Morning everyone.
I’m interested in the general consensus of people having oral steroids pre and post treatment or just IV during their sessions.
As a newbie I can see there is understandably a variation of treatments tailored to each person, but just wondered what is the most common approach with steroids and how have people’s experience been.
I had my first EC last Thursday with no oral steroids so have slept well but was nauseated Friday to Monday and needed a change in meds. I obviously feel fatigued and had what I describe as a fluey hangover for a couple of days and with mild filgrastim side effects, but now I feel fine.
I presume the side effects are expected to be accumulative so do the oral steroids come in as the treatment is ramped up?!
I will ask of course, but just keen to understand.
Wishing everyone a good day,
Katie
With EC I had IV steroids with treatment and then three days of oral steroids to take at home. With paclitaxel I had IV steroids with treatment only.
I actually hated steroids…we can’t be sure what caused my side effects as there was a lot going on, but I always felt at my worst during the steroid period and it tailed off once they stopped.
I think different trusts have different protocols for steroids; I know it has caused some head scratching in the forum as people’s regimes can be so different!
Hi
I had IV steroids with EC. Then I had 7 days of oral steroids , was not given filgrastim during EC at all. The effects when the 7 days stopped were peculiar, I felt really strange for a couple of days. I did not sleep well at all. When I moved onto docetaxel I had to take 8 tablets the day before chemo, had IV on the day, took another 8 on chemo day and the final 8 on the day after chemo. The main side effect was broken sleep. I also had filgrastim when I had docetaxel. Trusts really do differ in their regimes.
@sharlou@bigpickle
Isn’t it amazing all the different regimes, mind you there are so many variations of cancer treatment and formulas.
Was just expecting the big ‘no sleep’ and I’ve done the opposite, and not much cleaning which is always a bonus!
Hi, The idea of taking steroids is alien to me. I started my chemo in May 2019 . I had 3 EC’s each two weeks apart followed by 12 weeks of Paxitaxel, (although my body only managed 7). Then 15 sessions of radiotheraphy. I did not have any steroid medication. It is strange how the regimes differ. As long as it gets rid of the cancer for all of us then I don’t think it matters. Everyone take care.
Sunshine21.
Hi Sunshine21
Maybe in the last 6 years they found it makes things easier for some people so they just chucked it in there with the rest!
Who knows, maybe your body would have managed the full 12 had you had steroids? So many maybes.
You’re absolutely right as long as treatments are working/helping all of us but perhaps it makes it easier for some along the way…. and I’m all up for that!
Steroids are appparently proven amongst other things, to reduce sickness, nausea and skin inflammation for radio and I just wondered had I had additional oral ones like I have read many people having on the forums, I may have had three or four days of better nutrition and fluids but was continually nauseated instead.
Does anyone feel their steroids were definitely beneficial?
All so new and I’m sure you will remember, anxiety provoking in a world of total unknowns.
I’m all up for a bit of well informed self advocacy and so interested in everyone’s experiences.
Thanks so much for adding your perspective on things, everyone’s experiences are so valid.
I was diagnosed with BC in July 2021. I had IV steroids before and oral steroids for 3 days after each chemo. I am not sure what do you mean by ramping up treatment. The treatment is what it is. I had 4 EC cycles and 12 Paclitaxel cycles. I had accelerated chemo so every week and the steroid was the dreaded dexamethasone. I went a bit dolaly and I absolutely hated them. I couldn’t sleep no matter how early I was taking them and after the 3 days the crash was the worst. I was so emotional and crying all the time. That was total opposite of what I was before taking steroids. Honestly, I never cried not even when I got my diagnosis not ever…but the steroids were absolutely awful and no matter how much I begged my oncologist and my chemo nurses not to have them it didn’t work. For 16 long weeks I was going through hell and my oncologist didn’t even reduce the dose. From what I’ve gathered (maybe wrong) is the way they dampened your immune system so that your body doesn’t react to the chemo in a crazy way as it’s poison and very toxic of course…
Though, saying this, I was one of the lucky ones not to have that many bad side effects of the chemo so maybe the steroids helped in that way.
Not sure if that helps with answering your question about oral steroids but I don’t think we have much choice but some people are tolerating them better… …so fingers crossed you are one of those…
What an absolute nightmare for you, so sorry you had to go through that and that you felt there was no negotiation despite you been so miserable. What a distressing time for you……as if it’s not bad enough!
My reference re ramping up treatment was misworded on my part, apologies, I meant the accumulation of treatment taking its toll as time goes on, when the chemo is having its positive and of course negative impact each time. I just wondered if extra ‘help’ is then required in order for your system to cope as treatment progresses.
I do tend to be an over thinker but I’m also someone who also likes to know the ins and outs.
I think @sharlou is right, this will be a continued head scratcher around the forum and it’s of course not black and white as we are all unique!
Many thanks for your input and best wishes to you in the future.
Good to hear @Lizaki.
Reassuring and let’s hope it made a difference had you not had it!
A bit of feedback and maybe tweaking my dose will perhaps help my nausea next time
Ive had my last EC yesterday after 4 cycles. I wasnt ever given any oral steroids to take at home just the IV (i think) and oral anti sickness and filgrastim injections for 5 days 3 days after treatment.
Had to change anti sickness tabs 3 times as nothing was helping with the nausea.
