I don’t know whether this adds any useful perspective or not. Initially diagnosed with tnbc in Feb 22, found liver mets by accident in August of the same year. In treatment throughout 22 and 23 with my last procedure in Feb 24. So I had breast surgery, liver ablation (twice), chemo (EC and paclitaxel), immunotherapy with chemo (pembrolizumab plus NAB-paclitaxel) and radiotherapy during those 2 years (not quite in that order). I also had a life threatening reaction to the pembro and had to manage a host of issues from both that, and from the 9 month course of high dose steroids needed to stabilise me. The last cancer treatment was in Feb 24. The steroids finished in June 24, and it took most of 24/25 to recover from the immunotherapy and steroid related health issues.
On initial diagnosis I hadn’t been overly worried. Reassured by it being small and not in my lymph nodes. Diagnosis of the first liver Mets put me in a bit of a tail spin, especially when it came back so aggressively after the first ablation. Having to stop pembro, which I had viewed as my big chance, due to the toxicity issues, it felt like the end was nigh.
But throughout it all the rational side of me kept going. Kept finding the positives. Scans after the second ablation remained NED. Now 2.5 years NED with no further treatment. I am not sure I will ever completely lose the fear it with recur, because I do after all have a metastatic diagnosis. I have entered into quite interesting discussions about when and how the level of surveillance can be turned down. I think it would help me to reduce scanning frequency as it does become an anxiety trigger. Mostly I live quite well in my ‘new normal’.
Mentally it’s tough at times but it does get easier over time. Logically the longer I stay clear the more the risk of recurrence reduces. It’s not being suppressed by anything and it was clearly very aggressive. I work on the basis pembro plus the ablation has been a de facto cure for this supposedly incurable situation.
Thank you so much for sharing this, it’s an incredibly helpful and hopeful perspective.
I think in the absence of anything i can actually do about the cancer, i keep jumping on statistics to try and read the runes and reassure myself about the future. But of course, no one can predict what will happen- if i had a 90 percent chance of cure, i could still end up being in the 10 per cent with recurrence. And vice versa - even if the outlook was statistically poor after treatment, it doesn’t guarantee that it will be for me.
Thank you for sharing your treatment journey and for giving me that perspective. It’s incredible that you are able to live pretty normally, and so good to hear a hopeful story.
Hoping to join, to share experiences and advice on the scary road ahead.
I was recently diagnosed with TNBC grade 3, and will have 12 weekly sessions and started with Paclitaxel/Carboplatin/Pembro last week. Although I’ve been reading up about people’s experiences, and managing my expectations, I’ve found it very difficult already and it’s only my 1st week! I’m struggling with the fatigue and the general feeling of being weak. Were others able to get in some good days before the next round came the following week?!
Welcome (sorry you have to join though, it sucks!).
I found my weeks with carbo really tough- nausea and basically bed bound sleeping on and off on day 3-6. In my first cycle i remember being worried that i would be wiped out for the whole 12 weeks. But i coped with the weekly paclitaxel a lot better, just a little tired on day 3 but otherwise fine to go about my usual stuff.
The carbo weeks got easier too once i got better antisickness meds, and psychologically it was easier once i knew when feeling crap was going to end.
Good luck- it’s a rough road we’ve all found ourselves on, but this forum has really helped
Thank you for that little ray of hope it could be easier when it’s just the Paclitaxel weeks, and once I know the routine. Days 3 and 4 so far have wiped me out.
I’ve also been given the filgrastim injections for 3 days, and been ok with them in the evenings with the clarityn and paracetamol to help, although the bone pains do suddenly wake me up in the middle of the night!
Thanks for the support and advice from everyone here x
Its like I’ve just adjusted to the rhythm of the weekly doses and finding a hint of stability in them after life being turned upside down by the diagnosis and now life is going to change again as we head into EC.
Trying to remind myself that change is the only constant etc etc but I’d really love some guarantees right about now…
Let us know how you get on with your EC. Sending strength x
Welcome @ffrost Really hope you’re starting to feel better from the chemo and have been granted some better days before the next one.
Something that’s helped me with the process is having a symptom log- just a page in my journal each week where i can jot down things like energy level/fatigue, how good my sleep was, if any new symptoms have turned up (or gone away!), what protein I ate, if I did any movement etc so I can try and see any patterns. In some ways, its just something to feel like I have a bit of control but it is annoyingly true that I feel better when I’ve drunk more water and gone for a walk of I possibly can.
Good luck with it all and let us know how you go. X
Just sat here 3 days after my last triple dose and really struggling tonight. Carbo is doing its best to make me feel awful and I’m so scared of EC now.
So so sorry to hear this @sisters_of_percy Sending you the biggest hug and telling Carboplatin to do one and leave you alone- its had its time, now it can f off.
You’re not on your own in this. You’ve got us.
And maybe EC will be kinder but also, if you’ve been struggling with nausea, maybe you can asks for different meds to make it easier? Have you been able to tell your care team how hard you’ve found the triple dose?
Sending healing thoughts and more energy to you xx
Thanks so much
I didnt get to see my oncologist last week, I saw the registrar and told him how rough it made me last time and he said it was on me to decide about dose reduction…I panicked and said I couldn’t answer that so we proceeded as normal and here we are again
Need to learn how to stand up for myself in EC a bit more!!
Thanks for the journalling tip @leotee13 that is definitely something I’ve started doing. I also find extra water and walks help especially with the heaviness in my legs!
@sisters_of_percy sorry to hear the latest triple dose has knocked you out, hope you’re feeling better this morning. Are you finding the side effects cumulative? How many weeks have you had? I only started with my first triple dose last Thurs and found days 3-4 were the worse, got weepy day 5 and today some sort of normalcy! We can get through this!
@sisters_of_percy Urgh! Its all very well being given a choice but you’re not a trained oncologist- how are you supposed to do a risk analysis on dose reduction on the spot with someone you don’t know? So sorry that you weren’t enabled to make an informed choice.
I know its more effort that you probably don’t want to have to do but can you ask to see your oncologist again soon so you know where you’re at going forward?
@ffrost water and walks, truly its the simple things.
This is my last cycle of pac/pembro/carbo. I’ve done 10 weeklies now.
The first 2 triples were a bit pants but I was over the worst by Tuesday. The last triple knocked me over until day 6, but I had a load of port drama that week as well which could have contributed. Though my symptoms are still the same this time around.
Pac only weeks have been mostly fine, infusion day and day 2 are fine, with side effects like taste changes and being mostly “off” present on day 3/4 and thendays 5-7 being manageable and normal.
I usually get weepy on day 3 regardless of single or triple. Had some massive massive crying episodes last night!
I always get weepy too! I feel like it’s not mentioned enough as a side effect of chemo/steroid but I really do have a noticeable mood dip the whole week after chemo.
New here after being diagnosed with TNBC at the beginning of September, 1 month tomorrow to be exact. Waiting for my 1st oncology appointment to discuss treatment in more detail.
Incredibly anxious about it all, think it’s more the fear of the unknown if I’m honest,
Any useful information or tips with what’s to come I would really appreciate it!
Sorry you need to be here but since you do, welcome!
I was diagnosed back in November 2025 and from my own experience and from talking to other patients, I think I can safely say that you’ll feel a lot better once you receive your treatment plan. Did they give you a timeline as to when your first oncology appointment will be? I’d always recommend anyone chase that up with their breast care nurse if it starts to look like it’s falling outside of the appropriate timescale.
I’d also say that while it definitely offers a lot more stability to have that plan going forward, there are things that can change over the course of the treatment and a lot of how it all goes just depends. A flexible approach with an open mind can go a long way in this journey!
I’d also recommend being proactive about your own care. So for example if something doesn’t seem right say something, don’t be afraid to ask the same question of different people to get different perspectives, keep notes on things you want to bring up, chase things up if need be etc. You will deal with so many medical professionals over the course of the treatment and the one consistent person at all your appointments is you so make sure you are an active participant rather than just going along with it.
I hope all goes well and if you want to share further, please keep in touch and let us know how things are going. x
Thank you for your reply. Lovely to meet you, shame about the circumstances!
My first oncology appointment is Monday 5th so hopefully will find out then the plan and when it starts. Like you said I think I’ll feel better once I know the plan and everyone I have spoke with has said this time between diagnosis and oncology is the worst and they were right.
Thank you so much for the advice! I really appreciate it, did you try cold capping with chemo? I’m going to try but have heard mixed feelings on it
Hi @vickchamp welcome to the group! Im 38 and was diagnosed with tnbc in june, a big tumour and in the lymph nodes. Big shock, as it must have been for you! Ive got two little kids, and no family history of BC so it came like a bolt from the blue.
Have just finished 12 weeks pembro (immunotherapy) and paclitaxel/carboplatin and about to move onto EC. In my experience (everyone is different) the x3 treatment weeks were tough and i was ‘off grid’ mainly sleeping for about 5 days after. However the paclitaxel only weeks were much more manageable for me and i was basically able to carry on as normal. Waiting to see what EC brings! But at least it’s everyone 3 weeks which gives me much more time back, and less time at the hospital .
Ive been cold capping and so far, so good..ive had a bit of thinning but no one would ever notice. I find it a bit uncomfortable and it does chill you through, but ive been grateful that it’s mainly worked so far. Im mainly doing it to try and stay a bit more ‘normal’ for the kids. And at least if i lose it all now, we’re going into hat season!
Shout if you have any questions. It’s been a very steep and unexpected learning curve for me. Have found the support of other women in this boat- both here and in real life- completely invaluable. I’ve gone from feeling completely alone- particularly as im in my 30s so cancer was very unexpected- to one of a surprising number of resilient women who have had this shit thing happen to them out of the blue. Xxx
Sorry to hear of your diagnosis. It’s such an anxious time waiting for the treatment plan, but once you’ve had the meeting with your oncologist it does somehow feel better, knowing what’s to come so you can mentally prepare. Like you I was recently diagnosed with TNBC in July, aged 45, and unfortunately it was also my second primary cancer, so it was a double shock having recently recovered from a separate different cancer diagnosis 2 years ago.
It felt like ages before my treatment eventually started, I had a 3 week wait following my oncologist appointment, but my anxiety did reduce once treatment started caused by the fear of the unknown. I completed my 2/12 weekly Paclitaxel infusion today which went ok. I did struggle with side effects after my first week of the triple dose (Pembro/Pac/Carbo) but seemed to follow similar patterns to those here who have shared their invaluable advice. This forum has been invaluable for the advice and support, and helps me feel less alone in this long journey. Please reach out if you have any questions x
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