March 2024 chemo starters

Hi, I’m on EC too, but every three weeks. For the first one, one of the anti-nausea drugs caused my blood pressure to drop dramatically and meant that I was house bound for almost 2 weeks. I had realised that one of the anti-nausea drugs was making me feel much more nauseous (!) so for the second, my oncologist stopped that drug and the dizziness stopped too. I really hope they sort it out for you. It sound horrific.

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Hi @sarahb20 thank you for replying to me :slight_smile: that’s interesting that you mention the dizziness in relation to the anti nausea drugs. I’ve been dealing with a bit of dizziness this cycle too and it has left me unable to function properly.
If you don’t mind me asking, which anti sickness drug was it that was making you feel dizzy? It didn’t even occur to me that my meds could be causing these side effects too. I am currently taking cyclizine as my “when I need it” drug, which has been great at keeping my nausea under control during the day but I have been particularly dizzy this cycle. I wonder if it’s related. Xx

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It was Domperidone. I’m now only taking Ondansetron, but I think that may change too as I’m getting migraines!

@sarahb20 i was taking domperidone to start with but it really did nothing for me, in fact i do remember i felt worse after i took it. I lasted a few days first cycle, thinking it was normal before my team changed me onto cylclizine.
I have ondansetron too but I only take it for the first few days after treatment (as instructed by chemo nurse) that seems to work well for me too.
I hope you manage to find something that works well for you soon. Don’t suffer on, as I’ve been told by the helpline many times :joy:

Anyone else switching chemos for their next round? I’m due round 4 this week, blood results depending, and I’m switching from EC to D. I’m nervous as I don’t know how my body will react to this different type of chemo or how long the side effects will be severe for before lifting on the not so merry go round that is the 3 week chemo cycle. It’s like starting all over again! Anyone already switched chemos with some words of wisdom?

I switched on Friday and was very nervous and worried about a possible allergic reaction. 3 days of steroids meant no sleep then a big come down as took the last dose Saturday evening.
Haven’t felt as sick but still got the chemotherapy/steroid belly pain plus the awful taste in the mouth.
So far the worse side effect is the joint pain. Feels like contractions in all joints and nothing seems to help. Definitely stock up with paracetamol etc. Only meant to last a few days so fingers crossed. I also started herceptin injections so could be that and not the D. Good luck :+1:

I hope your joint pain passes soon. I’m getting the injections too. But this is really good info to have. Thank you. X

I’m the same, I’ve been so lucky so far, had my last Red Devil yesterday, and I’m fine just a bit hot in the face. I’m worried I won’t be so lucky when I start docotaxel even though the docs say it’s easier. Cant be easier than just a red face​:sob::joy:! The joint pain sounds awful. I guess we have to wait and see. :confounded:

For those of you asking about switching chemo. It may be helpful to scroll through previous chemo starters groups to see what may or may not have occurred to others in the previous months.

I only had one chemo so switching didn’t apply to me but I did find it helpful to read through previous groups before and during my chemo.

You can also talk to your team, the nurses that give the infusions or a BCN nurse

  • Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
  • Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.

Hope this helps :smiling_face_with_three_hearts:

I had my first Docetaxel today and it was sooooooo much easier than EC. No sickness, no weakness. If you’re going to react to it, it’s in the first 15 mins normally and they would cease it and give you Piriton and Hydrocortisone. My Oncology Lead said that they can try slowing it down and occasionally bypass an inflammatory response but an allergy is an allergy and it doesn’t guarantee that you won’t then react next time and need to change drugs.

Drugs I’ve been given are:
Day 0 (Day before) : 16mg of Dexamethasone (8 pills consisting of 4 for brekkie and 4 for lunch)
Day 1 (Day of Chemo) : same again
Day 2 : same again
Day 3: 8mg
Day 4: 4mg
Day 5: 2mg

This isn’t standard but I was having issues with dropping off a Cliff mentally every time I finished steroids so they’ve tapered them and it softens the blow a LOT!

Because of the steroids and then causing acid, I’m taking Omeprazole first thing each day during steroids.

Took Akynzeo as normal on day of chemo.

Injecting slow release G-CSF on Day 2 after 24 hours.

Domperidone if needed but advised that’s unlikely.

OraMorph (I already have) for joint and bone pain as I can’t have codeine or Tramadol.

They said that your guts can be a problem around day 4-6 but usually only for 24 hours. I’m drinking kéfir and they highly recommend it as my ovaries have gone into hibernation and the loss of oestrogen is enough to cause tummy issues anyway and kéfir is a one stop shop to help. Other ladies on here have reported it making a huge difference too. The one cycle where k didn’t drink any was horrific while my other were much better. Fixed constipation overnight!

Good luck to all those changing to Docetaxel. I was terrified as I’d read horror stories but I can already feel this is less poisonous. But I would rather have joint and muscle pain (which I’ve been told to expect, especially after the bloody G-CSF) than nausea so it’s a win for me. Xx

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Docetaxel update: so I’d my first of this one on Wednesday. I was nervous but so far so good. The steroids stopped yesterday (I struggled with sleep on them!) and today I’ve been achy especially in my legs and my teeth and gums are more sensitive. Heartburn yesterday but seems to be settling today hopefully that continues. No tummy issues yet but it’s maybe too early.

Weirdly my period arrived today haven’t had that since a week after my first chemo! So that’s an extra joy! But just trying to rest up and keep doing gentle movement.

Just thought I’d put this out here for those nervous about switching so far it’s been better for me than the awful nausea and heartburn I had with red devil which took me longer each round to recover from.

If you can enjoy the bank holiday weekend ladies

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@jools2

Day 3 of first Doce here and it’s still thoroughly bearable compared to EC. Painful joints by end of Day 2 but I had that on EC anyway! To get up and eat breakfast happily rather than fearing how I would manage to even drink on EC is such a massive gift!!!

I’m pleased I read the horror stories though as this feels like a walk in the park in comparison to EC! Pain is manageable. Nausea is not!!!

It feels like such a relief to not be breathing through nausea, lying in bed all disorientated and sad.

Paracetamol seems to manage most of the pain well enough although I took OraMorph last night after an 11.5 hour drive to Scotland. Slept well though! :joy:

Onwards and upwards! We’re over the halfway mark!! X

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Isn’t it funny how people react so different to different meds? I’ve just caught up with comments and seen people switch to Docetaxel and not be too bad. I’ve recently had round 5/6 and only every had Docetaxel, Carboplatin and Herceptin…I’ve had my doses reduced 4 times due to excessive side effects. Though this last one was definitely and finally an improvement but each time I’ve juggled between constipation and diahorea, nausea where I’ve tried 2 different types of tablets, no taste for 2 weeks, mouth thrush, nosebleeds, bone and leg pain, sore neck,l collarbone and throat for 3 days after my steroids finish and my finger nails have started to go funny. I can’t wait to get my last chemo done at the end of the month, out of every 3 weeks I have to probably spend a week in bed and then I work from home the rest of the time.

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@chellebelle i think it was more that I spoke too soon! Ended up in neutropenic sepsis, with horrific mouth infections, gut infection, bone pain, no taste and the diarrhoea only went just before I had to go back in and do it again!

You’re not alone at all!

I hated EC but I think it was an absolute walk in the park compared to Docetaxel! Even this cycle without ending up in hospital (yet), it’s horrific. My entire body is screaming in pain and I’ve only slept 3 hours a night for a week. At least with EC, I could take anti-nausea and sleeeeeep.

The not wanting to eat for lack of taste/disgusting taste makes it worse I suspect. There is no joy in life if you can’t taste anything properly. I find my entire life is about drinking enough, cleaning my mouth 4 times a day and forcing some food in me while moisturising the burning skin and nails that is threatening to leave me.

My bloods have clearly shown how much harder Docetaxel is too! It’s a miracle they even came back on the Liver/Bone as anyone would think I had Hep B and lifelong alcohol dependency, it was so bad!

I’ve got one more Docetaxel to go and I’m living for it to be over and move into radiotherapy to be microwaved. Not a sentence I ever expected to think! :joy:

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Interesting you say collarbone…my glands blew up last time and this time around my collarbone, jaw and neck. Insanely so and very painful. What you’ve described, down to the nosebleeds is identical to mine. My last is July 4th so just after you too. I’ve pegged start of August as happy time given that we’ll have had 4 weeks to recover a little. Not even close to fully but we’ll be out of cycles by then. I think I may cry with relief. X

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Yep I totally feel your pain, out of 5 Docetaxel treatments I have ended up back in hospital for 3 of them and have had my dose reduced pretty much everytime. I’m glad like me you’ve only got 1 left to go. Mines on Friday next week and then yep same get to be microwaved but I’m hoping that will be a little easier!!!

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My birthday is on the 9th of Aug and I’m away at the start and end of August in London so my radiotherapy may be delayed until Sept

I had my 5th chemo - but second Doxatexol dose last Thursday. Thankfully this time no hospital stays - I’d 2 last time! But I think I have burnt the tip of my tongue on Tuesday having a cup of tea. It’s still stingy. Anyone know of anything you can put on your tongue. I think I’ll call into the nurses tomorrow to see if they’ve any ideas.

My taste is starting to come back a bit but unfortunately the end of my tongue is sore when I eat or even sometimes speak!

Just one more to go is a great focus as my hands and feet are also both struggling.

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Hi @jools2

For mouth issues during chemo I was prescribed Chlorhexidine mouth wash (Corsodyl), you can but at the chemist/supermarket. It can discolour your teeth but they will improve once you stop using it. I have issues in the past and the dentist recommended Gengigel Gel and it was soothing and help heal the gums. You could also rinse with salt water or salt water and bicarbonate of soda, both more natural solutions for oral health.

A call to your breast care nurse or BCN helpline may offer more ‘clinical’ advice.

Take care :smiling_face_with_three_hearts:

I’m glad to say I officially had my last chemo today…so glad to finish this part of my journey…however taste has already gone and side effects have started! Though this time I know I won’t have to go through this again so it will be worth it!

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