they removed it as soon as chemo finished before my surgery.
Oh how scary for you getting that recurrence so soon. I hope you get through the chemo ok. I still have some peripheral neuropathy in fingers and toes and my finger nails and toe nails still look pretty disgusting- I just keep painting them to make the look ‘normal’! Glad it’s flip flop weather as my feet don’t feel right in shoes at the moment.
I was told to stop HRT so even tho I’m 59 my menopause symptoms are back with a vengeance - I’m not sure what’s down to that and what’s due to the cancer drugs? Hot flushes, night sweats, restless legs, joint pain, brain fog, etc.
Apart from feeling extra tired the first week after Pembro I seem to have avoided side effects this time (hepatitis and skin rashes previously) so maybe it’s easier to tolerate on its own?
Sending positive vibes. Take care x
My 19 year old daughter was diagnosed 2 weeks ago and started this chemo regimen last Tuesday. Any insight or advice I can seek to help her through this would be really appreciated. Heading to clinic. Is with her hands in a hot water bottle as she has rubbish veins 
Hello, ladies 
…. I’m Kerry, 51 … married to Dave, 21-year daughter Tilly who has lived in Australia for the past 2.5 years (went to travel for 5-months and has not come back!!) … (@mssteel knows me from our March chemotherapy thread) … I was diagnosed with TNBC in January, and started neoadjuvant treatment at the beginning of March … completed my final EC on Thursday just gone 
I have a mammoplasty booked on the 9th September and we’ll see from the results of that what happens next! I like to be part of a TN thread as our journey is somewhat different to hormone-positive breast cancers 
so HELLO all 
Can I join in too please? I’ve been diagnosed with TNBC and I’m due to start Carbo & PAC in a couple of weeks, followed by EC.
Hi all, there’s so many of us! Sorry you’re all in this crappy club!
You know what i hate? Hearing about how ‘aggressive’ triple neg is. As if having cancer isnt bad enough, i dont want an especially aggro one!
Hey @big
So happy you’re done with chemo and hope the last EC wasn’t too rough on you. Hopefully you can enjoy a little treatment break before your surgery. x
Hey @bryna
Did you get all the info you needed out of your onco appointment today?