May 2024 chemo starters

So after getting myself all prepared for my first docetaxel I walk into the chemo centre to be told its been cancelled :sob: they can’t tell me why or when it will be rearranged to yet. I am absolutely fuming.

That’s shocking - no reason given at all? I’m so sorry to hear this. Perhaps a call to your oncologist or breast care nurse to find out why or get a bit of support.

The receptionist suggested I rang my oncologist secretary which I did and she said “Why have you rung me?” You can imagine that helped my mood!
Eventually found out its standard practice after a hospital stay and is only delayed until Tuesday :crossed_fingers:. This from the Dr that discharged me and told me it would be fine no delays :exploding_head:

Dear all

I will start the new cycle treatment which is Docetaxal tomorrow and cannot fall asleep now:(

Does anyone started same treatment with me and can tell any side effects of it??

So nervous……

Is it because of the blood test not pass?

Hug you :people_hugging:

Hi everyone, I’ve got my final EC today which is good but I’m dreading the next 10 days, hopefully will get something for indigestion in my bag of drugs to take home with me after I discussed it at my check in with the nurse earlier this week. Like lots of you on EC I’ve struggled with constipation and added a handful of prunes to my breakfast now to try and help things keep moving but have got some laxatives in case it gets really bad.

I’ve had a really weepy eye and runny nose over the last day or so which doesn’t feel like a cold, might be a touch of hay fever? But I’m wondering if it’s to do with losing eyelashes and nose hairs, anyone else found this? My eyelashes don’t look like they’re falling out loads but I am aware some are going.

Sounds like everyone is going through a lot, @tori123 sorry you had to be admitted to hospital and that it’s put your chemo back, it’s awful that they didn’t let you know about it.

Hi lovely people, for those on EC-T, what’s the gap between the EC and the T? I’ve got my 4th and final EC next week (literally crawling towards to and will be so glad when it’s done as have found it so hard), and was told I have a 2 week gap but just wondered if that meant just the normal 2 weeks then straight onto T (I’m on a 2 weekly cycle) or it’s the normal 2 weeks and then an actual gap afterwards?

I had no gap, just the usual two weeks from last chemo. Best of luck on taxol I found it way easier.

Thanks so much, that’s what I thought. That’s so reassuring to know

Hey everyone, just surfacing again after round 3 and holding onto the fact only 1 more EC to go. However, I only just discovered, that I’ve been on a dose reduction after the first round, and nobody told me! I feel a bit mixed about that as I still find it a struggle but tolerable and have avoided returning to hospital… so not sure I’ll be arguing with them to return me to a full dose for my final round, but obviously thoughts of efficacy are a concern!
I also had the picc line put in, and thanks to everyone who shared their experiences, it was very reassuring and gave me confidence. Happy to report that all went well and as mentioned by others made chemo so much quicker and less stressful.

@tsoph i hope you’re feeling better after your infusion? It sounds like you’ve had a tough time of it, and it’s not just the physical symptoms that we have to endure, it’s the constant mental toll of second guessing everything, wondering is this normal? Should I be concerned? It’s just so draining, so sending you lots of hugs and strength :heart:

@dragonk well done on reaching that final ec mark!! Hopefully the indigestion has been manageable for you this time too. Just wanted to add that I too have been suffering with the weepy eye thing, still have lashes but they are reduced. Have read that wearing glasses can help protect the eyes, but not needing glasses generally I was hoping the weather would give me an excuse :sunglasses: but no such luck :roll_eyes:

@glitteryrainbow am reading with interest how you’re finding the weekly paclitaxel, and appreciate the heads up about driving as had thought I might be able to if side effects were less, but apparently not :confused: I have also taken inspiration from your comment on being more productive and want to give myself something to focus on, so have decided to re-vamp an old wooden trolley in my kitchen, going to paint it and sew some storage baskets for it! I have all these wonderful insta worthy expectations for it, but have a sneaking suspicion the reality may not live up to it :joy: still it will pass the time at least!

Thinking of everyone enduring right now and sending positive vibes while I have them :two_hearts:

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Thanks @kiltie its been a real turd of a cycle!!!
Had a mag infusion on thursday last week but had to be isolated as they discovered i was neutropenic and had a chest infection

3 days later ive smashed the infection with antibiotics and more filgrastim but my magnesium was lower than my original number so ive been sat having another infusion for 3 hours!

Very grateful for our nhs but honestly at this point the idea of 3 more cycles makes me want to plant my head firmly in the sand!!!

1 more to go, you can do it! Please do not stress about the paclitaxel. I had my 2nd dose on Friday and honestly feel so much better with minimal side effects. Ive managed to continue being pretty active and even managed to stay awake the whole day yesterday :joy:. I kept saying to my partner “youd never know I had chemotherapy yesterday!”
I think last week my body was just getting used to the new drugs and it reacted badly (I had a similar reaction on EC). Got my MRI next Sunday and this will be the first one I have since being diagnosed so hoping to hear some positive news :crossed_fingers:t2:.
Im glad youve taken some inspiration from my post and I hope you enjoy upcycling your trolley! I am sure it will be beautiful! :sparkling_heart:

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@kiltie i also have one more EC to go? Mine is on 18th June. I hope it goes as well as expected. I’ve been having heartburn on and off and exhausted to the point extent where I feel overwhelmed and emotional. My stomach seems to overall be back to normal after my last cycle. Can’t wait for chemo to finish but I have a long way to go. My hair is continuing to shed which is tough.

@tsoph I’m glad to hear that you finally smashed that infection, and hoping that second infusion finally brought your mag levels back up. But completely understand how hard the thought of another 3 rounds is for you; it always feels like there are no easy choices anymore, only trying to decide between the lesser of 2 evils :confused: and planting your head in the sand is an absolutely valid way of getting through sometimes :heart:

@glitteryrainbow It certainly sounds like you’re faring better this time and I hope that continues for you. I guess I was worried about weekly as I wasn’t sure if there would be enough recovery time between doses, but perhaps if side effects aren’t as bad then you don’t need as long (at least that’s what I’m hoping!). I’m keeping my finger crossed for you too for your MRI on Sunday :crossed_fingers:t2: and will keep you posted on how the up cycling goes!!

@rosa1 Yes my final EC is on the 18th too and knowing it will be the last will help me through it. There will also be some comfort in knowing I will be halfway through this nightmare of chemo, as after the first one I didn’t think I’d ever get through any more :cold_sweat: I appreciate though that things aren’t as straightforward for yourself as you’re pausing to give birth. I can only imagine the many emotions you must be experiencing right now, and feeling overwhelmed and emotional is certainly natural under these awful circumstances you find yourself in. How did you find the cold cap after your 3rd round as I’m aware you were concerned about it with your hair loss? Sending lots of hugs and strength to you :heart:

Take care everyone xx

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@kiltie im still losing hair daily and some days more than others. It’s awful the amount
I’m losing. I’m hoping I’ll get some regrowth before I move onto paclitaxel. Are you having further chemo after your next cycle. I’m looking forward to the break but then also it’s getting closer to the birth. I’m hoping she won’t be too small although they’re planning to induce me around 37 weeks. That part I’m not looking forward to as last time I was in hospital for quite a few days before my daughter finally came out.

Hello, hope everyone is doing as well as possible, I just wanted to post a little update from this morning in case it helps anyone.

So I was due to start 9 weeks of Paclitaxel, along with my first of 18 x 3-weekly herceptin injections (because I’m HER2+) today. Both new to me, so I was wondering what joys were waiting in the wings :roll_eyes: had low blood pressure again even before I started, so they gave me a saline drip before anything else.

The nurse then looked at my record and said ‘oh that’s strange, normally we give the first herceptin and the first Paclitaxel on consecutive days, so if you were to have a reaction to either, we’d know which one it was’. Apparently that’s just for the first time, after that they can be given together. She called my oncologist and she was right, but that hadn’t been reflected in my schedule.

So today having mentally prepared myself for whatever was to come, I have just had the herceptin injection :roll_eyes: got to go back tomorrow for the Pax. Not sure what that means for next week, but I’m not worrying about that - and at least my BP is normal again for now!

A day’s reprieve at least! This stuff is all so complicated :exploding_head:. Just thought it might help people moving on to the same thing as me xx

Part 2 - I’m just back from the Pax infusion, and as I know a few of you are going to have that as well I wanted to share my experience.

I was given one anti emetic and a couple of tablets ‘to help with digestion’ - presume that’s a common side effect. There’s a 30-minute pre med saline drip and IV steroids that make your lady bits tingle like they are on fire!! (apparently men don’t get that feeling - not fair!) before the good stuff, which then takes an hour to drip through. Then they flushed my line for 10 mins before I was allowed to go - with a couple more days dexamethasone steroids and anti-sickness tablets.

All in all, it went fine - no sickness (yet) but I have just now started with very tingly lower legs and feet - peripheral neuropathy is something they watch carefully as it can cause permanent neurological damage so if you find have an ongoing issue with that, do mention it as they can reduce the dose/look at other options. I’m watching and waiting but hopefully it’s just temporary.

Just got home now so going to rest and watch a couple of episodes of the Traitors which I never got around to watching when it was on. Good sofa watch!

Hope everyone has nice a weekend as our weary bodies allow - I think it’s warming up again :sunglasses: xx

Just reading everyone’s updates and catching up. Had chemo - cycle 3 out 4 TC cycles on weds. It wasnt pleasant. Mixture of a bad night’s sleep due to steroids, combined with the nastier drug -cyclophosphamide - being given first (because the first more kinder drug was stuck in traffic), on top of my lunch and cold cap on a bald head although I had a surgical cap on had a horrible headache and felt very sick. They gave me an extra antisickness but it was the first time I felt like the cold cap wasnt worth it and I wanted to rip it off half way. I had a good cry when I left the unit.

Two days in I’m feeling very fatigued after this round but not too nauseous thankfully but then Saturday is normally my bad day so we’ll see how that is. Also developed a tickly dry throat and cough which I’m blaming on hanging around the hospital on Monday morning between review and oncologist appointment which was delayed. Keeping a close eye on that and my temperature and will call up if it doesn’t improve or temperature raises and focusing on the next cycle being the last. Oh, apart from the 5 more herceptins and the tamoxifen of course but I’m forgetting about that lot for now. Take care all x

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@snoop182 it’s c**p how much the drugs that will ultimately make us more resistant to cancer recurrence can also make us feel so rubbish and take so much from us. The fatigue is something I really try to fight against but it gets me the minute I sit down to relax! Oh and the herceptin is a doddle, I am having 18 injections (a years worth) but I had no after effects yesterday at all :+1:t3:

I’m so thankful to have put the EC behind me now - hang in there and it will be you next time :heart: the paclitaxel seems to be tolerable, my head is clear and sickness/nausea not an issue :clap:t3: I’ve just eaten a fish finger sandwich :joy: these cravings are ridiculous, and I’ve put more than half a stone on with all the extra carbs - but I’ll sort that in September when my line comes out at the end of chemo.

When I was in the chair yesterday a lady who came in for her second EC had been very keen to use the cold cap on cycle 1, she obviously had had lovely thick hair but it was falling out in big chunks and she said ‘when they said I might lose 50% I thought it would be all over, not in patches - I can’t do this any more, it’s too stressful :pensive:’ and she told the nurses she didn’t want the cold cap any more. It really upset me actually, I thought about the many of you on here that go through so much to keep your hair :heartpulse:. But she had come to terms with having it shaved off, and was starting to see that more as taking control.

I’ll stop rambling now! xx

I’ve had 3 herceptin now and mostly just finding my periods are loopy and I’m having hot flushes particularly at night but that could be the chemo. At 45 I’m not looking forward to the menopausal symptoms on tamoxifen but it’s necessary so I’ll bare it. Hair wise I have not much on top or back now, fluff mostly and kept a long stupid fringe at the front to try to cover thr baldy bits during cold capping and bit of a thicker monk strip around my lower hairline. If I was having more than 4 cycles I’d ditch the cold cap but I’m going to persevere one last time, I think. But will see what hair remains by then.

After that I think I’m going to cut it all as short as possible or shave it so it all grows together. Hopefully nice and quickly and thickly after cold capping.

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