Great news @heya_25 delays are so annoying but great that you’re getting back on track!
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Wanted to share a smal victory from this week…MRI on Monday showed that my grade 3 multifocal DCIS is now grade 1, so I got my 4th EC yesterday. Start Docetaxil in 2 weeks, 4 in total every 3 weeks along side Phesgo injections. Lovely to know it is doing its job and the sickness, tiredness and all the other random side effects have been worth it. Now to see what Docetaxil and Phesgo bring to the chemo cocktail party.
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Big hugs Jrna!
Well, I’ve had a reaction to the Pax and woke up at 1 o’clock with a burning red moon face and spots. They opted not to give me any more steroids to take home, big mistake so I’ve just phoned the chemo line and been given some, what a surprise. I’m now taking Piriton so it will be a balance of being as high as a kite on Amazon and snoozing like a baby!
I haven’t done cold capping but I can imagine it is hard going because I wore my frozen boots and mitts and that was chilly enough.
Hope you have a chilled weekend. Will be thinking about you, chin up. 
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Oh no @indigo2 are you okay now? I feel super weird from the steroids today. I woke up at 3.30am and haven’t really slept since. It’s like a zoned out, depressed anxious feeling. I’m thinking not to take the last lot tmw. Other than that feel okay, bit of a weird taste in my mouth…
Have you got any other symptoms? Why didn’t they give you steroids, I thought it was a given…
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I have other health stuff going on, but long term so shouldn’t make much difference. I think sometimes if people don’t have full knowledge of things it’s natural to be extra cautious. I know my condition and have general medical knowledge so it can be to my detriment and annoying sometimes but I’m certainly no expert in cancer care or chemo though.
Steroids support your system to cope with chemo and prevent reactions so I would seek medical advice if you’re thinking of stopping them. Look at me, I’m feeling worse without them!
Have a smooth weekend!
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Hey ladies, Im interested in anyone that’s had/having Paclitaxel, what oral steroids dose you are on and for how long after your cycle? My itchy face is driving me insane and the dose I’m being given clearly isn’t working.
TIA
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I had Paclitaxel towards the end of 2023, for the first 3 weeks I wasn’t given any steroids even though I am very allergic and had a reduced dose from the start. I had an allergic reaction week 3 and the following week was given Dexamethasone to take the day before, the day of and the day after chemo. It was 2mg take 4 tablets at each dose. I was then given a blue steroid card I had to carry for a year. ( that’s where I have found the information).
This was from Velindre in Cardiff, other units or doctors may prescribe different doses. Please check with your team if you have an query.
I hope this helps.
That’s really helpful thank you. I was given 20mg oral dexamethasone the night before my first paclitaxel and then I had to take 20mg the morning before on the day (Friday). It seems this is common practice. I was told I would have two days after to prevent allergic reaction and to help with joint pain it can cause, again common practice apparently. They opted not to give me the steroids due to another health issue which it’s not actually affecting. Called the helpline yesterday and they gave a me a small dose of Dexamethasone to take with regular Piriton but it hasn’t worked at all and the symptoms are driving me crazy! 
I’ve just called them again and I’m waiting for a call back. Might open it up to the general forum to perhaps see if it’s common to receive more. We’re all individuals of course and there are so many different approaches but it seems post steroid dosing is common and I’m just wondering if there’s more scope to help my symptoms.
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Do they also give you Dexamethasone via the drip as a premed on the day of your Paclitaxel? I had it but didn’t pay attention to the dose. It was given with Piriton and an antacid. Mine were tablets was your 20mg liquid?
I also took ranitidine (antacid) and ceterizine (antihistamine)the day before, the day of and the day after at home.
I hope you hear soon. maybe you could ring the BCN nurses after 9 am tomorrow on 0808 800 6000 if you don’t hear back.
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Just Piriton IV. Kinda think I need more steroids but don’t really want them if you get what I mean! I’m already on Loratidine (Claritin) as advised for the lovely filgrastim jabs which start tonight to add to the party!
Thinking of everyone this weekend going through your own little battles.
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Hi, ive just had my 2nd Paclitaxel of 4 and both times ive had a reaction. Neither time have i been given steroids the day before, only on the day of along with the piriton. None in my goodie bag of drugs either for the following days.
I had my treatment in the afternoon on the tuesday, by time i got home i went straight to sleep and when i woke up my whole face was red and swollen round my eyes, with a rash across my neck/chest. I phoned the 24hr helpline and was advised to take antihistamines immediately and to go back to the hospital for them to check me over. As the swelling started to go down whilst at the hospital they weren’t concerned and i was given hydrocortisone cream for face and told to continue with antihistamines for 7 days and allowed home. I literally smothered my face in the cream and luckily it worked quickly. Things seemed to get better until my filgrastrim injections and omg ive never been in as much pain as i was for the first 3 days of them, even when i had them during EC treatment it was no where near as bad. To the point i was in tears and refusing any more treatment.
When i spoke to consultant he said the rash was a side effect of the drugs not a reaction, although i disagreed with this, and the bone pain was expected but he did give me pain killers to take as paracetamol/ ibuprofen/antihistimines weren’t touching the sides. He did however agree to lower my dosage for 2nd treatment but had the same reaction again. Ended up back at hospital again although i caught it quicker this time. The bone pain this time isnt as bad as the first time as i only had 80% of the drug but it still hurts today and i took the extra pain killers. I have a phone call with consultant again tomorrow to discuss the 2nd treatment and make plans for the 3rd.
Fingers crossed you get some answers and your injections aren’t too bad.
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Thanks so much for taking the time to write about your experience.
They have told me to take different antihistamines on top, which fortunately I had for hay fever. I’ve done this two hours ago with no difference.
I have joint and leg pain already before taking the filigrastim! (I’ve literally just injected it just now 
)
I’m off to put hydrocortisone cream on my face before I go mad, thank you!
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Hey @indigo2. I’ve had Filgrstrim for 7 days after each of my 4 EC and virtually no discomfort apart from between my shoulder blades a bit achy. You might get lucky. Was speaking to hubby about it on way to work and I wondered if the high dose of calcium I’ve been taking since diagnosis might be why or if it is just that it’s the one side effect I don’t have….yet!
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@kls81 thank you. That was helpful to read. I had Docetaxel for the first time on Thursday, after 3 cycles of EC. The pains in my hips started on Saturday and is now in my leg joints, muscles and up my back. Absolute agony. I’ve been advised to alternate paracetamol and ibuprofen, but the oncology nurse said that I could use my left over co-codamol too. I’m really hoping that I had the full dose this time, so they have options to reduce my last two.
I was lucky not to have allergic reactions but like others, I started oral steroids before treatment. Sorry to hear that you ended up in hospital again. I hope the extra pain killers do their job.
PS. I know I have to keep track of my temperature occasionally when the tablets have worn off - thanks to all the lovely people that have posted info so far.
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Hey all, just checking in with my experiences…. I never thought I’d say it, but bring back EC! 
had my first Pax on Friday (with 20mg of steroids immediately before, none to take home). Had chest pains yesterday so got told ‘straight to A&E’ to leave there almost 13 hours later at 1am with no answers for what’s causing them and, by then, also in agony with my back and legs. The back and leg pain has worsened further overnight and I’m waiting on a callback from my team. Chest pain also still ongoing but all potential heart / clot issues ruled out by hospital last night so I wonder if it’s also related to the Pax. Waiting to discuss with my team but it makes sense to my (non-medical) mind that if it’s attacking my muscles, joints, etc elsewhere that the recently damaged surgery nerves, etc in my chest would also join the party! I’d had very limited aching with the pegfilgrastim injection so the legs and back are definitely a Pax reaction! Anyone else having any sharp pains around surgery sites - they’re like intermittent, sharp stabby pains is my best description!
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Hi @daxiedragon9 it may sound silly, but have you tried mint for the chest pains? I know that trapped wind can be reallllly painful, so just a thought.
Have you heard from your team yet, as when I had a reaction I got pain in lower back and top of (back of) thighs?? I hope you’ve spoken to them by now, and all the pains soon wear off 
@indigo2 how are you doing today? Has that itching eased off at all?
@heya_25 I bet you were so glad to be discharged! Is it your first pac on Wednesday?
@dragonfly2 how is the leg? I hope they’ve managed to get your next treatment booked, you feel lost when you’re just waiting don’t you!
Hope everybody else is doing ok. I have my first paclitaxel on Wednesday and I have to say I’m getting a bit nervous. I originally started chemo back in December but they stopped it pretty quick as I had an allergic reaction to it, so then didn’t have any more that time. I’m nervous I’m going to react to the pac, although the common sense side of my brain knows that the nurses will be there watching.
I also can’t make my mind up whether to carry on cold capping! Think I’ll end up deciding on the day!
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The unpredictable nature of new chemo is so scary. I’ve been out of the game taking morphine via GP for hip and lower limb pain after the pax, it’s horrendous. Called the helpline yesterday and I refused to take my filgrastim injection on top. Terrified it would make it worse. Unfortunately my neutrophils are borderline so I actually really need it. Waiting for a call back from the team.
Face still itchy so on two types of antihistamines.
Not sure what the answer is but it’s not much fun 
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@indigo2 I have no words of help, just sending hugs that you get on top of it soon.
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Oh no, seems like some of you are having a nightmare I had pac on Thursday. Been tired and had joint and muscle pain and stomach cramps. Would take it any day over EC. I had to stop my steroids as I was totally zoned out!!!
Hold on in there ladies, we’re nearly there 
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