May 2026 chemo starters

[mssteel]

You have definitely had it a lot rougher on Pac than I did. I started with the itchy feet a couple of weeks from the end of my adventures with Pac, although you mentioning it now has just made me realise that seems to have died down quite a bit. I did tell my oncologist about it last week and it is apparently a “thing”. The heat in general I’m sure has made the whole process much worse for all of us. I know I’ve done my fair share of crying about it!

I have two more cycles of EC with the immunotherapy drug Pembrolizumab, which is what I had this Friday. They’re 3 weeks apart so they will be on 4th and 25th September. Having just done 13 weeks straight of weekly chemo, I’m really hoping for a break from it for the couple of weeks between cycles.

So pleased for you that next week will be your last cycle! Are you on to further treatment after that? x

[poppy261]

Have as many offloads as you like @mssteel . EC was just yeuk. Like you, I slept for the World. But it also really makes you feel toxic. Not always sick, but just yeuk.

So make sure you rest as much as you can, and drink loads to swish it out. Cumulatively You’ve already had Pac, so you will be run down generally. Its not as if you’ve just started chemo. Or that you’ve had a huge break inbetween to recover. Your body needs to rest, cope, repair and recover each cycle.

Ive had 11 extra days off….I still get breathless and shattered. So we must be kind to ourselves.

But I can honestly say, like @baldiesrus @bea4 and all you other ladies, Pac equally comes with its own set of problems. For me savage fatigue (again, like EC, my weakness) being one. So they’ve reduced my dose today after 11 days extra off. I said to my Oncologist today (another new one) “I thought Pac was suppose to be kinder to us” He replied, “No, not really, its a strong drug, which just has different side effects”. At least he was honest.

So I think they try to instill positive mindsets before we start different drugs. In the hope it all goes OK. Which is fine BUT….

its a blow when you are one of those that gets hit hard. Or you may worry about telling them its awful, after they’ve said it will be fine.

The truth is, chemo is tough going. If you have minor symptoms, that is truly fantastic, but for those who are hit with side effects, it’s not easy. We just have to ride the waves of yeuk, …..until the waters calm a few days down the line . We have to buckle up, cling on tight, think of everything nice that we can, watch nice films, eat nice food (if we can taste it), just to get through the day.

Oh and get on this Forum and have a good grumble.

The good bit is…we are still here, still alive, still charging through….the best bit is…..time is on our side, it keeps ticking so we know we will get to the end eventually. Time says we will.

Oh my goodness @baldiesrus you are literally days off finishing the chemo marathon. I wont shout too loud incase chemo plays its tricks, but you are sooo close.

@bea4 I hope your next session goes well​. Same to @want2beme and all you lovely ladies.

I am seriously dreading tomorrow, but I will lay there sleeping and pretending I am sat on a beautiful beach in Hawaii, with people dancing and relaxing music playing.

[mssteel]

Thanks @poppy261, I think “yeuk” is a very fitting word for it. It reminds me of my very worst hangovers from when I used to drink loads of wine! I’ve not long since woken up from another 3 hours’ sleep on the sofa, which has surprised me considering how long I was in bed for yesterday. Hopefully I’ll get it all out of my system in time to have a couple of weeks of something resembling normal. Fingers crossed.

Is tomorrow your last one? You wouldn’t have to pretend a lot of that in my chemo unit. There’s some music, dancing and singing most weeks!

[poppy261]

Your unit sounds wonderful @mssteel . Mine is very calm and quiet . Kind and caring, just no music. Unless you take your own.

All I did on EC was sleep . I named myself…..sloth .

Mind you, Im very similar, if not worse, on Pac with cumulative effects. . But on a positive, sleeping makes the days/weeks go faster .

Ive had just over 3 weeks since my last infusion. This last week has been much kinder to me. Ive still been tired, still had cumulative side effects, but Ive been out a lot more. I just make sure I sleep when I come back home. I need that.

So hopefully after days 7-10 ( or sooner) you should feel more normal.

EC hammers your body, so just give in to the fatigue and know its your body saying….”Hey mate, Im taking a battering here. I need lots of R&R”.

If we had flu we would sleep all day. Chemos worse than flu. Xxx​

[poppy261]

Tomorrow is my 7/8 chemo cycles… (3/4pac). @mssteel . Dose dense. EC 4x 2weekly (completed) Now Pac 4x2wkly.

[mssteel]

Yeah, I think I’m putting a lot of pressure on myself to feel better when I know giving into it is the fastest and most effective way through it. I’ve advised others of this many times but it’s easy to forget when it applies to you. And yes, you’re right about how we would just rest if it was any other illness!

Glad to hear you’ve been feeling better this last week and that you’re so close to finishing now. x

[poppy261]

Funny isnt it @mssteel ….we are great at advising everyone else .

I find the chemo debate difficult sometimes, as Teams tell us that they try and make chemo more manageable so we can carry on with our lives. (??? Tricky one).

Truth is, chemo is brutal on our bodies. We need rest.

Some people tolerate it well and do lots of sports/full time work etc.

But others dont tolerate it at all, and sports would finish us off.
So we have to listen to what our body wants. If it says “sleep please” then we need to sleep. If it says “ short walk is fine today” then great. But my Nurses said

“ be careful not to go too far” ….. they have had ladies go out, only to have a system crash, and needed to ring friends to rescue them. My neighbours friend was one of them. She managed 100 mtrs, then her legs wouldnt move!!!

Hopefully you will find that third week kind to you. But just pace yourself. I have an old automatic car with air con. I love driving, so going for a drive was great. I didnt need to walk far when I got out, I sat mostly, pottered, and enjoyed the fresh air and views. But I could travel for miles. Which made me feel as if Id done loads . Like you said, Cinema is another great option for that week. Especially if your cinema has recliner chair options. And if you fell asleep abit, it wouldnt matter that much.

My PICC behaved itself this week. First time in 4weeks. Ive had no phone call to cancel tomorrows chemo, so in theory it is happening.

I will sleep most days afterwards. I watch IPlayer in between sleeping, listen to Science programmes on BBC Sounds. So Im nurturing my brain, even when I’m resting

I never drive for 7-10days as I’m too tired. Too unwell. But thats OK. Saves on petrol.

We can do this

[bea4]

Good morning, girls. So many posts to reply to! I get horribly mixed up about who wrote what and when, so forgive me!

Ah, good old Pac! Sounds like so many of us who began with EC or another chemo cocktail, were lulled into a false sense of security by being told that Pac was ‘ kinder’ ! They fibbed! I can see why, to be honest! Who in their right minds would sign up for so many debilitating side-effects unless they believed it would get easier?

My Pac is lower dose, once weekly, and I’ ve still got 7 more to go! Due, if all goes to plan, to finish September 30th. Which answers your question, @mssteel , I think? Although it’ s not come with the crippling fatigue I had constantly on EC, it’ s still doled out a heap of nasty little sneaky ‘ sideys’ - to whit, tiredness, acheing bones and knee joints, slight nosebleeds, tingly toes, mild tummy cramps, and still the eternally streaming, dripping nose. And no energy to speak of, which goes without saying.

The weekly trips to and from Blood Hub every Mondays and hospital every Wednesdays are a pain in the arse, plus hanging around like cheese at fourpence, as my old Granny used to say, every Tuesday, mobile clutched to hand, waiting for The Phonecall to say ‘ No chemo This Week’….. which is where I’ m at now. So thats 3 days of every week, spoken for. For two days, Wednesday - Friday, I’ m on my steroid ‘ high’ so I overdo everything because that’ s all the time I’ ve got to catch up on stuff. Come Friday night I’m on my beam ends. Which lasts right through the weekend. And then it’ s Monday again!

Nearly there, @poppy261 ! I’ m crossing my fingers and wee tingly toes that you get these final Pacs done without further hold-ups, you’ ve been through more than enough delays.

Who mentioned tingly toes earlier? Think it was @baldiesrus …..like hives? I had a similar weird reaction last Wednesday as I left the chemo ward, violent pins and needles all over both feet, scared me silly! I’ ve never had hives, so your comment made me think that, yes, that must have been something similar to my little unexpected reaction. It passed by the time we’ d got back to the car park. I’ ve mentioned it to the APN who telephoned yesterday, just so they’ ve got it on record.

This is turning into a bad novelette so I’ ll sod off and leave you in peace! Lovely lot, keeping us all sane in this mad world we currently inhabit. Here’ s to our cheerleaders!

[baldiesrus]

HI @mssteel, big WHOOP you are nearly there too, as is @poppy261 I’m more looking forward to the Picc being gone than finishing chemo…I know I will have to wait for the 2weeks before they remove it, but so sick of the red marks and pressure soreness. If my vein was in a slightly different place it may have been more comfy . I hope the 3 weekly isn’t a stronger dose than the 2weekly? Hopefully you can plan for the bad days and look forward to the “ I can do it” days. I have lots of drugs to have as my cancer is hormone responsive 8/8 and HER2 positive ( I think) so need the hormone stuff, the inhibiter stuff and bone strengthening stuff ( not very technical this morning ) and also Radiotherapy. I haven’t got my appointment through for my initial radiotherapy scan yet, Ironically do have an appointment for the consultant to check up on me?? Perhaps they are waiting for me to have my last treatment before giving me an appointment….but that just means a longer wait. There is a lot of waiting for cancer treatment isn’t there? Are you going down the same route?

Hoping all goes well @poppy261 for your reduced dose tomorrow….welcome to my club lol . Hopefully this will mean less pain for you and less exhaustion. My reduced dose gave me less pain, could be a coincidence though hmmm. I did find my exhaustion was less overall too. So glad your Picc behaved. I knew you’d had problems etc, but on my last dose the IV machine kept beeping, the nurse kept Plungering the line with a syringe ( like yours had…that’s what made me recognise what he was doing). There seemed a lot of air bubbles going into my drip….that did worry me….didn’t seem to worry him though. He kept looking at my picc as if it was the problem not the machine. Just as well I am not the type to panic, as he would have freaked me out….and being a man, he wouldn’t ask anyone else for a second opinion. When it freaked out during his break….eventually another nurse came to look at it, she twisted something around near the chemo bag and it seemed to fix it. Hoping it was just the machine and not my picc and it will behave for my bloods on Thursday and for my chemo on Monday ( if the blood gods allow). Not counting my chickens, cos you never know.

There are several ladies on here that are further away from the finish due to set backs, keep strong, you will get there, it’s a marathon and not a sprint. We are all complicated and we all react differently and family members can be very sharing with their bugs, which can set us back too. Keep your eyes on the finish line, each small step is a step closer!!

Big hugs for everyone, and hopefully some rain ( except Scotland who I wish lots of sunshine) Keep strong, try and stay positive for the most part, grumble when you need to.

[baldiesrus]

Hi, Just checking in to see how you are doing. I know some lovely ladies have shared their experience with you, so hopefully made you less stressed. I also hope you managed to get some reassuring advice from a medical team .

Big hugs for you

[bea4]

Same as you, @baldiesrus …..hormone responsive 8/8 etc. so the same rigmarole, rad, CDK 4 &6 inhibitors, bisphosphonates for bone strength and to prevent spread, Letrozole to inhibit oestrogen, not that I’ ve got much! We’ ll be rattling.

Did your son get his schoolshoes?? Bet that was a funpacked expedition! Up here in Scotland the kids are back to school tomorrow.

And thanks for the sun, but honestly, you can keep it down there! I’ ll send you some rain, because you certainly need it!

[baldiesrus]

I think a lot of us will be on the same kind of journey after chemo. Looking forward to no more periods….I told the male oncologist that, not sure he got it. Now we will be telling our bodies what to do instead of the other way around.

No luck with the school shoes. He has massive feet for a 13 year old. Size 10 adult shoes. I at least know what he doesn’t want in a shoe. Trying to find a shoe that fits properly is a nightmare….being 13 his feet are not the same as an adult, narrow in places and they don’t fit him correctly. My son can trash a pair of shoes in a few weeks, he walks funny, and they are not made very well these days, inferior rubber or glue. I ran out of energy after doing 3 shops. He did try on everything that I asked him to, even the ones he didn’t like. Hubby has gone away again now, so we will have to try the 2 shops in town….We may have to buy cheap just to tide him over for a few weeks, but I know it means buying twice, and going through all that stress again. Schools go back in Sept here….I really must look at what the date is lol
Going to have to look for a new bag too…they seem to be getting smaller! These lads like to stuff their coats in the bag!

I hope the other ladies with children are having more success than I am. We really don’t need to uniform/school shop on top of all our side effects, but it has to be done.

Please send us some rain…it is cloudy here in the south…..I keep laughing when the weather people say it’s going to rain….I’ll believe it when it happens. I would prefer the rain overnight, not when I am out and about….I know I am so picky

The best thing about the kids being back at school is that we can plan our days out for the quieter times. Enjoy your earlier start in Scotland

[poppy261]

Wow thats an absolute packed week for you @bea4 on top of all your jobs, chemo, side effects etc. Pac sure is a challenge.

No wonder you are exhausted….write a book on here if you like. How can you write all that in a sentence!!!??? We are here. We are walking besides you . You should write a “ bea4s chemo diary” like Bridget Jones but funnier. Just say it as it is.

Hope your day with your friend was a nice relief, but I bet you were tired afterwards.

Ive had my 7th today. Reduced by 20%. So watch this space. Like waiting for a time bomb. wish I had a crystal ball. . So far, im just tired, but pumped with drugs so who knows. .

What a pain @baldiesrus re PiCC fiasco. I think they are needing taking out now, dont they?! How do they cope with all that poison running through them for so long??. Incredible invention, thats made chemo so much easier…..but as always there is a down side. Fingers crossed they hold out for one more infusion.

Shoe shopping for thin footed teenagers is no fun. My daughter was the same, years ago. Long feet, thin, and a girl. She needed size9. In those days girls shoes only went to 8!!! Boys shoes, went wide at 8, so all we could do was stuff her feet with insoles. Not cool for a teenage girl. But without doing that, she couldnt wear any shoes . I did get some walking boots privately made for her. They were great until she covered them in concrete in Africa. !!! Thats teenagers for you.

You all take care of your lovely selves. Thinking of you, no matter where you are in your chemo journey.

But as you all say, chemo is one part of a bigger picture. But its at least its a box ticked.

Like you @baldiesrus , I have no idea of all the names of the next phase. But Im not sure Ive been given a bigger list. Im aware of Letrozole. Thats all. Perhaps they are waiting to ease me into it bit by bit.

One step at a time is fine by me .
What do they say ….when climbing that mountain , DONT LOOK up. Just look down at the path, or at the view in front of you . Before you know it, you will be at the summit.

Or something like that

[bea4]

Today, at Pac 3 I thought of your wise words @poppy261 ! ‘ Look at the view in front of you’ - so I stared at the ground as I trudged from the carpark to the hospital, along the l-o-n-g corridors to the lifts - and onto the Onco department! Worked a treat!

Strange session. The nurses were strangers, both to me and to each other! One was on loan from ‘Haematology’, and she failed to get me successfully cannulated, so removed it when it wouldn’t ‘ play’ and asked another nurse to do it! Which she did, efficiently. The only third member of staff was a student on placement. Not ideal. Clearly they’ d never worked as a team before, so it was a bit ramshackle and disjointed. Certainly no opportunity to ask any questions at all. Still, it was done, after a few hiccoughs. And I stared at the view at my feet as I trudged back to the car park!

Steroids kicking in nicely, so now I’ m suitably hyped-up for tomorrow’s tasks! Does anyone else get ‘ clumsy’ and ‘ cackhanded’ on steroids? So far this evening, I’ ve dropped teaspoons, forks, skewers and - oh dear - a devilled curried egg - on the kitchen floor. S’okay, it was husband’s egg I’ ve noticed this after each steroid infusion, I just DROP stuff! It wears off along with the steroids!

Love the stories of your son and his big feet, @baldiesrus and your daughter too @poppy261 ! I had a friend with very large feet for a woman . She used to say to shoeshop assistants ‘ Oh just sell me the box they come in, I’ ll wear that instead!’

Wishing you a good night’ s rest if you can manage one. I was so sorry to hear about the ‘Sweaty Betty Brigade’! Must be awful, drowning in hot flushes and night sweats if you’re pre or peri menopausal, and no better if you’re in the menopause either. Been there, done that, got the ( lightweight) t- shirt. I’ ve escaped that side-effect, thank goodness.

Lots of love to you all.

The Bea4 Chemo Diary…….hmmmmm….don’ t worry, I’d not inflict that on any of you….although I agree wholeheartedly that we ALL need to have a laugh sometimes….I’ ll do my best!

[poppy261]

Hi @bea4 goodness they dont half give you a tough time at your Trust dont they.

Its a good job you dont have the Sweaty Betty side effect, I think you have enough to cope with.

Glad the ‘looking ahead….looking down ’ worked. Its the only way I get through this most days. That and accepting being a sloth

Re being clumsy on Steroids…. @alannah172 was struggling with the same symptoms weren’t you alannah172. So its not an uncommon side effect of pre meds.

Maybe they are hitting you harder bea4 as you are trying to get ontop of jobs in that time. I just always sleep and rest after infusions, (and for the following week), so I dont feel the effects of the steroids because of that. I just notice the red hot cheeks the day after. Plus I dont get anymore steroids at home since finishing EC. But I do get crippling side effects of chemo 2/3 days later.

So make sure you pace yourself carefully. Leave non urgent jobs. My housework has come to a standstill for the time being. Ive accepted it was getting too much for me. I live on my own so I do BiteSize jobs as and when, and happily turn a blind eye on everything “in the queue”.

Its so hard trying to find the right time to get essential jobs done though. I tend to cram shopping etc into the 2/3 days prior to treatment, due to having the two weekly cycle. But I noticed this week doing my shopping the day before treatment nearly floored me. I had to race round Sainsbury’s as fatigue started to set in, get home, unpack freezer/fridge items only (ignored the rest), then I basically slept for 7hrs solid from 7pm to 2am.

We are on the homeward stretch, but from reading other Posts from other Months, this is also the hardest time due to cumulative impact of chemo. We are shattered. So be kind to yourself.

My other (adapted) go to quote is: “my house is just muddled enough to stay happy, and clean enough to be chemo safe”

Sending you all love, hugs, strength.

[elastigirl]

Hey all x hope everyone hanging in there - a little nicer with the fresh air instead of the heat

Thx for mentioning the dropping things @alannah172 me too ! Clumsy as anything- didn’t know if it was hormonal , peripheral neuropathy or just tiredness - didn’t realise steroids might cause it !!! So thx x x

So I Had pac #3 today and my Portocath ( Pedro ) was a nightmare, they could flush it - but it’s clogged or kinked as far as they couldn’t get any blood draw out of it all - i had3 nurses on me laying me flat manipulating my neck and chest to try and straighten it & infusing me with a fluid challenge over an hour to try and get it to work - no luck …. so I’ve got to have a lineagram ( I think it’s called ) done Friday to manipulate it to clear it or possibly have it re-sited aaaaaarrrgggh. Anyone else got a port& been through this ???!!! Any advice super welcome ?

Ps any other warrior queens with me at 5am ?? Been awake since 2am these damn steroids …..

[mssteel]

Hey @elastigirl

Yep, I’m with you but not because of the steroids. It seems to be the hot flushes doing it for me!

Had my first Pembro/EC infusion on Friday after finishing 12 weeks of the Pembro/Pac/Carbo regime, steroids gave me a reasonably good Saturday, felt like holy hell Sunday to Tuesday and started picking up again yesterday. In fact I managed to stay awake the whole day yesterday!

Nodded off around 9pm last night and woke at 2am, which I now consider a relatively decent run of undisturbed sleep to be fair, but tossed and turned from then until finally deciding to give it up at 5am. I now seem to spend a few hours per night in the cycle of throwing the covers off because I’m suddenly melting then dragging them back over me because I’m suddenly chilly. It’s like my body just has no clue what to do.

Sorry to hear about your issues with Pedro. I have no advice as I’m not a proud owner but tons of sympathy for anyone experiencing anything making chemo more of a PITA. x

[poppy261]

Hi @elastigirl , yep, ive been awake since 4am. Watching TV. Drinking smoothies. Then I crash later on.

Re your Port….my PICC did this same thing over three weeks. They could flush it, but couldnt draw blood. Like you, I had to lean in different positions, move my arm into different places etc. No luck. Then one Nurse shared her technique of….flushing quickly twice then drawing blood soon after. It worked.

The third week, the Nurse also gave it a supa flush. So the fourth week it worked straight away.

They said debris can get stuck in the tubes. The flushes push everything out, but the drawing/sucking can pull cells back in, thus clogging the tube again.

They said they could flush with a chemical to clean it through, but that was a last resort. If they had needed that, but that didnt work, then the PICC would have needed replacing. Like your Port.

I had an XRay to check the tube was not kinked. It was laying OK in my veins.

So really hope they get your Port sorted for you. Did you still have your treatment, or was that put on hold?

@bea4 will be interested that you also get clumsy on steroids. As if we dont have enough side effects to deal with.

Glad to hear you are surviving @mssteel . Perhaps we are all turning into bats with chemo. .

My body clock is all over the place.

Pain about the melting. You sound like me on that front. And im post menopause, and still getting them on chemo.

Stay strong lovely ladies.

[dcfc84]

Morning all, I was woken by heavy rain!! I’ve had a 4 week gap from previous chemo due to being away last weekend. Final DOC due this Friday!! Tempered with low neutrophils so it might not happen

I met radiotherapy yesterday and have a CT scan this morning to get the layout/position for the 15 sessions I have to have. My hospital doesn’t do tattoos anymore so I suppose that’s a benefit. I just have to hold my breath for 20 seconds, which is longer than you think, especially as I’m out of condition due to taking things very easy during chemo.

I’ve also purchased a swim prosthesis from the hospital and a new costume from Lands End clothing, fortunately managed to get the latter in the sale. Not much choice out there for mono boobs!!

Wishing everyone well for the next few days and weeks xxx

[mssteel]

At least watching TV at 4am is significantly better than it used to be @poppy261. If you were having to go through this in the 80s, can you imagine!