May 2026 chemo starters

[alannah172]

Oh wow @wibbles that must be so very scary!!

I’m going to make sure I speak up as soon as I feel anything different as I thought I didn’t need to make a fuss last week, but I think maybe I do.

Thank you for advising how yours is being managed, it’s made me realise I don’t think I’d be over reacting to speak up

I’m feeling more grounded today, less fuzzy, so hoping maybe this is how my side effects present themselves.

I definitely am nervous now, where I wasn’t with EC, but that’ll just make me more aware.

I hope that things become easier for you

[drella74]

Hello @poppy261 and everyone…

Thanks for the shout out! Hope you are fairing well! You seem to be your ‘normal’ cheery cheerleading self! X

I haven’t had much time to devote to posting, but check in from time to time.

I have just finished my 12 weeks of weekly PAC! Soooo many visits to the hospital every week, bloods, infusions, appointments - the weeks have flown!

Tolerated Pembro, Carbo and Pac reasonably well. Developed a little low grade neuropathy. Burnt my fingers and ended up in A&E on Wednesday (just after my last infusion!) so that was a long intense day, but all fine now!

I did manage a weekend away in Anglesey which was defo needed. Apart from that, it’s been hectic with work, running the house, tidying up after the kids! and dealing with chemo! But I am thankful all is relatively well, and I’ve reached the half way point!

I start EC next week (no rest for the wicked!) and have to say I am a bit apprehensive as I think I will defo need to rest more- something I have struggled to do/fit in…which is crazy in and of itself!

@mssteel we are on the same schedule so wishing you and everyone else on EC well! And of course everyone else on whichever regime you are following! Long but necessary journeys… we are stronger than we know xxx

[wibbles]

It really is okay to advocate for yourself, the nurses are very good at telling the difference between someone who is plain scared due to previous adverse reactions and someone is being a PITA. The chemo unit also organised for my DH to stay with me after my third adverse reaction, the space on my unit is very limited so there has to be an exceptional reason for a relative to stay in the waiting room let alone the unit. They also made sure I always had a chair next to the nurses station without others each side and would warn other patients I was exceptionally nervous and anxious for very good reasons and so might not be up for chatting. I think l only managed to talk to one person on my last pre surgery round and that was someone I recognised from the same oncologists clinic who was trying to crochet with a cannula for chemo in place.

My intention is not to add to your genuine concerns, it’s an effort to let you know you are not alone. The chemo nurses do a lot of extra training on top of their nursing degree to become chemo nurses and they continue to train afterwards. They know which drugs can cause adverse reactions and keep a very careful eye out for them. If they know you have had previous adverse reactions they keep an even closer eye and may well bring in another with far more experience to help when you have a future drug. There is always a duty doctor on a unit as the just in case can happen but often its because someone has turned up for chemo who might not be well enough for it. It really is okay to ask the chemo nurse looking after you what they would do IF you have any further adverse reactions. Remember most can be solved with an oncologists help. If like me you continue to have adverse reactions then oncologists will have a plan b, c and d up their sleeves to try. They follow NICE and other guidelines using the drugs known to help most that are cost effective for the NHS to use and can work upwards and use alternatives IF reactions to a certain chemo drug continue.

I will admit I had no idea the 1 in 10 would be me nor that the doctors would not be able to control the reaction due to me having an allergy to Ducataxel and paxitaxel drug carriers. I wish someone had let me know there are alternatives, that the nurses and doctors on duty are there to keep you as safe as possible and continue to train to do so AND your oncologist can be contacted by you via their secretary if you are worried following a bad adverse reaction.

I have now completed the heavy side of chemo with my oncologists and chemo units support that is something none of the nurses from the chemo unit and BCN team ever expected me to manage. I never expected I could manage to get there either only my oncologist did. It is possible to do chemo after adverse reactions but it is still not easy as you can never shake off what if so take what support you are offered and give consideration to any suggestions medical staff make to try and make chemo easier for you to do.

Hope all goes well for you going forward.

[poppy261]

Sounds like a lovely break in Anglesey @drella74 . Its a beautiful place.

Glad Pac etc has been manageable. You seemed full on with it being weekly though. Well done you for getting through all that as well as look after family and work. You are one strong lady.

Fingers crossed EC is not too awful for you. You may be one of the lucky ones, and be OK with it. . Chemo drugs are such an unknown for individual people. But if it is harder, make sure you rest abit more.

Sending love and strength for the next phase with chemo.

[bea4]

Hi girls! Just been Missing in Action whilst getting through Cycle 4 of EC…..not helped one little bit by having a stinking cold and cough generously passed on to me by my husband! No temperature out of the normal range, but it took two weeks to shift. Strangely - though NOTHING is ever ‘ strange’ with chemo, is it? - I didn’ t have the horribly debilitating fatigue I usually suffer with this time. In fact, were it not for the hacking cough I‘d have felt okay, apart from the constantly streaming nose and eyes. Still getting through 7 boxes of tissues a week. I feel like I’ m drowning in snot! Soz, hope none of you were eating!

Starting Pac on Wednesday, if BIG ‘ If’ - the bloods are okay. I’ m doubting this because the cold and cough will probably have destroyed my neutrophils and lowered my haemoglobin levels. We shall see.

Happy to hear some of you have managed to get away with your families for a well - deserved break, and it’ s great to know that you are all coping somehow with everything this blasted regime chucks at us. Onward and upward. The only way to get through it is to, yep, to go through it. We’ re not quitters, for the sake of those who love us, we can’ t afford to be.

Sending you all my best.

[poppy261]

Will be thinking of you on Wednesday @bea4 . Hope Pac is kind to you.

Real nuisance that you get a cold and cough when your last EC actually wasnt that bad. .

If its not the chemo, the germs and viruses get us anyway dont they.

You look after yourself strong lady.

[baldiesrus]

Hello ladies. I hope today is a cooler day for you all. It is lovely and breezy down south…so much so, I needed a coat to go to the shops…..such a nice change….I went with coat as it is threatening to rain . The wind is just blowing the clouds over…we did just have what I would call a sea mist. Nothing like being teased.

Anyway, I have surfaced from my cocoon lol. I have been reading your posts and sending my hugs in my thoughts to you. This cycles has been better…whoop whoop. Still had a few hand and feet issues, but not sure if they are related to all this heat or the chemo. I have got neuropathy in my finger tips and toes again, they hurt less today, so I can type. I no longer use nail polish as I have decided my nails need to absorb the hand creams and lotions, and the polish just blocks that. My hands are now peeling, so my new issue is making sure they are not drying out and cracking…so lots of cream. We win one battle to end up with another.

Started spiralling downwards on day 3 (wed) Not so much pain this time around, and more localised to my legs and breasts, lasted a few days, but painkillers helped, and I didn’t need to take them as often. Also the exhaustion started then too, gradually getting worse. I think I hit bottom day 6(sat). The hot weather and the side effects of the injection kept on giving though. Feeling so much better today. felt like I needed to go out and do stuff….but couldn’t due to eldest needing me to wait in for a parcel…..grrr 1.30 I could finally go out to buy food!! Yesterday all I wanted to do was eat lol . I think it was trying to give me energy for today.

Sorry to hear some of you ladies have had scary reactions, big hugs for you

I am trying to keep away from sick people and I do wear a face mask when in shops or crowded streets. Thankfully I have managed to not catch my kids bugs. I did scowl at my hubby on one of his rare visits home, when he sat next to me saying he’d got a sore throat and was then coughing everywhere. Hmmm. Luckily for him, I didn’t catch whatever he had. Some family members have offered to come and visit for a day, but I have put them off. I don’t know how much energy I have until I have it, and also, I don’t want them to bring germs from another county here

I have an appointment to see a Radiotherapy consultant….so pleased at that. It feels like making progress. I have that appointment on the same day as my next chemo session. Thankfully at the same hospital, else I couldn’t have done it. Hopefully some of you will have also gotten your appointments too, or they will start to come through.

Whatever drug you are having, I hope it behaves and treats you all kindly.

Hmmm I’m off to forage again lol

[poppy261]

Glad to hear side effects have been more manageable @baldiesrus this time round. But also sounds like its still thrown you challenges. Its not easy is it.
Cant believe they gave you a radiotherapy appointment on the same day as chemo though . But as you say, at least it was in the same hospital. So hope it goes to plan.

Cool weather and rain is much needed isnt it. The heat is such a challenge with chemo. My day started cool but got hotter as the day went on. I went for a ride in the car with a friend, so I could have air-con on. See the world, get shopping. Had a Short walk by the sea, which was lovely. Then slept when i got home.

Like you I need to eat often. No chance of losing weight . That was one plus of chemo I was relying on . But oddly Ive lost a tiny 2kg (no noticeable loose clothes​) since first being weighed, even though Ive eaten loads. Even in the middle of the night !!!. Odd…no appetite when I see food, but the hunger is very uncomfortable if I dont eat and can make me sick . So I make sure I have something.

Glad you didnt get that cold from your lovely hubby. . They are so kind arent they .

You do right wearing masks, limiting friends. Im the same. We are so close to finishing chemo, extra health problems are the last thing we need. luckily my friends are happy with texts and phone calls whilst I get through this. Pointless them all calling round, as I sleep at odd times….i.e. when my body says “sleep”. Id find it exhausting entertaining. So I told them it would be a waste of their time. They are all happy with that.

Strength love and hugs

[daffodil_dream]

Hi everyone, sending well wishes and positivity all your way Especially for those going through reactions, having reacted badly to EC I can relate to how unnerving it all is

I’m different from the majority of you as I’m on Docetaxel instead (3 treatments at 3 weeks apart) Funny how we get into a routine with one drug and then have to adjust to a whole new one!!

I’m finding that fatigue is hitting way harder with this one And still have a lack of appetite, so have to make sure I do eat - grazing or small meals helps me not be put off by bigger plates, have to keep energy levels going!

Mind you, I have to keep my chin up and forward to the future - the next treatment is my last chemo I’ll get a couple of weeks recovery before onto my radiotherapy journey!

Let’s keep putting one foot in front of the other, ladies! We’ve all got this!

[poppy261]

Wow @daffodil_dream . One more treatment and you finish chemo . Thats amazing.

When is your last one???

Sorry to hear Doc is hitting you hard with fatigue. It seems very similar to Pac (same family) on that front. I find Pac fatigue equal, but different, to EC. Exhausting. So I hope you are resting lots.

Sorry to hear your appetite has not come back yet, but good to know you are managing to eat. Its such a hard one isnt it. It will be lovely to enjoy food again after chemo.

Do you know much about how many Radiotherapy sessions you will need?. I will be having 15 (every day over 3wks). Lots of travelling every day to a hospital over 20miles away. So hope yours will be nearer.

Sending you love and hugs.

[poppy261]

How did Pac go yesterday @bea4 ..

[want2beme]

Thanks @wibbles wow so sorry u had to go through all that. Very scary indeed. You have been through so much and i bet will look back in time and be so proud of yourself for getting through. Congrats on finishing the chemo. Ive had my surgery and it was alot easier than chemo. Ok first week was a bit uncomfortable but i was so happy to have the big ball of cancer taken out i was so happy.

Im glad to say they are not going to try regular paclitaxel again and are going to use nab-paclitaxel. And its going to to every 3 weeks instead of 2. So that adds an extra 5 weeks to my treatment with the delay. I feel ok about it, just a small niggle deep down that some reaction may happen. But i know the nurses in the chemo unit are fantastic and i see the same few every time i go in, so getting to know them well now. Ive seen oncologist 3 times for no more than 5 mins each. He is a stand in from another hospital so might not be there each time i go back. The chemo unit is located in a different private hospital about a mile away from him, it moved during covid and never went back to main public hospital! Weird set up!

@poppy261 are u in today for number 7? Best wishes to you , and everyone x

[poppy261]

So glad they have moved you to nab-paclitaxel @want2beme . Fingers crossed it will be kinder to your body. But yes, I understand completely, that you will still be nervous until you try it.

My 7th is tomorrow. It was nearly delayed as they were having problems getting bloods via my PICC on Wednesday. Basically there was a jam somewhere. So there was a risk of the PICC needing to come out. Which would have meant a 2week delay. Then another Nurse came up with a really simple idea…plunge the syringe down quickly twice, then pull it fully out . ..abit like clearing a drain pipe with a plunger !!! ….. . Amazingly it worked !!!

So, hate having treatment, hate the side effects, (exhausted with it now, same as everyone) but, in two weeks time I will hopefully be having the last one. Which doesnt seem too far away… im stocked up for an earthquake. So next week I can just “survive” and rest. .

Hope the summer holidays have been manageable for you, your family and old timer furry friend. Hope you got a slight break, to do nicer things, with all the recent problems with chemo. (Positive from a negative)

You do incredibly well. Sending love and strength.

[want2beme]

Thanks @poppy261 you are so good to remember details about everyone. Id need a manual at this stage.

Thank goodness for that nurse getting your picc sorted and save the day. Maybe she did have experience in plumbing . You have done amazing with chemo Being organised for the week after definitely helps, its means there is less to think about for sure.

Summer has been grand, i havent really done anything exciting to be honest but it is nice now that the weather has cooled down.

Funny one, I was wondering why my skin felt so good, so i notice my finger tips are very smooth, so i googled it and read how fingerprints can disappear during chemo! Wow! Im off to rob a bank to help me pay for all the cancer bits ive bought

[bea4]

Good Luck for today, @poppy261 ! Clever nurse, flushing out your drains! She should train to be a plumber, second string to her bow!

And the same for everyone of us on here, goes without saying. Good Luck, I mean, not training to be plumbers

I had my first Pac yesterday. Was petrified that the veins wouldn’ t be up to it - they were fine - that the neutrophils would be down - they were UP, amazingly from 2.6 to 2.8. Worried that SOMETHING would be ‘ off kilter’. It wasn’ t. BP normal, temperature normal, oxygen levels normal. I’ m such a ‘ glass half empty’ gal! And - a BIG ‘And’ - I dont have to do the Filgrastim belly jabs! Yeehah. Pass the 90% chocolate, NOW!

No reaction at all to the pre-steroids, no reaction to the Pac - which I’ve decided to call ‘Paxie- Taxie’ because I can never spell it properly.

I was sorry to hear about your reactions to Paxie, @want2beme , that sounds horrible, as well as unfortunate. We’re so often told that Pac is a breeze compared to EC, but it’ s clear that not everyone finds it straightforward. Did I read that 10% of patients suffer a severe reaction to it, or to the carriers it’ s delivered via iv in? I do hope you’ ll find nab-pac tolerable, so you can get through this phase of your treatment safely.

Now I’ m on weekly lower dose Paxie I realise I’ ve only got 4 days to cram in everything around the home before it all starts again next Monday, with bloods, then phone appointment with nurise, then second Pac chemo at hosptital. So I NEED it to be gentler just so I can get caught up with ‘ normal’ stuff!

All the best, girls, am thinking of you.

[bea4]

Ooo….loss of fingerprints is a new one on me @want2beme ! Great idea about nipping out to rob a bank in order to replenish our dwindling funds, but such a shame there are so few left on the high street to rob!

Anybody kept a close eye on just how much this cancer shennanigens has cost some of us, financially? Maybe we need a new thread on here - ‘ Cancer Made Me Shop’ !

[daffodil_dream]

Thank you so much @poppy261 - it does feel good to actually see the end of the chemo tunnel!! As you said the drugs are all so similar yet different with their symptoms!! We definitely need to make sure we rest - easy to get carried away when we get some energy!

I echo @want2beme, you’re fabulous at remembering everyone’s stages of treatment; very considerate of you

And 7th one for you soon too!! You’re nearly there So sorry to hear about your PIC complications - quite the brainwave of the nurse Glad it did the trick so there were fewer delays!

I’m not currently sure on the number of sessions at the moment, that’s TBC as I’m actually taking part in a trial which hopes to reduce radiotherapy timelines in the future for our fellow patients So I may either have have 5-7 sessions or I’ll be on 15 (I can imagine I’ll fall into the 15 category with yourself!) Journey wise i’m about 45-1hr away from the hospital which isn’t the best, but can at least drive; I’m aware others have it way worse than me for their travel so I shouldn’t grumble really

[daffodil_dream]

That’s actually not terrible idea @bea4 I was just saying to my partner the other day that it can actually work out quite expensive- and the advice on what to actually invest in varies so much depending on NHS Trusts!! My own hasn’t been overly pushing buying lots of things as they are very mindful of costs, which is very good in a lot of ways, but then I’ve also taken on suggestions from others which have been beneficial!

I find it strangely fascinating how different it is for each individual; we’re all part of this big umbrella condition, yet have unique experiences (not sure if that makes any sense?!)

[bea4]

Makes perfect sense, @daffodil_dream ! It seems that no two cancers can be the same, because no two people with one or other of them is the same. We are ALL unique. There has never been another ‘you’ or another ‘ me’ and there never will be. Goes against evolution. And the treatment options are therefore unsurprisingly severly limited to ‘ One size fits all’.

Speaking of ‘Evolution’ - anybody been watching Chris Packham’ s new series of the same name? BBC, Monday nights. Well worth a look. It puts everything into perspective, somehow. Might be worth bingeing on i- player for those times when all you can be arsed with is flopping in front of the telly.

[poppy261]

Ah yes, Chris Packham. I love watching all his programmes @bea4 . He really knows his stuff.

Re Cancer Made Us Shop….great idea. My biggest, hidden, expenses include: extra, specific, food that I need, to recover from chemo; larger clothes (that I didnt want, but did need) for mastectomy/PICC line; higher bills due to being home more; taxi fares when I cant drive my car; V shaped Pillows; freezer bags as I freeze so much; medical items (pain killers, masks, etc); creams etc for fingers/toes/skin; wigs and wig care products; chemo bonnets etc; to name a few . Goodness….i think i will avoid the totalling up

Glad you had no reactions to Pac Bea4 and your bloods were fine. Fingers crossed that continues for you.

Interesting point re finger prints @want2beme . Bit of a problem if you use fingerprint recognition to “access” your own Bank Accounts on Smart Phones, you might need to rob your own bank .. Plus bit of an issue travelling to countries that insist on FPrint recognition to enter them.

Im trying to motivate myself to do last bit of prepping before tomorrow. But am quite happy in sloth mode watching the TV.

Would be nice to have less sessions of Radiotherapy @daffodil_dream . Sounds like an interesting trial. The daily (sometimes very long ) journeys is really difficult for most people, especially for 15+ sessions. And especially just after chemo when we are still very tired.

My issue with my second hospital is…. Parking is a huge problem. They tell you…yes you can drive there but its hard to find Parking. . Slight problem. Plus petrol costs are huge.

However, all you ladies make sure …if you can find a parking space…. Most Hospitals do parking for FREE if you are under Oncology. I only found this out the other week, as my Hospital failed to tell me. . Probably a strategic plan on their part…. But Ive now got a FREE parking Pass. . Same will be for the second Hospital. So save your pennies. Make sure you check this out.

Sending love, strength, and determination to finish chemo. We are all so close now. .