Hi. I got tagged into this by accident, I think! I had EC and then Docetaxel and had terrible bone pain after the first round of Docetaxel. I felt like I’d been trampled by a herd of cows! Hopefully your pain has subsided by now, but the oncologists reduced the dose by about 20% for the next rounds and that helped a lot. Good luck!
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Looks like that was my bad @flojo, apologies!
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No worries! I don’t come on here very often these days. Best of luck!
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@sisters_of_percy I’m Thursdays at the moment, but after cycle 2 they’re hoping to move me to my local (smaller) hospital, then I will be on Fridays. Single Pac for me too this week, PICC line going in next week, only 2 infusions down and both times they have had trouble getting a cannula in 
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Hopefully you’ll be more comfy with the picc, I have a port but my friend at my gym has a picc and has been absolutely fine with hers xx
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@sisters_of_percy that’s reassuring to hear, I’m a bit worried I may dislodge it or something, does it stop her from doing much? xx
She does bodypump on her good weeks after EC! Lots of overhead presses- she’s incredible!
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Wow! That’s something to aim for! I do Pilates at home and was worried the overhead stretches would dislodge it, but obviously not lol
If i see her, ill ask her how long it took hers to heal.
Also yay for small local hospital for your chemo. I go to mine rather than the main hospital and its lovely. So much easier and less stressful
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Thank you! Yes I’m hoping it’ll be easier, the main hospital has a cancer unit, I don’t know what our local hospital offers instead, but it will save at least 1/2hr travel each way, and free parking!
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I’m at the other end of treatment to everyone else and my chemo and immuno ended in Jan before my surgery in Feb. Following 23 radiotherapies (phew!) I’m now on the 5 x 6 weekly Pembro s/c injections. I’ve almost forgotten about the joy (not) of steroids and the horrible white blood cell injections you do at home after EC. They changed mine to the (more expensive) single injection because I was crying all night with the bone pain with the other version. Like severe toothache in my legs and hips - just awful! So you will get through it and you must phone your BC team with all your symptoms. My team esp my oncology pharmacist have been amazing and kept adapting my regime when I got hepatitis. Just being on Pembro alone hasn’t been bad at all thank god.
Drinking lots of water and sucking ginger travel sweets (from hospital gift shop!) helps with nausea. I also craved salty stuff so got through a lot of marmite crisps!
By Xmas I’ll just be on the Ibandroic acid and Adcal tablets so I’ll be having a BIG drink to celebrate finishing all the hospital treatment (fingers crossed).
Hope you all manage to have a restful bank hol wkend xx
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Hey team, hope everyone’s doing ok.
Also TNBC, diagnosed in June, started Pac/Carbo/Pembro at the end of July. First 4 sessions were fine, just felt more and more nauseous on the Tuesday (my sessions are Monday).
But then I picked up an infection in my port- cue high fever, trip to A&E and being hospitalised for 5 days. It was sepsis, caught early enough, but as it was from my port, it had a direct line to being pumped round my body by my heart… Missed week 5, fine.
On antibiotics, felt much better, went in for week 6 and BAM. 3 hours after my infusion I was back in A&E with a fever and my blood pressure dropping off a cliff. 4 more days in hospital.
I’m out now but feeling really weak and also scared that something like this is going to happen again. Its the sickest i’ve ever been and its really shaken me. I’ve been allowed to miss week 7 yesterday to try and build up my strength, which I’m grateful for honestly, as I don’t know if I could have taken another dose at this point.
My oncologist has also taken carboplatin off my treatment plan because apparently you can develop an allergy to it on week 5 or 6 and that it can cause fever. Has anyone else heard this/had this?
I’ll do what i’m told, ofc, and want to get to the end of the treatment plan but god, it feels like it already been so hard and its still early days. Any advice on going again, even when its been tough, gratefully received.
Lx
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Hi @leotee13
Just dropping in to say how sorry I am for you. I think we are at similar points in our journey as i started end of July as well.
Its such a long slog, you’re right. Like you I am grateful but worn out.
I hope your team come up with with some tweaks to get you through the next few weeks. They want you cured but they dont want you to suffer.
Hugs xx
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@leotee13 Youre a bit further ahead than me and I’ve only got 4 cycles of Carbo/pac, followed by 4 cycles of EC, I wonder if this to avoid becoming allergic to the Carbo?
I’m sorry to hear how you’re suffering and I hope that you are feeling better by now xx
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Hey all.
I had my third cycle of pac/pembro/carbo on Friday and it’s floored me. It’s day 5 now and I’m still queasy as hell, my mouth is still in the curdled bin juice phase and i am exhausted (partly due to hot flashes and night sweats keeping me awake).
My last triple was grim but not as bad as this. Is this normal? With chemo being cumulative and all.
Does anyone have any tips for getting through the carbo? I have one left and im worrying already. If this is a preview for EC I’d like to opt out ha!
I’m also worrying about my single Pac on friday as my port may have a clot and I’m waiting for an ultrasound appointment and I’m now on blood thinners as a precaution. The idea of having more infusions through a canula is distressing
If anyone has any tips for coping with carbo I’d hugely appreciate them
Xx
Hey! Yes carbo is my nemesis too, am so ill on those weeks. What antisickness are you on? I take aprepitant on those weeks and it does keep the sickness at bay usually.
No tips for the tiredness though, i usually write off about 4-5 days where i know i wont be able to do anything normal. I get really spaced out too, and generally not with it.
Also hoping EC isn’t any worse than this!
Hi my daughter is week 6 of weeklies today. So having a celebration breakfast before treatment today. She’s only 19 and has triple negative breast cancer and we just been told she has TP53 LFS gene mutation which means she has a lifetime cancer. She is a tower of strength and an absolutely warrior which makes me so proud but so sad at the same time. Wish I could scream and cry out loud. How the heck do I hold it together, everyone at the hospital and Maggies are lovely but I’m struggling with all the “nice” and strength based support. Wish I could take it for her 
cant look at myself in the mirror, wish they would take my boobs when they take hers but its not an option I’m surrounded by people I love and who love me but feel so broken and alone. My daughter is my best friend, she is my mini me, I am following her lead and supporting her through every emotion but need to get this right. Just breaking it down, taking one day at a time and celebrating every milestone.
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@mygirl no advice really? Just wanted to say that it’s everyone’s worst nightmare, it’s difficult, but maybe acknowledge the bad and take each day as it comes. My heart goes out to you 
xx
I’m on ondansetron for the first two days after infusions as a preventative and so far ive had no actual sickness just queasiness. I have domperidone to take as a curative to take if i get sick.
I hate giving in to this and staying in bed. I was going to allow myself duvet days for EC but not this phase. Bl*ody carbo. Bl*ody blood clot. Bl*ody TNBC.
My third cycle of the Pembro/Pac/Carbo was notably worse in terms of after effects than the first two. Really bad fatigue, horrible mouth taste, acid reflux, feeling sick but not being sick, feeling down and weepy. It lasted the whole week and I still felt a bit rough when I went in for the next Pac treatment.
In the spirit of misery loves company, I hope this makes you feel a bit better! 
x