Sept 2025 chemo starters

[dizzy3]

@anim4l i had some cramps in my 1st cycle (3 weekly Phesgo, Docetaxel & Carboplatin) and a couple of instances of diarrhoea but luckily no nausea. When I mentioned it to Oncologist 2 days before 2nd cycle be put me on daily Omeprazole which has helped. No more cramps but I was still getting the odd episode of diarrhoea. As advised, before I started chemo, i take Imodium (loperamide) as soon as I have an episode and that does the trick.

During 3rd cycle I had 4 isolated episodes of diarrhoea. When I mentioned it to Oncologist prior to 4th cycle he said as they’ve not been in the days immediately following chemo it’s not specifically drug related but suggested it might be chemo induced lactose intolerance and that’s when he suggested I try a dairy free diet. I cut out milk, yogurt, butter, cheese & milk chocolate but haven’t stopped eating all biscuits etc that have milk products listed lower down their ingredients list. It has helped. When I got greedy and had a few small chocolate brownies at the weekend I had a bad diarrhoea episode with sweats and nausea so I’ll definitely be staying off dairy for the rest of my treatment!

On Monday (prior to 5th cycle today) the Oncologist explained that 15% of patients get chemo induced lactose intolerance. Once chemo if finished I can try to reintroduce dairy, it may be temporary or I may have longer term issues.

Definitely discuss it with your Oncologist and see what they suggest.

Good luck getting some answers.

[dizzy3]

I always say my steroids (dexamethasone) don’t affect me too much but they obviously do. I’ve been unable to get back to sleep for 2 hours after waking for my usual nightly wee. I resisted getting my phone or iPad out for the 1st hour, then gave in! Will try to sleep again now but knowing my luck I’ll just drop off before the dog wakes at 6:30! Usually that not a problem as I let him out and feed him then go back to sleep for a couple of hours, but I can’t today as need to be up at 7 to leave at 7:45 for chemo! Hopefully I’ll get a snooze during chemo, I think I’ll take my daily antihistamine this morning, rather than this evening, and see if that helps make me drowsy!

I hope everyone with treatments this week is doing ok. I had a few hours of uncertainty after Monday’s bloods as to whether my chemo would happen today as my neurtophils were low on the instant test. Luckily by the time I saw the Oncologist 2 hours later the full lab results were through and the level had been amended to 1.5 which he said is the cut off to be ok, still below the 2 it’s meant to be. A bit worrying as I seem to be on a downward trend, even on 7 Filgrastim injections each cycle, 1 was 1.6 prior to 4th cycle. I’m already expecting a concern again for my last cycle in 3 weeks time.

[cathie2]

Hello @poptart good luck with your paclitaxel in January.

I am on the same regimen as @emsd2025 I am triple negative too and just completed 12 of 12 weekly cycles of paclitaxel + carboplatin, with pembro added every 3weeks.

As @emsd2025 mentioned pembro is only added if the tumor is over 20mm. Mine was 23mm reduced to 10mm after 6weeks treatment.

Here is my routine which is pretty similar.

I take paracetomol 30 mins before appointment time, they said this helps with the cold cap – but maybe you do this already?

Premeds: Steroids, anti sickness – both tablet form. Piriton given by injection into canula.

Cold cap goes on for 30 min pre cooling.

If it is a pembro week, they start the pembro (30 mins) first once cold cap is switched on as hair is not affected by pembro.

I use the cold mits for neuropathy caused by the paclitaxel. I am lucky as my hospital provide them.

15 mins before pacli is started, cold mits on hands and feet. I asked about compression socks but my hospital did not use them. So I only had the cold mits. I wore a very thin pair of socks on hands and feet.

Depending on where my canula was put in, sometimes the foot mit was better on my hand as it fit easier.

Paclitaxel runs for one hour.

Cold mits stay on for 15 mins after pacli ends.

Cold cap goes into stage 3 at the end of pacli and runs for 1.5 hours after pacli ends.

Carboplatin runs for 30 mins. (does not affect hair)

I then just have the last 60 mins after carbo finishes of cold cap only.

In between each treatment is a short flush.

They usually time the last flush very slowly to coincide with the end of the cold cap.

I am sent home with two days of steroids, two tablets twice a day. Plus two days of anti sickness, one table twice a day. For Day 2 and Day 3.

Plus the lovely Filgrastim injections, once a day for 3 days. Day 2,3,4

Side effects have been OK. My treatment is on a Monday. I found I had lots of energy Tues and Wedneday.

Thursday was OK. Friday was typically a ‘spacey’ day for me. Not firing on all cylinders but OK.

I probably had about 3 or 4 weekends where I was wiped out on a Sunday.

I did start with a rash at week 10 and 11. Evening of treatment day. On my knees and elbows that spread on legs, arm and torso. But with antihistamine and cetraben cream, it was gone within 24 hours. Thhey prescribe steroid cream but I have not needed it.

They said it was pembro related but after hearing about @story1 and reading up I think it is pacli related. Weird that it started so late in the treatment – but who knows, we are all affected differently. The main thing is it was not a major issue and cleared up very quickly. Hospital said very specifically to use piriton as that is the antihistamine they give me in hospital. The fact that it is the one that makes you drowsy really helped with my sleep – so there was a positive to it

I am so sorry that nobody can go in with you. We are allowed one person. The fatc that my hospital provide the mits is so helpful. I live about 1.5 hours from the hospital so would have an issue keeping them cold if they did not provide them for me.

I have a set of mits bought on amazon that I have not needed. I am happy to send them to you so you have a spare set that you could swap in if that helps. Could they let your husband bring them into you or he could hand them at the door? Let me know, just DM me and I can post them to you.

Hope this info helps, it is amazing how much we learn from everybody.

Next Monday I start EC. How did you get on with EC side effects. Were you on 3 weekly?

Did they have much impact on you or did they kick in a specific times on the 3 weekly cycle.

How was your hair loss on EC? And sny tips to share for the treatment?

I completely understand the anxiety changing from one treatment. It’s like we are starting over again. Hopefully you will have some reassurance from here going into the next treatment.

@anim4l beautiful wreath. I wish I was talented and had an eye for making something like that!

@dizzy3 Hope you got back to sleep. steroids kicked in for me today hence the early and long post!!

Good luck to everyone going through treatment this week.

[emsd2025]

Soo happy you’re done with pacli @cathie2

[poptart]

Thank you @cathie2 - that’s all really useful to know.

It’s so daunting starting a new chemo drug, it’s like starting all over again and the initial anxiety and worries come flooding back.

Thank you for the very kind offer of the cold gloves but I have three pairs already! My lovely husband knows how worried I am about neuropathy so he went a bit crazy on Amazon and ordered extra sets to make sure I stay cold!

So I’ve now finished EC. I was on a dose dense schedule of four, fortnightly cycles.

On infusion day, steroids and anti sickness tablets are given as the cold cap goes on half an hour before.

The main difference with EC is that a nurse physically sits with you and pushes the meds through (rather than on a drip).

It takes about 45mins. The cold cap then stays on for another 90 mins.

The Epirubicin is a bright, clear red colour drug, so be aware that your urine will turn a pink or red color for a few days after treatment, which is a normal and harmless side effect. My top tip is to drink as much water as you can in the first few days to flush it out of your system, as it can irritate the bladder.

I was sent home with 3 days of anti sickness tablets and steroids, plus seven Filgrastim injections for days 3-9.

The first couple of days I was wired and couldn’t sleep much due to the steroids, but then I crashed around day 3 and spent the next few days in bed with no energy. I didn’t feel ill as such, just completely exhausted and a bit lightheaded. I started to feel a bit more normal around day 8-9.

I did suffer with heartburn and indigestion quite a bit, but Gaviscon helped. I got it prescribed from the doctor as it costs a fortune otherwise.

Hair loss wise, I had the most shredding in between cycles 1 and 2 and it’s thinned quite a bit, particularly around the sides. But so far I have been quite lucky and the cold cap is definitely helping.

I hope you find EC ok. I think it has the reputation of being tougher than Paclitaxel, but in my experience it was ok and very manageable, but obviously everyone is different.

[whataloadof]

Thank you for sharing this reflection. I’m in the December starter group & had my first EV on Monday & the lack of sleep & dizziness has floored me a bit so hopefully better days are ahead before the next round x

[story1]

Hi everyone I dropped out there for a while, I crashed spectacularly but today is day 9 of EC and I’m much stronger and out of bed. What I would say is like @poptart i never felt ill even when I was at my lowest contemplating A&E, but the fatigue was brutal, I could feel my body depleted, heavy arms, shaky legs, hot sweats. For me I’ll take it over paclitaxel, Carboplatin and keytruda any day. I’m triple negative too @poptart and my tumour was 3.5 cm (last US 3 weeks ago showed it’s now under 1cm. One before that at about the 7 wk mark, it was 1.6.) This was my first EC and like @cathie2 at the end of pac I’d started with rashes. My main side effects were swelling and inflammation. 1 bout of diarrhoea and I went gluten and lactose free, it worked. Rash has now gone too. I’m cold capping and still have my hair. My routine is pretty much the same as the others time wise.

At least I know now what my EC routine is going to be- severe crash day 3! I also think it’s an accumulation isn’t it? We’re all so depleted now, I feel as though my poor body is just hanging in there. It’s great to catch up on everyone’s news, sorry not to reply individually I’m knackered!

Rachel xxx

[emsd2025]

Ugh @story1 sounds brutal! Are you having Pembro with your EC? Last pacli just done

[story1]

Ah well done @emsd2025 !!! What a milestone!!! Yes I’m continuing with Keytruda with EC then I understand the deal for triple negative is 6 months of Keytruda after surgery too. Of course we know this can change when they look at what they take out, I’ve got a marker in there for surgery and I’m hoping it will be a lumpectomy now bc of genetic results, did they tell you yet if you are doing EC? I thought with tnbc they don’t fuck around, complete the course etc, but everybody gets different advice. I know keytruda is for stage 2&3 , will you be on it post surgery too? Judging by all my pac symptoms disappearing I’m assuming I’m doing ok on Keytruda but obvs that can change quickly!!! Xxx

[anim4l]

I saw the oncologist today - for the first time he didn’t tell me I’m looking really well - he asked me if I feel well enough to do chemo on Friday. I told him that even if they had to stretcher me in I’d be completing the chemo - he responded that it’s a balance between being committed to completing the treatment and ending up hospitalised

He’s ordered a stool sample to check that I don’t have an infection in my colon causing cramps and diarrhoea .

It makes sense that as I struggled with mouth ulcers on EC that I may have ulcers in my colon on pavlitacel

He also told me I won’t be back to work before the summer! As I don’t work in the school holidays I think that means realistically it will be September 26.

He’s booked on my surgery for mid march , I’ll then have between 10 -20 rounds on radiation. Then he’s expecting to put me on a CDK 4/6 inhibitor and 10 years of tamoxifen.

[molly.m]

Hi ladies.

Had my chemo yesterday, it almost didn’t happen because of the neuropathy in my fingers and toes. They would have liked me to delay until next week, but that would have floored Christmas with my little miss. Instead we went ahead but they will be reducing my final dose in Jan. Managed a walk today. Bloomin forgot to take my last 2 steroids tho today until 5.30 I hope I can sleep because I’m knackered now. Tongue has started to tingle and feel weird again and things are already tasting off. Still haven’t had a single bit of contact with my oncologist since this all started in sept. Tomorrow will be the start of my sleepy days.

@dizzy3 it all effects us in a variety of ways doesn’t it. I havent tried any dairy free milks yet. It’s a strange one because even tho my taste buds change I dont actually like anything I previously didn’t like before. I was hoping I might be able to force feed myself healthier items but my body said no aha. Hope your feeling ok after your Chemo.

Thanks @cathie2 nothing advised apart from delaying another week, but I went against it as for now my fingers eased off. Just been a couple of toes that stayed numb but I can walk ok. Next and final round will be reduced dose. Congrats on the end of pax/carbo

@story1 oh gosh Rachel that sounds scary. Glad your doing better now. I had something similar last round. Almost passed out on the loo. Had awful pains, hot and cold flushes, thought I was going to throw up. Had to hold on the the back to cool myself down. Was ok straight after so just lay down and went to sleep.

@anim4l your wreath looks lovely. Glad your ecg was ok and your back home. Hope all goes well with the tests. And fantastic that you have your surgery date already. Hope your daughter is having a lovely time away. My little girl will be with my mum for a few nights soon while I’m on my bad sleepy days.

@buggeringon I haven’t tried anything ginger since ginger biscuits didn’t go down well. Managed a little ginger and lemon tea, going to have some more this round in the mornings. Aha he can’t smell properly so doesn’t know which one it is. Ive told him Im fabreezing all his clothing and coats. I’ll give that a try with the massaging. I need to keep on top of hydration, just hard when it all tastes awful.

@emsd2025 thanks. And same I keep popping on to see how your all doing and your all amazing, so glad to have you all around.

@bellbert Hi Jane. Hope your doing well, glad your Ec is going ok. And it does, just being able to see people in person and get a little normality. It goes by so quick tho compared to my bad weeks.

Sending love to all for upcoming treatments. And hope all are doing ok that have had it this week xxxx

[emsd2025]

Hi @story1 so good at least the pac symptoms disappearing! So I was expected to do EC but as my MRI showed a complete response they sometimes bring surgery forward and skip EC or do it post surgery if required - I think based on some practice but my oncologist said it depends on whether the surgeons go for it. MDT is today so hopefully I’ll find out tonight or tomorrow. Not knowing is scary. Yes I think I’ll be a lumpectomy too and then keytruda but not sure how long for - I think can be up to a year potentially. Hopefully my liver plays ball! In other great news my mum Is finally out of hospital and recovering at home

Hope you start to feel better soon @anim4l @molly.m so annoying about the tastebud

Hope you’re doing ok @bellbert @buggeringon

[bellbert]

Morning all, I had weekly Paclitaxel number 5 on Monday. Feeling ok, just the nasty red rash on both cheeks and a few spots on my chest - been given a prescription for a stroner anti histamine in case it starts itching again…

Hello @anim4l , great news on the ECG and fingers crossed the sample will not show an infection in your colon. Love your door decoration, never thought of using a potato to put the greenery in, I am going to steal that idea

Hello @dizzy3 , the increased lactose intolerance makes sense, I normally have to stay away from it anyway, but I always give in to little treats etc, but find these now play me up, now I know why, so thank you:)

Hello @cathie2 Hope you are getting some rest today. Congratulations on finishing Pacli.

Hello Rachel @story1 , hope you get some energy back soon. EC is a bugger for sapping energy.

Hello @emsd2025 , congratulations on finishing Pacli. Fingers crossed the MDT meeting goes in your favour. Lovely to hear that your Mum is home and recovering well

Hello Ailsa @molly.m , great news that your chemo was able to go ahead, so that at least Christmas will be a bit better.

Hello @buggeringon , hope you are doing ok.

Good luck to everyone who still has treatment coming up this week and I hope that those who just have had it, improve quickly.

Love to all, Jane x

[dizzy3]

Wow you ladies are so good at keeping track of everyone and tagging messages, my concentration levels aren’t quite there!

My chemo went well on Wednesday, i even managed to avoid a cold cap headache, so that was a lovey bonus. I’ve been ok since. I don’t seem to have very defined days of different side effects, but my sleep does seem to be affected by the steroids. I’m on 3rd night of not managing more than about 4 hours sleep at a stretch. Hopefully Friday night will be better now that I’ve finished steroids and I start 7 days of Filgrastim.

My only niggle today has been occasional pain with my PICC line. I think it’s just the tubigrip catching on the securacath or pressure near it. I’ll keep an eye on it and call the chemo helpline if it keeps happening.

I’m so sorry to hear about all the pain some of you are suffering - let’s just hope it’s because the drugs are busy working on blitzing the cancer.

Sending you all lots of love and support.

[story1]

Morning everyone hope everybody is doing ok, Ailsa @molly.m my heart goes out to you, your sickness and mouth issues sound awful, sending hugs, how are you now after last treatment? Will you get an appt with onco after this round perhaps? They’ll want to discuss your amazing MRI result that you had after number 3 to discuss next steps? Sometimes it feels as though we’re out of the loop and we don’t get told the plan as soon as we want. Have you asked nursing team?

@emsd2025 that is wonderful news about your mum! And that’s great for you so you’ve got 1 less thing to worry about, hope the MDT meeting went well and you’ve got a solid plan to move forward, the worst bit is always not knowing isn’t it? When we’ve got a way forward we can focus on that.

@cathie2 how are you after your last pac? When do you start EC? Hope Christmas is clear for you and all of us xx

@dizzy3 hows your picc line? @anim4l good luck for treatment today and hope your colon results ok? You’ve got a solid plan there which I’m sure seems such a long journey. I remember when I was diagnosed the breast surgeon saying we’ll be seeing each other a lot over the next few years thinking what the hell is he talking about? I had no idea how long treatment and recovery would take.

I’ve woken up quite perky today! A nice surprise! I’m not bloated and I can feel energy in my body, I’m day 11 from EC so that fits with the classic pattern I guess. I’ve decided not to go on my night out to Cambridge tonight. I think I’d need the wheelchair and it would be too much. Instead, me and hubby are going to drive to Southwold tomorrow so I can see the sea. We’ll walk on the beach and have a nice lunch if I can find anywhere gluten free. I’ll get some bigger tops too, all my clothes are now too tight, anyone else carrying this awful chemo belly? I know it’s common but holy fuck I feel like a blob. I’ve got away with baggy jeans and cardis but now my tops are tight and I have several chins. Sorry to bang on about it @molly.m when you have the opposite problem, I’m not eating much either bc it’s uncomfortable but bloody hell im struggling to look in the mirror… keep telling myself its the least of my worries, get this sucker shrunk that’s all that matters…

@buggeringon @bellbert hope you’re ok. I actually wrapped some Christmas presents yesterday. I’m going to miss Freddie so much but he’s having a blast skiing and he took his bosses kids out (4&6) and they had so much fun. I’d rather he was busy! The thought of skiing this time next year keeps me going, also I’ve got 3 books coming out next year, not that I feel like writing atm, I’m going through a sulking phase where I hate everything, perhaps I could channel that into a killer with no fingerprints!!!

Love to all, hold onto the things that keep you going, I’d love to hear them, it’s difficult to describe to even very close friends how lost this can make me feel but you ladies get it xxx

[emsd2025]

@story1 i love your books so far, I’m quite far into Deep Fear! Still waiting to hear from mdt yesterday and it’s doing my nut! Seeing the sea sounds amazing, I’ve heard Southwold is gorgeous. James is from Ipswich originally and we go to Felixstowe quite often with his family when we visit and I love it! Southwold is on the list - doesn’t Orwell have something to do with it? Hope you’re feeling a bit better @molly.m and @anim4l and you’re keeping ok @buggeringon

We were supposed to be hosting Christmas But the drive will be too long for mum to hunch up so we’re going home and will stay in a hotel for 5 nights so that they can see Ellie on her bday which is the 28th. I went spenny as it’s 2 mins away from mum And dad and I’m so looking forward to a break!

Also for my other triple negative peeps - there’s a speaker’s even with Peter Schmidt in Jan, he’s the main man so might be worth signing up, i have

[story1]

Ooo that sounds good will go and look. George Orwell lived in Southwold there’s a plaque on the pier for him. I think they say he wrote 1984 there. That whole coast is gorgeous, we like Dunwich too. So wild. 5 nights in a hotel sounds lovely!!! And spenny is the way bc it’s not going on anything else right? So chuffed you’re enjoying Kelly! Xxx

[story1]

@emsd2025 is the Peter Schmidt event London in March? It’s only open to UK health professionals and even though I do love a good autopsy I’m not sure they’ll let me in😎

[emsd2025]

Haha I dunno - I’ve got myself a bit of an Amazon habit , but saved lots on dyeing my hair

I love Kelly. Finally got hold of the hospital and they’ve confirmed I can proceed straight to surgery! Should have an appt to arrange in Jan! Nurse was a bit dim and couldn’t tell me whether I can now have my picc out or whether I’d need Pembro first…I’ve sent her away with a to do list. Didn’t know there was a special one in march - this one is just online in Jan I think’

[story1]

Oh @emsd2025 thats AMAZING!!!