May 2026 chemo starters

[baldiesrus]

Hope the pain killers are doing the job…I think back pain is the worst I will keep an eye out for that.

Feeling good today. No bad reactions to the chemo whilst having it, thankfully…the pre-meds were worse.. a bit like having a glass of wine, but without the pleasure I still have my injections, but only 5 nights not 7, no 3 days worth of tablets though. Really hoping that I won’t get the day 7 and after side effects with only the 5 I like to be optimistic, but it will be whatever it is. Nurse didn’t actually mention any side effects that I might get with this one. Good job I downloaded the info. I di have a runny tum a couple of hours after chemo…but have been fine since, and have been drinking lots of water…get out chemo drugs

Thanks to every one for the well wishes , sending well wishes and hugs to you all too.

[poppy261]

Thanks @baldiesrus . Been a bit of a painful day on and off. Gone down my legs and into my feet. Meds keeping 50% of pain at bay. Hoping it settles tomorrow.

Strange how we all react so differently. My pre meds went without any reactions. Same with Infusion. So I was feeling very positive till early this morning.

Chemo never lets us get complacent does it.

You take care, and fingers crossed all goes well.

[jordx90]

Good morning all

I hope everyone is doing ok been MIA! I havent had chemo for three weeks now due to immunocolitis and am currently back in doing a stint. Was given imixuflab at 9pm last night to reverse the immuno side effects. Will no longer be allowed immunotherapy and they have said as long as my bowel settles il be starting my second cycle on the 20th!

Feel like in a weird time lapse of colitis and cancer at the moment and its making me super resentful towards everything which is frustrating.

Just want this journey done and to be home with my babies living some kind of new normal.

[mssteel]

So sorry to hear this @jordx90.

I know what you mean about feeling resentful. I’ve been mostly upbeat overall since starting chemo at the end of May, give or take the odd day or two per cycle, but last week’s mindset was pretty much “I’m so sick of this!” I’m so grateful to be able to have the treatment, but I think the heat massively exacerbated side effects from the immuno/chemo combo and it definitely hit harder than previous rounds. I had a bit of a moan to the chemo nurse at my last round on Friday, who was really great, and I have a counselling session this week so I’m looking forward to properly unleashing then!

Hope you’re on the mend enough to continue on the 20th. Will you be on the same just without the immunotherapy or have they changed the “cocktail” completely?

[jordx90]

Its so frustrating isn’t it. Life isn’t normal with chemo anyway let alone with colitis and no chemo! I popped to the hospital mcmillan yesterday and have got a session booked in tomorrow at 10:30 so hoping that helps.

Im on the same chemo dose so pax and carb followed by ec however they’ve suggested oral chemo if not a complete response rather than stand alone immunotherapy following everything else. My genetics results are also looming this week so think thats making me feel slightly anxious to. I was also due to start ec in a few weeks but this has now put me back to mid September which again frustrating. I guess its having the no control and the goal posts changing x

[mssteel]

That definitely is a lot to deal with all at the same time - this journey is certainly anything but linear, isn’t it!

I hope your chat with Macmillan helps and I have my fingers crossed for good news for you on your genetics results. x

[poppy261]

So sorry to hear all your frustrating news @jordx90 . I can completely understand how frustrated and anxious you must be feeling. Especially when you have a young family as well.

Its normal to want to scream some days. We are human and its important to be able to say how the bad days are. The side effects are pants. We lose nails, hair, have skin reactions, pain, fatigue etc etc …goodness thats on top of the cancer. All we can do is rest and be kind to ourselves.

But chemo is hard enough without having colitis, and then chemo schedule changed etc. Living in an unknown is tough.

Colitis on its own, is no fun. You must be exhausted. It can really drain our bodies. I really hope it settles down soon..

The good thing is they have so many options with treatment, that they will blend it until they get it right for you. Ive heard of numerous ladies having treatment plans changed because of reactions etc. Some ladies even actively refuse treatment themselves. Not sure I could do that.

But Teams will do everything to give you the best outcome. Its so much more advanced these days. They have multiple options.

MacMillan will hopefully explain that to you further.

All we want is treatment to be set in stone, and to finish quickly, so we can plan our days better. Its hard having to re-think everything. But chemo is such a harsh treatment. It amazes me our bodies cope with it at all.

Make sure you rest as much as you can. I know thats not easy though.

Fingers crossed for your genetic results this week.

Sending you lots of virtual TLC, strength and love. .

[bea4]

So sorry to hear about the set backs some of you have been having. As the nurse I saw yesterday for the post- bloods ‘chat’ said when I gave her the list of my side-effects,
“ Well, we’ re POISONING you, you know!” Very reassuring, not.
She couldn’ t proffer any advice about fatigue, sore eyes or runny nose, just shrugged them off as the typical side- effects those on EC have to put up with. I asked her about my reaction to the filgastrim injection…… ‘psychological’. I give up.

I usually have bloods taken at a ‘Hub’ as I’ m so far away from the hospital, but yesterday was a bank holiday, and ALL the Hubs were closed so I had to suffer the 60 mile round trip. And now I’ ve got to do it tomorrow too. They don’ t contact you if the bloods are okay, but it still means spending my day hovering over the landline and/or the mobile, in case they ring. It’ s now 16.30 and I’ ve heard nothing, so am assuming chemo will go ahead tomorrow. Another day wasted.

Sorry for the mini-rant, not as bad as you’ re going through @mssteel and @jordx90 so sending special thoughts your way. Some days I wonder how we manage to limp through it all, so a good old rant may be just what we need.

[jordx90]

Hi all

I know I need to learn to be kinder really as im usually pretty head strong just think I’m struggling with the mix of everything going on. They gave me the imixuflab last night and today has definitly been better however have to stay in again tonight to be monitored. Have come home to see the kiddies for a couple of hours though which im greatful for.

Anything we all go through is hard on ourselves so be kind to yourself to. 60 miles for bloods is crazy!! I hope your ok! Im back in monday for treatment hopefully!

Genetics were negative! Bittersweet really as im grateful the kids dont have to worry but also its just like well is this just bad luck then! Crazy x

[poppy261]

Im glad you are seeing some good results with your colitis treatment @jordx90 . But hard to have to be in hospital again.

I think chemo, and all that it brings, knocks even the strongest of us down. Its hard having to be kind to ourselves when our main role in life is the strong one who looks after everyone else.

But its so important to rest. Hope your family are coping OK. Sending you an extra hug .

I understand your mixed feeling with genetic test. We want reasons for the cancer dont we. I think there are very few reasons in truth. It seems a lottery most of the time. At least your children can know they are not at high risk. . Thats a plus. Xxx

So sorry @bea4 that your Nurses continue to be dismissive. I think there is enough evidence to show the pains are not “psychological”. That is so insulting, when the pain is incredibly real.

Funny how the pains I had yesterday both Nurses I spoke to said it could be the pegfilfrastim. So Oncology are more than aware how the injections affect people with pain.

However, I think my pain yesterday, was more the Pac as the injections have never bothered me. Again, lots of evidence to show pain is a side effect of treatment and its mentioned on the BCN website. We know our bodies. We need to hold on to that.

I just tell my Nurses…chemo is brutal. The side effects are awful. The fatigue is crippling. Luckily they accept that, and tell me I need to make sure I rest as much as I can, to get through it all.

Most of my Team are very young. Rarely will any of them have chemo. I try and think….if they are not panicking, then I dont need to. But I then curl up in a ball at home and rest. As it is tough going.

You are entitled to rant as much as you like bea4. Everyone is. We cant do this always with a smiley face of “stiff upper lip”. Forget that. I think that is way too much to ask of anyone.

So rant anytime you like. Us women need to put ourselves first sometimes. Just say it as it is. Xxxx​

[daffodil_dream]

Sending you so much love @jordx90 What an additional stress and obstacle for you - hang on in there, we’re all behind you here on this forum

[mssteel]

I know what you mean about having those mixed feelings regarding the genetics results. In my early days of diagnosis, I was quite focused on what had caused it and if I had the gene, this would mean it wasn’t something I’d done. I’m not quite as bothered by this now as I’ve met so many other breast cancer patients in the last couple of months and for the most part, the only common theme has been us being female!

I’m pleased for you that it’s gone this way as there is the potential for further treatments with a positive result and as you say, it’s great news for the kids too! x

[poppy261]

Will be thinking of you today @bea4 with you last EC. xxx

[bea4]

Awww thank you, @poppy261 ! Just got back home. Had to have extra bloods taken for kidney function and magnesium, both of which are in fine balance which can be knocked off kilter by chemo. Better safe than sorry.

Managed to book pre chemo bloods at the nearest local Hub for the next 4 treatments, so that’s something sorted at least.

Feeling okay currently but I doubt it’ ll last long! Nice to get the EC out of the way though.

How are you feeling now, on Pac?

[poppy261]

Well done @bea4 for getting through the last awful EC.

It is such a relief knowing its finished. Glad to hear your bloods will be taken at a local hub. That will make things a lot easier for you.

Yes chemo doesnt half pummel kidneys and magnesium supplies, so its reassuring they are keeping an eye on that also. Some positives at last for you.

Pac is abit of an unknown at the moment. I definitely feel less toxic to EC. The infusion went without a hitch. No woozy feelings as I left. So that was all a bonus.

My worst side effect has been the pain in my hips/back/legs and feet which started Monday. But Ive mostly kept ontop of this with alternating Paracetamol (4x in any 24hrs), Ibuprofen (3x in 24hrs with food). Its easy to want to take more, so Im having to really monitor my intake carefully as they can create kidney problems if I pill pop too much.

The pain tends to come in waves. First day was the worst as it was all day. Then Tuesday was up and down. Today minimal.

Ive still been tired with Pac and needed to rest, but ive not had the total wipe out fatigue that I had with EC. Where I would fall heavily asleep for 2/3 hours at a time. Im needing to rest, have lighter sleeps. Keep hydrated.

My appetite is none existent. But I can still taste food so thats a bonus. I force myself to eat. Lasagne and cottage pies have been good. I vary things throughout the day.

So time will tell. It seems the 2nd and 3rd infusion can create problems with infusions. So Im just going to zone out again, and hope I will be OK.

As you said, chemo is poison, so its never nice for most people. But the more we can manage the side effects the easier it is.

We have to be kind to ourselves dont we.

[wibbles]

Poppy I found the first 5 to 7 days on nab paxitaxel (abraxine) could be increadibly painful. I stuck with a mix of paracetamol, gentle mobilisation physio ( none weight bearing) and using some of the pain reducing positioning shown to me by a nurse helpful. If you struggle a lot do let your oncologist know as they may be able to prescribe analgesics or similar that may help.

Chemotherapy leaves you tired on a good day. Add pain on top and it can be doubly tired so go at the speed your body is telling you to and try not to compare yourself to others on the same regime. I did find overtime Ìt became day 5 and 6 that really hurt so tried to make allowance for that. Day seven post chemo today so it’s been a little bit more doable andI have only had to use paracetamol once. And physio….

[poppy261]

Thats really helpful @wibbles . Thankyou .

Mine has been day 4-6 with day 4 being the worst. So I’ ll need to wait and see what happens at next infusion.

Ive got Oncology appointment on Monday, so I will certainly mention it then. Ive also logged it with 24/7. Im hoping paracetamol and ibuprofen are enough. Im not comfortable with stronger painkillers as I react badly to them. And their extra side effects are not worth it.

Ive been doing a lot of gentle leg/feet exercises . I also found resting one leg on a pillow, relieved pain in my pelvic/back area. Also using relaxation techniques helped a lot, as it was easy to cramp up, and make it worse.

But yes, we need to rest when our bodies say we are struggling. If I fight against the fatigue it makes me feel physically sick.

Counting down the days when chemo finishes. Manic hysteria setting in.

[baldiesrus]

Hi ladies, are hope you are having a good or better day today.

Rant Alert ! Paclitaxel does not like me! I had a sneaky feeling this one was going to be bad for me, given how lightly I got away with the first 3 cycles of EC. The infusion went without a hitch as such, but day 2 noticed my hands were dry…later on the palm side of both my hands were bright red and sore….later on in the night my feet starting throbbing too. I did try all my normal lotions and potions, but they stopped it being dry but not red and sore. I rang the number the next day….as I was hoping to get put through to someone on the chemo unit, rather than whichever ward was covering the emergency number, but I got put through to a random ward. They got me to send pics….very difficult doing a flamingo impression and trying to take a photo of feet.LOL (Have to stand in kitchen to make phone calls because the signal is rubbish elsewhere). The nurse did take pics to the chemo unit to show the specialist nurse. So I did end up with the correct prescription for it (Flexitaol 10%Urea cream). I also had a problem with my picc line…The clip that holds it still was only half holding it….so Tues(day 2) I spent the night keeping my arm as still as I could, as I was worried in case it came off completely. Stressful night in all.

Today is day 4, hands look less red today, feet are still throbbing. Lots of other random pains today, the worse being the pelvic area. Painkillers taking the edge off, but I am very lethargic and feeling shaky. I tend to go shaky when in pain, so as long as my temp is good, I’m assuming I am good…..You know what I mean. I started my injections last night too. Tongue feels like it’s burning, and my lips are tingling….trying to stay on top of that

I now have a chair in the kitchen so I can sit down as soon as I need to. Taking today hour by hour, not wanting food, but will eat something.

The lovely specialist chemo nurse, who sorted me out, was going to contact my oncologist to get my next dose of pac reduced. A huge shout out to the nurses who really know their stuff and give us the right advice, medication and lotions the first time. I know it’s complicated, and we are all different and react differently, but when they get it right first time, what a relief!

Today I do not feel strong, I have cried a little after kids were both out the door. It’s much better to get the bad stuff out rather than bottle it up.. Feel better now. I think I may have to use my mums old mobility scooter to go shopping ( hope the battery is still alive). I’m glad we kept it now, it may just save my bacon

Tomorrow may be a better day

[elastigirl]

oh @baldiesrus whata flip pin mare for you !! Im so sorry to hear this, im sending you a hug, Ive just had my 4th EC yesterday, so currently hyped/insomniac on the steroids for next few days until the Pelgraz bone pain kicks in . Isnt it a f***** joy x

So I’ll be starting Paclitaxel in a few weeks, and Ill be interested to hear your journey sounds like we are a few weeks apart. Out of interest what’s your Pac cycle. Ive been offered 12 weeks of weekly lower dose to minimise the riks of hand and feet neuropathy issues which it sounds like you have. Could you be offered that maybe , lower dose spread over longer to help you with the side effects ? Also did you use cold mitts and feet things as Ive been told they help ?
anyhoo just a thought ,and dont leave the crying just for when the kids are out, sometimes it s ok for them to see mums not OK - you’ll get a big hug from them and that will help x x x x

[poppy261]

Oh @baldiesrus I am so sorry you have had such a garbage reaction.

My feet and hands went like yours when I was on EC. Its really painful isn’t it. . So they gave me Urea Cream which helped a lot. Then the first day after Pac, my hands “reacted” to Urea Cream and became supa sore/blistered between thumb and finger when I tried to use it as a preventative option over night with silk moisture gloves . That may have been my mistake, but Id been told to do that . So I had to stop using Urea Cream and just use moisturisers.

Perhaps Urea Cream only works when the skin is swollen. . Not to use it as a preventative .

My hands settled down after three days. I did use Savlon Gel on the really tender areas/blisters.

Its such a lottery as to what works what doesnt. Almost impossible to navigate.

But painful feet is awful. I can really empathise with you.

Its pants isn’t it.

Ive had the pelvic /back/leg pains. Worse day 4, but on and off day 5-6. Better today. Alternating Painkillers helped but I needed to do gentle movements whilst sitting/resting just to ease the pain. . It travelled down to me feet, which felt odd for a couple of days, and I felt worried going down stairs as I felt wobbly. Weaker.

I was advised Hot Water Bottles but in this heat…that was a No. . The other suggestion was baths. But I cant use my bath, as I have a lower back problem, and cant get out of the bath nowadays. . Plus having a PICC makes that a problem anyway.

Like you, I am exhausted. I cant drive my car yet. What a good idea using a mobility scooter. Hope it works.

Ive found resting has helped a lot.

Re PICC, Ive had to ask staff to cover it with two supa see-through sticky plasters rather than the normal “one”. Ive then had to use micropore surgical tape over the top part, but secure that at the sides with normal plasters stuck onto the surgical micropore tape (which comes off in the heat ). I then wear my silk/cotton shirts with sleeves to act as a loose PICC cover to stop it catching on things.

Sending you an extra hug, love and strength.