May 2026 chemo starters

[poppy261]

Glad you met a kinder Nurse @mssteel . It makes us so relieved when that happens. We can just drop our defences and feel nurtured/listened to. Safe.

Generally Nurses are much better than the old heavy handed Matrons of the past. Ive known a few of those in my time. But some still fall short with inappropriate, side comments that knock us flat.

Good, compassionate care, really does help with recovery and our well-being. It’s well documented. And it is part of Nurse Training now.

Hope you’ve had the injection now, and it quickly helps to increase your levels.

And yes, hope the food is nice. I happily eat anything and everything if its been made for me. They give us free sandwiches during chemo, if we are in over lunch. I always say “yes please”.

Re pin pricks @baldiesrus . They were all over my body, before Id taken the pegfilgrastim. Then got worse yesterday. Ive been hit more with the nerve/neuropathy/neuralgia side effects this time from Pac. . The Nurse said they could reduce the dose again if its triggering nerve damage too much. So they are monitoring me.

Im lucky that my Team always check if i’ve rung 24/7 prio to PICC care/treatment/Oncology meetings. So I know they have already considered side effects/concerns before talking to me. My thought re 24/7 is, if something is serious, at least they then have time to flag it with Teams. If treatment then needs delaying they have time to do this, and if doses need reducing, they have time to do this. They wont reduce doses on the day, as the Pharmacist needs notifying in advance.

Re: reduced dose…..Im probably less cripplingly tired this cycle (early days though) but still needing to sleep a lot. But the nerve pain has managed to keep me awake every night …..(that and toilet visits) which doesnt help.

The nerve pain is a new side effect….. Get rid of one, only to get something else .

Oh I will be so pleased to come off chemo. One more cycle for you @baldiesrus . You must be so excited.

[mssteel]

So the nurse just gave me my filgrastim jab, which has mentally made me feel so much better. And sure enough, she sprung the anti-clotting injection on me. Oh my life, you weren’t kidding!!! I’ve had friendlier insect stings.

[baldiesrus]

Oh Poppy so sorry to hear the the nerve/pin pricks has taken over the pain side effects, Paclitaxel the gift that keeps on giving. Good that you are not quite to tired, despite the toilet trips and nerve pain. You are so near the finish line for chemo too, keep focusing on that.

It does sound like your medical team are more communicative with each other than mine. I doubt if my oncologist would even be working over the weekend, and if there were issues and my treatment needed to be amended or put back, I wouldn’t know until Monday. People arrive at my chemo unit ready for their next dose, having had issues that have been reported, they are kept waiting, sometimes hours, while the specialist nurses try and find out if they can have treatment or not. There were 2 ladies that had that issue on my last treatment. One lady could have hers in the end, the other could not.

I’m trying not to get excited, cos you never know. My appointment is 8.30am and I was expecting them to ring me and change the time, as the pharmacy can’t usually get my drugs ready for the time I’m booked in for. They haven’t bumped me. Still doesn’t mean my drugs will be ready in time….I’ve had to wait for them in the past. I will probably get the free sandwich though…the egg mayo is the only one worth having though We also get tea/coffee and biscuits too. I’ll take an emergency sandwich in case I can’t have the egg one lol.

I am hoping you have a better night

[baldiesrus]

Doh, anti-clotting injection important but ouch!!! I did laugh about the insect sting comment. At least you were pre warned lol. I hope you have a good night.

[mssteel]

Yes, I appreciate the heads up. Gave me chance to have a good deep breath first. It was still so much worse than I thought. Hope you have a good night also. x

[poppy261]

Thanks @baldiesrus . Pac is certainly not letting me get comfortable . Its far more unpredictable compared to EC. Or maybe my body is just too pummeled now.

Really hope your last cycle happens. . 8.30am is supa early. Mine is 9am so I start getting ready just after 6am. I feel zombied after a bad nights sleep . But then I just sleep through the infusion . Perks of a recliner chair.

I too take a spare sandwich, just incase I get too hungry. But their cheese savory sandwiches are yum. We get a yogurt, cupa soup, drinks, biscuits if we want them. So we dont do too badly. They treat us well.

,………

So glad you have had your injection @mssteel . . Never knew you needed anti blood clotting injections as well. The sting didnt sound remotely nice. Well done for coping with it.

Seriously hoping it all works as it should.

[daffodil_dream]

Hi everyone, had a lot of news to catch up on with the forum! How are we all doing? My heart goes out to anyone struggling at the moment

I hit a huge milestone on Monday, and had my very last chemo - I was on EC before moving onto Docetaxel, but was very much in the minority as I know many of you moved onto Pac instead. It’s a very surreal feeling to be finished - hasn’t quite hit yet which is strange!! But I think it’s because I’m due radiotherapy - so don’t quite feel like the journey is over yet. Mind you, very much not complaining to see the back of the chemo!!

[poppy261]

Fabulous news @daffodil_dream . So glad to hear you have had your last chemo. Such a relief.

You’ve had some challenging times over the last few months, but got through them all.

Hope your appetite returns quickly, once the last side effects go. It will be great enjoying food again wont it.

Fingers crossed your Radiotherapy journey goes smoothly. I recall you saying you are part of a trial. Wouldnt it be nice if you only had a week of Radiotherapy.

Hoping the last chemo side effects treat you kindly. Well done for getting through chemo.

[baldiesrus]

Whoop Whoop, last chemo done, what a good feeling that is….provided the side effects haven’t been too bad. I do know what you mean, our journey isn’t over yet. I hope your taste buds return quickly and you can feel a bit more normal very soon. I hope the Radiotherapy is kind to you too.

[baldiesrus]

Someone asked me if I was going to ring the bell after my last dose of chemo, and I paused and said, well no. I haven’t finished getting treatment yet, I still have radiotherapy to go and all the other drugs to go yet. It feels premature to me to ring the bell. I don’t know if anyone actually does ring it in my chemo unit. It is right in the entrance by reception, away from the waiting room and much further away from the treatment area. I also doubt the staff would be available to line up and clap and cheer (as shown on tv) as they are far to busy treating other patients.
Has anyone else seen or heard people ring the bell?

[baldiesrus]

Morning @mssteel, hope you are feeling well this morning. Hopefully you slept as well as you could.

Morning @poppy261 I hope you managed a slightly better night too. I also will be up at 6am, on chemo day, I have a tablet to take

Morning to all, I hope you have had a good night too.

[mssteel]

Hey @baldiesrus

They ring the bell at my unit and it is exactly as you see on TV with the staff lined up and clapping and cheering.

The people I’ve known do it have done it because they felt they needed it or their families needed it to draw that line. Some don’t bother because they don’t like the fuss or are indeed not quite done with treatment. I’ve also heard some patients with secondaries express sadness from hearing others ring the bell because they never will.

Hope this helps a bit with your decision making.

[poppy261]

Morning @baldiesrus . I had less pain last night, so that was a bonus. But it tends to come and go in waves. Still wobbly on my legs. So have to be careful coming down stairs. Made sure Ive eaten and drank loads. Which helps. But the toilet dashes are such a nuisance at night time . Will be lovely not to drink so much and be able to sleep longer uninterrupted . But the fatigue, though still there, is definitely less intense. So the reduced dose has helped on that front.

Ringing Bells . Mmm we dont have one of those at my hospital. Its all quiet. Ive seen them online in different hospitals. Some Trusts really go to town with them, dont they.

For some people, they love the bell ringing session .

But, like you said, theres no way staff would be able to line up and clap at my hospital, even if they had a bell, when they are rushed off their feet.

But as you say, its doesnt feel right when we still have treatment to come. I could ring a bell if I was cancer free and no more treatment. That would seem the right time to do that. But that years in the future.

But we dont have a bell, so I dont need to worry about that one.

It will be a joy having the PICC removed. That will feel so strange after so many months attached to my arm. And no more sessions in that chair will be sheer bliss. Driving my car more will be liberating

And our hair might start to grow again…. . That will feel strange.

My wig is starting to shed hairs, so perhaps, as my wig goes bald my hair will be growing underneath.

It will be a long day for you tomorrow. I will be sending endless positive vibes your way.

[poppy261]

Gosh @mssteel bell ringing is actually really tough for some people with secondary cancer, isnt it. I never thought of that side. I can understand some people feeling very low, on hearing the bell. That may be why my Trust doesnt have one.

Hope you had a better night last night. Hope today brings you good news.

[mssteel]

I’ve personally already decided not to ring the bell for various reasons and that is a part of it.

Well, I’m going to be here again today unfortunately as they want to keep administering the IV antibiotics and ideally see some improvement on those bloods before they boot me out. Just waiting the latest test results now!

Sorry the Pac is being a PITA for you. The effects can be horribly cumulative with new ones appearing and old ones either becoming more severe or more prolonged. My last infusion (Pembro/EC) knocked me so much that even someone cheerily saying “Only two more to go!” doesn’t help. I smile in agreement, of course, but I’m actually thinking “Oh my god, I’ve still got two to go!”

[poppy261]

Good to hear they are taking it seriously and keeping you in @mssteel . Those levels are seriously low. The last thing you want is to get an infection because of them.

Your own room, fancy bed, food provided and some TLC sounds like a good plan.

These darn side effects are a real PITA !!! It will be the best part of finishing chemo….saying goodbye to them wont it. We surely can’t be complacent during this treatment can we!! The time I let my defences down will be 2wks after my last infusion.

Our bodies take such a hammering. We have to be kind to ourselves.

My hospital use to have TVs. Well, they are still all installed by each bed….. but none of them work. !!! Complete system failure. At least mobile phones are a good substitute for keeping us entertained. So long as we remember our chargers.

Hope today is one that brings you good news. Thinking of you.

[alannah172]

Oh my goodness girls, such a lot going on with side effects!!

@poppy261 how many more infusions do you have? Just one?

@daffodil_dream that’s fantastic you’re all done woooo hooo did you have your picc removed yet??

This morning I stubbed my little toe (my clumsiness never stops!!) and my toe nail came off so I think that’s down to the pac as I’ve noticed my finger nails have discoloured too

I think I might have lulled myself into a false sense of security with the pac after EC!! I seem to have just as many side effects, but nothing as painful as the EC!! From what I’m reading here, you guys seem to be experiencing similar things??

I love this little group! I know we’re from all over the place, all with different breast cancers and treatment plans, but it’s the one place I really feel comfortable these days as we all seem to understand where each other are coming from

Before we start to move forward with our onward (albeit unwanted) journeys, I just wanted to say thank you all for being there

[poppy261]

Your welcome @alannah172 . . Same back to you.

I think the Groups stay open if people want to chat after chemo stops. There are no rules or cut off dates.

I know the March group are still supportive of each other, even though they have moved on to operations and Radiotherapy.

Re my last chemo….its Thurs 3rd Sept, unless anything is delayed again. I get really nervous now at the thought of complications popping up last minute.

What a pain (literally) having your toe nail break off. Thats really not nice. . As if we dont have enough to deal with

Since being on Pac my left big toe nail is literally hanging in there, but very “movable”. I keep cutting it back to lessen the chances of it being accidentally ripped off, but its touch and go.

I actually think I dislike Pac side effects more than EC. EC was awful for constantly feeling toxic and exhausted. But Pacs neuropathy, weakened joints/muscles, savage fatigue, dodgy nails, acute pain etc…are really not nice. I wouldn’t say it was the easier of the two treatments by any stretch of the imagination. Although, to date the actual infusions have gone OK and Ive not had that woozy feeling as Ive left the hospital, like I did with EC. Plus…no red wee….!!! But then Pac hits me after that. So it lulls me into a false sense of security each time. And each time I get another odd set of side effects…. Im not finding a “Pac Norm”.

We will get through this. sending you love and strength.

[bea4]

I’ll ‘second’ @alannah172 ‘ s comment! It’ s good to know we have a place we can come to have a moan, a groan, and occasionally a big Hooray! amongst people who truly understand what it is to go through all this stuff! So a BIG ‘ Thank You All’ from me, too!

Now, I’ m not a person who advocates violence in any shape or form, but if ever I come across the oncologist/specialist who first said ‘Pac is far easier and gentler to cope with…’ please form an orderly queue behind me, cos I’ ll be at the front, armed with a blunt instrument…

Today, nose bleeds - not bad, but ‘there’ - most food tasting foul so appetite at an all time low- achey bones - fingernails starting to flake and split - eyebrows gone the way of the rest of my hair - platelets down, neutrophils down - though not as bad as @mssteel ‘ s - isn’ t it fun?

The bell-ringing thing…..hmmm. Whilst I can understand why some people would want to do it at the conclusion of treatment, I do agree with those of you who would be very uncomfortable taking part in something which has the potential to upset so many other patients. It seems horribly insensitive, somehow. Moreso if these bells are within hearing of chemo suites/wards. I’ ve no idea if my hospital has a bell, I’ve neither seen one nor looked for one, but I’d certainly not be ringing it!

Pac 4 on Wednesday for me, if the bloods are managing to behave tomorrow. All the best for what’ s left of the weekend, girls. Upward and onward…..

[alannah172]

It’s interesting the different approaches to bell ringing. I haven’t seen ir heard a bell at Yeovil.

I met a girl a few weeks back who was on her last one, and I asked her if she was ringing the bell. She said she wasn’t as her mum also had cancer and hadn’t finished her treatment

It got me thinking back then about it and I’d decided if there was a bell option, I wasn’t going to ring it either. For other patients, but also that there’s radio to go.

Saying that, I completely understand if anyone rings the bell after this show!!!