Hello everyone! I hope everyone had a nice holiday. I have a question about steroids. I recently had whole brain radiation for a bunch of tiny Mets . Before this I was on Trodelvy. My biggest side effect forever has been nausea. Many of the meds for nausea don’t work for me. The only thing I haven’t tried are steroids. Im nervous about the side effects. This is totally dumb but I am afraid my face will swell and I will get a rash. Vain I know. I have dealt with losing my hair well but this seems like a lot. Anyway I would love to hear people’s experiences with steroids. When you take them, how it makes you feel, , how do you take it, did your face blow up, all that fun stuff. Thanks for reading this long post!!! 🙂 Carla
Who uses steroids?: Hello everyone... - SHARE Metastatic ...
Who uses steroids?
I'm just taking a little right now so I only have effects one day a cycle.
I will be brutally honest with you though about my sister's experience, after brain mets, with steroids. Also I think the key to living through it is continually reminding yourself (and your loved ones) that you are not crazy - its the steroids.
OK first - crazy hunger - she ate all the time - in the middle of the night I could hear her scrounging for food. She gained a ton of weight and it was much harder to help her. Especially because her brain mets made her a fall risk and it was very difficult to get her up if she fell.
Second - she was crabby and angry and argumentative. YIKES! Actual conversation on the way to her infusion "I hate your car" "its the only car I have" "I'm going to have someone else bring me next week I hate you"....aww memories.
Those were the biggies - I begged her Doc - now my doc - to reduce the dose but he said it was for brain swelling. My sister had a very aggressive form of BC - inflammatory and she had two treatments for brain mets - radiation and cyber knife. I know everyone's experience is different and I don't want to scare you.
So I'm on a tiny dose and I have a terrible temper (most days anyway too) and red cheeks for a week. I don't have too much of the hunger thing but I am manic and ocd one day a week. I have tried every way I can to argue against using steroids and I have searched the internet for alternatives but I guess it's like antibiotics in that regard as there are no other options.
Perhaps someone will have something lighter to share. Peace Allison
Ok so I know none of this is funny and the struggle is super real, but some of your answer made me giggle. I am not on steroids and I already told my husband I hate his car!!!! My doc said that I could start small if I wanted to try it. So you take one dose and have repprocussions ( sorry I’m a bad speller) for a week? Thank you for responding!!
Carla
No its for sure funny..I've said some really surprising and mean things to my hubby even on my small dose.
Now get ready to giggle:
Once when I was trying to get her into my car..I had to use my shoulder to lift her behind in the car and then she slid off the seat onto the floor (because the caregiver used the bed sore cream everywhere but on her behind snort now thats funny) . I decided she'd be fine for the short drive and no one would know so I left her there because I couldn't get her up. When we arrived at the destination it was crowded and everyone saw me get her out off the floor of my car.
I am a horrible person 
You can’t make this stuff up! The good news is that you got your sister where she needed to be. 🙂
Hi Ticket 123 & Iwasborntodothis, Your posts are very funny! You both had me laughing and brought a big smile to my face ☺️😄
I take a small amount of steroids, forget the exact dosage, at each infusion due to a previous allergic reaction. The chemo did cause a rash on my face, arms and chest, that was treated with Clindamycin and another cream (sorry I forget the name). It was a classic chemo rash which was part of the allergic reaction. However because of the steroids, my face cheeks flush and turn red, the first few days after an infusion. My NP says the steroids cause the cheek flushing. Everyone tells me my cheeks are so rosy and I look great. 🥺 Once the steroids were added to infusion premeds, I no longer get the rash on my face, arms or chest. There has been no weight gain, no fat face, no additional hunger, only rosy cheeks from the steroids.
The Nurse Practioner said maybe we could take you off the steroids now. I told her NO WAY. She burst out laughing, she said it is because of how much energy I have after taking them. This is true, she is right. Plus I don't want to risk another allergic reaction.
Praying the whole brain radiation will be very successful.
hi Ticket!
I had to take steroids to clear up lung inflammation that I got from Ibrance. I started with 60 Mg and steadily decreased the amount. (I don’t know if this is a big dose or not) I didn’t get any symptoms except for being a little flushed in the morning. I hope it works for you!
Best,
Helen
Hi. Carla.
Like you I was nauseous after treatment. Traditional meds did not help. I did a little research and found that Steroids really help with nausea. I had some 2mg in the house and started myself on them. they worked like a charm No side effects because it was such a low dose I now take them for 3 days after chemo and I’m fine I hope this helps
Lori
so you take your 2 mg for the 3 days and then stop? No tapering off? Thanks for your help. Hope I’m not bugging you.
Carla
Carla
You are never bugging me. Yes, I take 2mg for 3 days. I didn’t need to taper because of the low dose, but you may want to taper to 1mg. Everyone is different. You might even have to stay on them longer. Talk to your oncologist. We have to advocate for ourselves sometimes.
Good luck
Lori
Thank you!! It would be great if it worked for the nausea. 🙂
That is a really high dose, the max for taking at home (as opposed to infusion in the hospital).
Hi Tammy,
I just searched and it appears to be the standard dosage for pneumonitis. We decreased it by 20mg every two days. I imagine the dose would be smaller for nausea.
-Helen
Absolutely. I was on 60 mg for an auto-immune disease. I had to be eased off, but every time I got to 30 mg, I would have an inflammation spike and go back up. I was on it for a year and a half, then moved to NYC and the rheumatologist at Columbia said they were killing me with that high dose (turned out the last spike and increase to 60 mg was due to an unrelated infection) and switched me to methotrexate, gradually. After 2 years, the auto-immune disease was gone, and I got mbc instead (perhaps due to total suppression of my immune response).
I did eventually, after many months at 40-60 mg, get the "steroid moon face," my hair was brittle and broke off but did not thin, and I was kind of manic (that part was fun, I loved even the relatives I don't like, but my sleep was crazy). I got cataracts that they monitored every three weeks initially and I needed stronger and stronger glasses, but when I went off it, I didn't need glasses at all. Usually people are on a much lower dose for a much shorter time. What I had was the extreme.
Go for it, enjoy the ride. You will not have those extreme responses with a lower dose for less time.
Hi
I've had steroids after brain radiotherapy.
They're used in that situation to minimise any inflammation to the brain whilst it recovers.
I've also had steroids alongside Enhertu to minimise nausea and vomiting
I've not.lost hair from steroids nor have I had the moon face it can sometimes cause if taken at high doses/long periods of time.
Ii have had whole weekends of spring cleaning whilst munching on anything I can get my hands on! And consequently I have put on a few pounds
Ii hope that helps
I’m still recovering from the brain radiation and re start trodelvy on Friday. I’m afraid the side effects from the 2 together are going to be rough. Thanks for your info!
While I receive a small amount of steroids at infusion now, initially I had to do a lengthy steroid taper as a result of the allergic reaction. Trodelvy was restarted while I was on the steroid taper. There were no added side effects from the steroids. None and it was an heavy duty lengthy taper. All went very well and fingers crossed it will for you. The only effect was lots of energy at the time.
Forgot to say my oncologist approved
because the cancer is at inflammation stage for the medical artical i was reading little steroid help move cancer out nut large dose move cacer into the cell about 2021 April i had unknown weight loss fatigue and night sweat high heart rate andstiffness leg arm feet joint stiffness because 2016 March i had stage 3 lobular so they did pet scan found body surronding hailr under arm surrounding liver lympha node all light up they did biopsy found auto immue sarcoid like inflammation disease not cancer put on 10mg predinesone for 2 months then PET scan again all lympha node disappear only hailar and pelve a little less than 5mm now stable for 3 years reading is sarcoid like not caner i been put on 5mg predinson since OCT 2021 for maintence. back from OCT 2021 PET scan they did found one spot 1.5cm onsacrum concerned then they did biopsy are met from lobular so they gave me verzenio and falsodex injextion ni been taking with 5 mg steroid daily my saceum spot disappears next scan and always clear since then though,sorry for poor english writing whichmy second language.
From my experience take 10mg above will effect if less then 7 mg daily will not effect your vody and treatment but will help inflammation caused by ie verzenio .....i been on 5mdaily for 3 years no problems , my autoimmue disease getting better i try to break 5mg to 3mdaily now
I get "pre-treatment" of cortisone and benedryl before Taxol infusions, second treatment yesterday. I've not noticed any side effects.
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